My Banded Baby

Welcome To My Banded Baby!

Hello, and welcome to our webpage. This is the story of Dominick,. the youngest of my four children, diagnosed at four months with severe left sided positional plagiocephaly. We are sharing our story in hopes of helping other parents of banded babies, and those seeking treatment options for plagiocephaly. Our story documents our research, diagnosis, and treatment with the Doc Band for his plagiocephaly. Dominick suffered from among other issues a muscle imbalance caused by his plagiocephaly, similar to torticollis babies. We will share with you our long days of therapy and the sacrafices the whole family made to be sure that Dominick got all of the neccessary treatment . Dominick graduated from his Doc band in Setember 2004 with awesome results, he still struggles with other issues, but is on his way. Please feel free to email us with any questions, gattva@aol.com.

In The Beginning

Dominick was welcomed into the world at 12:50pm on September 10, 2004, by me(Carol), Daddy(Scott), and his two brothers and sister, Anthony, Frankie, and Carly.  The pregnancy was a long one and one filled with ups and downs. Dominick is my fourth baby and my sixth pregnancy, so I had some muscle weakness and had to wear a maternity belt to help support my uterus.  I felt like he was sitting down low right from the start. At about 26 weeks when I woke up on the morning of my 40th birthday in tremendous pain. I went to the hospital thinking the worst, only to find out he was fine, but I had a gallstone lodged in my bile duct. Like turning 40 wasn't bad enough! They hospitalized me and gave me pain meds until I was lucky enough to have the stone move back off the duct. Because I was past the safe time period for sugery I had to wait until after delivery to have the gallbladder removed. This meant a strict no fat diet, and many days spent sick and in pain. I lost wieght every week I went to my OB, it would kill me to get on the scale. I was so afraid for Dominick. I ended up wieghing 3 lbs less at delivery then when I found out I was pregnant. The day finally came when they could safely induce labor. I went in at 7:30am and they started my pitocin at 8:00am, Dominick came into the world at 12:50pm after a normal labor and delivery. There he was our little boy! He was perfect, but very small and skinny for what I was used to, he weighed 6lbs 6oz and was only 18 1/2 inches long. I guess my weightloss did affect him. We noticed his headshape at birth, but no one seemed concerned including my husband and I. Babies heads usually round out after a week or so.

Although tiny Dominick was a strong baby, he would raise his head off my shoulder to see and when I sat him on my lap to burp him he would try to hold his head up. This didn't surprise me because my other three kids all had excellent head control early on. Dominick was so small, he only took an ounce of formula at each feeding and that would take almost an hour to get down him. He leaked formula everywhere out the sides of his mouth, and would cry and scream during feedings. The hospital let us go home on day two(Saturday) with the understanding that I would bring him back if there was a problem and I brought him to the pediatrician on Monday. I figured he was little and some babies take a while to get good at eating. We went to the pediatrician on Monday and he had lost 6 ozs, I was upset, but not too worried, all babies lose a little at the start. We decided to check him again Wednesday and if he lost more wieght he would have to go back to the hospital . I worked on him eating the next few days and he was starting to take about 2 ozs by Wednesday morning so I was hopeful. At the doctors he had not lost any wieght, but had not gained any either, so we would go back Friday. By then I had him eating 2 1/2 ozs and he had gained about 4 ozs back so I was happy and confident that I could keep up with this, even if it killed me. Dominick was happy and healthy other than the eating problems, so I wasn't worried. He would want to eat almost constantly, but by the end of the first month he was taking 3 ozs and gaining wieght. He still cried and fussed at every feeding and leaked formula out of the corners of his mouth, but at least he was eating. I had never had a baby that would get so upset during feedings. He would cry because he was hungry, but cry when the bottle was in his mouth and do anything to push it back out. It felt like all I did was feed this poor baby. It would take so long to get the bottle down and I'd put him for a nap and he'd be up in an hour and half to eat again. The type of formula didn't seem to matter, the only thing we found was that he couldn't handle the amount of iron in the regular formula, so we switched to low iron. This went on for the next two months.  He was a good natured baby and slept well when he wasn't hungry,lol. He was my first to ever sleep on his back and the first to never move from his sleeping position. I just thought he was a very sound sleeper. At this point I had not paid much attention to his head shape, but I was noticing his neck seemed to be a little more floppy.

      

The Diagnosis

By the end of month two we were starting to get worried about his head shape. I began trying to keep him off his flat spot when sleeping. We bought every kind of wedge and pillow made, but short of putting cinder blocks in his crib, nothing kept Dominick from his favorite position, flat on his back on the flat spot. It seemed like he was getting worse every week. At three months I began to notice the head control we were so amazed with early on was disappearing. He was barely able to turn his head to the right and preferred to keep it turned to the left over his shoulder. It was just the same way he slept every night. It was becoming a rare occasion if we found something interesting enough to make him look forward.. I remember looking at the Christmas picture and thinking ,"what a cute pose with his head tilted" only to find out that was how his head sat because he just couldn't hold it any other way looking forward. By the time he was approaching four months I was beside myself with worry. He had started to roll over and that had stopped, he seemed so weak on the left side of his body and his head was getting so bad. We kept saying to each other that something was off about his face, and his forehead looked as if it was pushing out on the left side. At first I kept saying that we had all his well checks, surely if there was something wrong it would have been picked up by now, but then my "Mommy Instinct" kicked in strong.

I began my search for answers on the internet. I went to the American Academy of Pediatrics (AAP) website and typed in,"Why is my baby's head flat?". There it was; PLAGIOCEPHALY. An abnormal head shape caused by inutero constraint, back sleeping, too much time in a carseat, or bouncy seat. BACK SLEEPING, wait a minute aren't these the same people who told me to sleep him on his back? OK, Now I'm mad!! How come no one told me this was a risk ?  I left that hospital with bookmarks, stickers and a stack of papers all saying "Back To Sleep" on them, but nothing that said plagiocephaly was a risk. I brought up the pictures they had and started to cry. Why hadn't anyone told me?  I began reading what little info. was available on the AAP site, and they spoke of banding treatment. Then it hit me, my sister in law's little boy wore a band for about 4 months to correct the shape of his head. I grabbed the phone  and that is how I came to find Cranial Technologies.

                                   The Cranial Technologies website was a wealth of information. I absorbed everything. I used the assessment charts to check his severity, he came up severe, I kind of knew that. His head by this time looked like someone had put a bicycle helmet on him sideways. I read about the Doc Band treatment and thought it was worth looking into, but me being the ever skeptical person I am, decided I was going to research all my options. I found out there were bands called Star Bands, Hanger Bands, and a few made by doctors themselves. I researched most of the other providers and found just basic information, mostly repeating what the AAP site had said. I decided to go more in depth and  I looked up all the research studies I could find on the subject. It seemed that nearly every study on the diagnosis and treatment of plagiocephaly came back to the team from Cranial Technologies. I read that the Doc Band was the first to gain FDA approval and because of that, they had to be able to provide the studies that backed up everything they said thier treatment could provide. I wanted a provider that would continue the studies, because I feared what this would do to him down the road. Well my choice was made, the only one who fit my criteria to treat my baby was Cranial Technologies. I called  to see what I needed to do to set up his evaluation and found out I needed a prescription if he was to get treatment. I gave them all the insurance information ahead of time and we set a date. I called my pediatrician's office the next day for an appointment to get the prescription.

While I waited for the big day to come when I would finally have some answers I went to my pediatrician. Learning from the parent board on the CT website that doctors can sometimes be uneducated or against banding I went to her office prepared to fight. I copied everything from the CT website including the assessment charts, I had copies of studies and anything I thought might help me explain or demand treatment and a prescription. It was my pleasant suprise that when I walked in and showed my ped. everything I had and did the assessment charts with her, she was very much convinced he would benefit from treatment. She wrote me a prescription for treatment and did an extra check of his head to be satisfied he had no outward signs of craniosynostosis and most importantly to me gave me her full support. I thank you Dr. King.

On January 10th,2005 we went to Cranial Technologies in Annandale,Virginia for Dominick's evaluation. The first thing I noticed was that the office was very inviting and clean. This is important to me.  My husband and I met with Leslie who was very comforting and helpful. First she explained what plagiocephaly was and the possible risks that come with untreated plagio. Then we had pictures taken of Dominick's head and face from every angle by Tracy. They were great at doing things quickly so Dominick didn't get too fussy. Tracy took measurements for our insurance company and then Leslie came back in to discuss his case.We were told that Dominick had a pretty severe case of leftsided plagiocephaly.  In addition to his flatness he had facial asymmetry and ear asymmetry  both of which were pretty signifigant.  The good news was that he was a candidate for the band treatment and because of his age we should see pretty good correction. The casting and treatment processes were explained again and we were told we could go home and discuss it and then get back to them with our answer of go ahead or not. We didn't need any time to decide, we asked them to go ahead and start things moving. Cranial Tech. submitted our insurance claim and we now began the wait for insurance to grant precertification. While we had to stay on top of things, making phone calls to insurance and back to CT and then the peds office to keep things moving, we started things going to work on the muscle problems.

Learning First Hand About The Associated Risks

While we waited for an answer from insurance, I started to look for help with Dominick's other problems. Knowing that there were associated risks with plagio from reading the research articles I started to look for who I needed to contact and how I could make him better. It was an awful time, his muscles seemed to be getting weaker all the time, he was diagnosed with an umbilical hernia being made worse by the on and off constipation and I was afraid to lay him down or sit him in a bouncy seat for fear that it would make his plagio worse. He could not stay in a seated position even with pillows propping him up; he would slide away. I posted on the CT parents discussion board for help and got a response very quickly from a mom named Sarah. Sarah was a lifesaver and told me about the Bumbo seat, a seat designed to allow even very young babies to sit up with no pressure on their heads. We talked a bit and she told me about the Yahoo Plagio Support Group.

It was so nice to know I was not alone. I posted my story on the support board and received so many welcomes and replies. It was there I learned about Early Intervention, a state run program for at risk children birth to age three. My states program is The Infant And Toddler Connection Of Virginia, providing free or low cost services for children with physical and/or mental disabilities. I contacted them and got things started. We had two evaluations at the end of January to see if he would qualify. Dominick was found to have a two month delay in gross motor skills (he could not roll over either direction) along with muscle weakness and stiffness in his neck (side and front muscles, causing a backwards and up tilt), his legs, hips, arms, and back (especially in the trapezius muscles). Along with these muscle issues he had persistent feeding problems. He still leaked formula from the sides of his mouth and we were unable to start cereal because he would just scream as if we were trying to feed him glass or something. He hated baths and would cling to my arm like he was going to die no matter what we tried. We learned that these were sensory issues and he had few more. He would cover his face with a blanket or stuffed animal in order to go to sleep or when he was over stimulated. I think we spent the better part of 3 months trying to keep him from suffocating. He would not touch any toys other than stuffed animals, and had many other textures issues. I was so upset, how could he ever get past all this and go on to be as normal as possible. Early Intervention decided he would receive physical therapy and they would have him evaluated by an occupational therapist for the feeding issues. By the time they left I was feeling very sorry for myself and wondering how I was going to do all this with three other kids to take care of. I moped around about a day but then decided that if he was going to have a chance at living a normal life it was up to me.

Our physical therapist was Molly and Dominick just loved her. She was amazing and taught me so much in just one session. She would actually get on the floor and put herself in his position to help explain things to me and to find the best possible exercises to help him, you couldn't ask for more effort. She would come every two weeks and it was up to me to do his daily therapy. She explained that if he was going to get better it was going to take a huge commitment from me. I absorbed everything I could from her and got to work. I stretched Dominick at every diaper change, tummy time was a must after every nap, and we did a full therapy session everyday. It was hard and I had to constantly tell the other kids they had to wait or not right now. They understood most times, but it was hard on my then four year old. I thought of ways for her to help with his therapy and taught my older ones how to hold him to get a stretch and what games to play to keep him active. They were a huge help and really very good. All normal life changed and it became a universe centered around helping Dominick succeed. Now we just had to get him his Doc Band, it seemed like forever for insurance to give the precertification.

Doc Band Number One

Insurance finally gave the precertification for treatment and we set up a casting appointment. On February 2, 2005 Dominick was casted for his first Doc Band. I went in prepared thanks to the Yahoo Support Group, with a bottle, pacifier, washable toys and his favorite bath towel. I really thought this would be a non-stop screaming fit, but boy was I wrong. The process started with a stockingette covering his head and face. They cut holes for nose and mouth and marked out his eyes and ears. We had a bottle ready for him to drink when hey started the plaster on the front. He laid there drinking his bottle happily while they put the gooey plaster strips on his head. Now it was time for the back and that meant no bottle and sitting up, so we changed to his pacifier. Daddy held hid arms and shoulders down out of the way and I helped support his head from time to time, leaving me a chance now and then to snap a picture of our little statue. After it dried just a few minutes it was slowly lifted off and the final touches put on. The whole process took about 15 minutes. After the casting we gave him a bath, we actually dreaded this more than the casting because of his issue with the water. They had a seat that rotated and keep him feeling very secure, we had our first bath without a huge fuss, Hooray. We of course ran right out and bought the closest thing we could find to the seat they had. He has enjoyed his bath a little more each time and now loves them. The cast was shipped to Arizona to be made into a head mold and his band made to fit that. It takes about ten days to two weeks usually. We were lucky. Ct called and said his band was in early and we could come get it fitted.

On February 10th, 2005 Dominick went to be fitted for his Doc Band. Dominick also turned 5 months old that day. We drove the two hours to get to the clinic getting more nervous all the way. We were prepared for him to throw a big fit about having this thing put on his head. When they brought his band in a feeling of sadness came over me, he seemed so little to have to be put through all this. My eyes filled with tears as they placed it on his head. Once they had it on and let go of his head, to my surprise he didn't even care about it being on. He looked at me and I could do nothing but smile, he looked so cute in it. We stayed around for a while to be sure the fit was perfect, a couple of adjustments and it was. We were given our wear and care instructions and off we went. Our first afternoon with the band as spent doing three hour skin checks to make sure they were no problems. He never minded the band at all and only gave me fits when I was being clumsy about taking it off or putting it on. Because the afternoon went so well he was allowed to sleep in it that night. We thought this would be the real test, how will he ever sleep with this thing on his head. Again I was wrong; he went right out and for the first time in a long time actually looked comfortable laying there in his crib. Aside from one red mark from me tightening the strap (a big no no) he had no problems and we were in the band 23 hours a day. It did take some getting used to, it was hard to snuggle his little head and I gave myself a few fat lips, but all in all the routine was very easy. We had our first appointment one week after fitting I couldn't believe it, progress already. He had to have adjustments and we set up for the following week. Week two and again more progress. Dominick consistently filled in the growth area he was given every week and the correction was so amazing. This went on for 5 weeks and then the band was beginning to get thin from adjustments. We got things started for a second band.

Most babies need only one band, but because Dominick was a severe inutero case and young we had already known he would take more than one. At 7 1/2 weeks into treatment Dominick outgrew his first Doc Band, but the correction he received was absolutely amazing. He still had more rounding needed and his ears didn't move yet, but his face was so much better and his head was amazing. Insurance was so slow to respond that he ended up being out of a band for two weeks.

Physical Therapy And How The Band Made A Difference

We continued to do his pt on a daily basis and were seeing changes in his neck range of motion already. We scheduled a check up with a pediatric ophthalmologist to be sure the funny tilt was not being caused by a vision problem such as ptsosis (droopy eyelids) or something. He was checked for all problems and the only thing found was that he was farsighted. We were told that he might grow out of it by a year and to follow up then unless we see any other problems. When he got his band and had worn it about three days he started to rock his head back and forth. He did this on and off throughout one whole day, I was beginning to get really nervous. A million things went through my mind,” What is wrong? Is it squeezing his head?; I finally figured out that he had just discovered he had roundness on the band that allowed him to get off his flat spot. I just cried like a baby, it was so good to see him lying there with a silly smile on rolling his head back and forth. The next day was spent trying to get the rest of the body to follow and within two weeks of having his Doc Band, Dominick was rolling over in both directions. His PT was so impressed with him and the extra benefit that the band provided. Dominick was her first banded baby.

Our therapy sessions were beginning to pay off. We were seeing him moving more and finally doing the commando belly crawl. Oh no, he's on the move. He would go everywhere he could on his belly, but it was just a relief to see him do it. I still had some concerns about his legs, and back, but boy was he doing great. His June goal of being able to sit up assisted was replaced by sitting up on his own in April. He was now getting up on all fours and rocking, so we thought crawling was just around the corner. We began adding in different strengthening exercises and ones to promote his reaching and grabbing abilities. We used the big exercise ball everyday, this was his favorite. We thought up ways to make his exercises like play and ways to involve everybody. I bought a play corral so he would have more room to keep moving, and I could have a safe place for him to be. We continued this routine, me doing the daily therapy and Molly coming every two weeks to do deep tissue massage (a must for his back muscles) and check his progress. She would show me new exercise each time and we would incorporate them into our routine.

While this was going on we had our visit from the occupational therapist, Elizabeth. Elizabeth was so sweet and had an immediate rapport with Dominick. She sat and listened to me complain about not being able to get him to take any solid foods, despite the fact that I had been doing desensitizing therapy I learned online. Desensitizing therapy is a way to get the baby's mouth ready to work correctly to move from the front of their mouth to the back and also accept new textures. It is done with finger toothbrushes and gum massagers. Of course as it goes with a baby, tell someone that they aren't doing something and they will. Elizabeth sat Dom on her lap and did some desensitizing and playing with a spoon, she then took some fruit on his spoon and he ate it. I was embarrassed but also a little teary to see him eat. She said he was probably just ready by the time she got him and gave me some hints to keep him moving forward. I couldn't wait to show Daddy, well that was a joke. I tried to give him his cereal and he screamed bloody murder. Thinking we were all tired I figured I'd try again at breakfast. Well I tried every kind of cereal, rice, oatmeal, barley and all made him scream. I mixed it to every consistency and still he screamed. I sat down on the kitchen floor and just cried. How was I ever going to get this kid to eat. He was wanting to eat a bottle every hour and a half when going through his growth spurts and I was afraid that as he got bigger he would not be able to maintain weight gain. It took me some time to get over this set back, I felt like such a failure. I finally got smart or maybe just enough sleep one night, but I thought it must be texture. He ate the smooth stage one fruit that day, so I went to the store and bought just about every fruit and vegetable in stage one. I came home and picked the one thing that all my babies before had loved, sweet potatoes. He ate an entire jar and I called everyone in to see. So there we were the whole family sitting around a baby covered in sweet potatoes just marveling at the simple task of eating.

We tried to find ways to help Dominick deal with some of his other sensory issues either by desensitizing him to it or giving him a coping skill. He slowly began to tolerate the touch of different textures. We bought everything we saw that had interesting texture for him to feel and play with, including dog toys. Sounds funny but dog toys, I found usually have great texture variety. Dominick will now accept most new things but only after careful inspection and his trademark scratching. He will take his hand and scratch at what ever it is he is not sure of, so his whole hand doesn't have to come in contact with it. It is really not a big problem except when the new item is a spoonful of food or a person,lol. We hope he will eventually grow out of this, but we cannot take it away or replace it right now.

His pt was coming along and he was just going forward at an incredible speed. Molly came one day and I called to her to hurry, she had to see this. As she came in the front door she was greeted by a standing up Dominick. He had worked all weekend on trying to do it and had only done it twice before. Well he just took off from there. Everyday he was doing something more, he was soon holding on and taking steps. He was like a whole new baby. I continued his therapy and in May he had met or surpassed all of his goals. It was time for him to be released. Molly came and documented his progress and we talked about the maintenance therapy I would need to keep up with until he was walking really well all the time. We would still need the expertise of the occupational therapist so new goals were set for that. We were also questioning weather he was hearing well or not. He didn't seem to respond all the time and was a bit delayed in his speech.

Doc Band Number Two

After waiting out insurance again we finally got casted for band number two.  Dominick had become very comfortable about being at Cranial Tech., so he played and laughed all the while we were getting him ready. He even showed off his new skill of getting on all fours and rocking back and forth. He was a little bigger now, so he put up a bit more fuss, but still nothing terrible. Again it was over quickly and by the time bath was over it was all a memory. This time it took the full two weeks for his band to be ready for fitting.

On April 26th, 2005 Dominick was fitted for Doc Band number two he was 7 1/2 months old. Our appointments would now be every two weeks due to his age. When we went for his first appointment he still had a little room left in some areas but needed an adjustment to go another two weeks. Although he hadn't filled his band for the first time he still had improvement. The growth rate does slow a little bit at this age. He went like this at every visit, never filling the band completely but always a little more progress.  We decorated his second band with a moose and bear theme at first. We always have so much fun decorating. As the weather got a little warmer I decided he needed a more summery theme, so off I went to the craft store for more stickers. I worked hard on making him a really cool beach theme.

As we approached 8 weeks in band #2 and I noticed his band getting thinner I started to think about the possibility of a third band. His head was unbelievable compared to what it looked like at the start, but he still had a bit of flatness in the back and needed more growth on his forehead and his ears were still looking out of alignment. I knew that third bands were extremely rare, but he was a severe inutero case. That meant we were trying to redirect growth in a skull with bone deformation from they way it grew inutero, not treating the more common positional plagio. I had also noticed that as his head shape improved I was beginning to see the actual bone deformation; the bone just above his left ear was pushing outward. I had a consult with our regular OT Angela at his appointment and we decided that in the next couple weeks we needed to make a decision. I made his next appointment for two weeks.

Before the appointment I asked if we could seek the input of the design team knowing that if there was not enough asymmetry left a band could not work properly, but worrying about the deformation that was still present and could possible get worse, they said yes. I know Dominick's case was different from most, but it really impressed me that they cared enough to do all this extra work to help me find the best solution. I really wanted to take every opportunity to get him every bit of correction, and wanted to try and fix the bulging area above the ear, but what if it didn't work or couldn't be done. When all the information was brought together for me, it laid out this way. Because Dominick's was a severe inutero case, we couldn't be sure that he would receive any more correction from a third band, or that his ears would ever look aligned because of the twisting of his skull. They put pictures together for me and showed me where the skull was trying to grow on an angle. This was the reason for the bone pushing outward. This was really disappointing to me at first because I thought that meant there was no chance to get a third band and the final bit of correction. I was thrilled with Dominick's headshape compared to the deformation we started with and had come to terms with the fact that he may never receive full correction, but I wanted to be able to say " I did everything I could". Then Leslie explained, they just wanted me to understand that there is no way to predict weather we'll get any more correction or be able to hold that bone from pushing further out and that his case was a challenge, but one that CT would be willing to take on if I would like to proceed. I was so happy it brought me to tears. I trusted everyone at CT and the knowledge and expertise of Jeanne Pomatto( CEO of CT ) as I have turned my infant son's head shape over to them for the better part of his first year of life and had seen the miracles they've worked so far. Of course I would proceed. We set up our casting appointment for July 5th.  Now it was time to work on the last of his other issues.

The Ear And Eye Issues

We had noticed that Dominick didn't always respond when we called his name and didn't always react to noise, some days we said he's not hearing and others we would say I don't know he seems fine. We decided to have his hearing tested and setup an appointment with a pediatric ENT. Dominick had never had an ear infection or anything else that caused us to be too alarmed but other people noticed the inconsistency in his hearing and there is a family history of deafness and hearing trouble. We took him to the doctor on June 1st and they took a medical history and started the ENT check to be sure everything was structurally correct. The left ear was fine and all looked ok, but his right ear was clogged with wax. They had to clean it out before they could see the eardrum. They used a vacuum to be sure they got everything and then found an infection and fluid behind the eardrum. It figures the only infection the kid gets is when he is supposed to have his hearing test, lol. So he was put on antibiotics and drops for his ear for ten days. We rescheduled his test for the 15th of June. He was brought in and checked and the ear was clear so we could go ahead with the testing. The audiologist put us in the soundproof booth and he sat on my lap. They performed different types of tests and he was found to be hearing in the normal range. Then they performed the tympanogram and found that although it could not be seen by the eye, there was a small amount of fluid behind the eardrum still. We left knowing that our little boy could hear us and that he was probably clogged up and that would take care of it. We were told to follow it with our regular pediatrician. On the 4th of July weekend he started screaming again and pulling at his ears, of course it was a holiday so we had to wait till Tuesday. We took him in and his ear was once again full of wax, and because they couldn't see the eardrum clearly they started antibiotics and the drops to help dissolve the wax. We used the drops for the seven days and the antibiotics for nine days and he was still screaming. We had to get him back to the pediatric ENT's office and have it vacuumed out again, but at least there was no infection. We were told his ear canals are very tiny and he may end up having to go in every three months to have them cleaned. Maybe this would explain explained the hearing inconsistencies. When full of wax he hears like he is under water and that could also explain some of his speech delays. If you don't hear it right you don't learn to say it right. Ok so as far as ear problems go this is pretty minor I guess.

Now if you remember Dominick's eyes were checked at 5 months and he was found to be farsighted and unless we saw a problem didn't have to go back until he was a year old. Well we started noticing that his right eye was turning in and over the course of a few weeks it got worse very quickly. We noticed that his left eye was starting to turn and I called and made an appointment to have him checked again early. The doctor checked his vision and found that his farsightedness had gotten much worse over the past 5 months and that his eyes were over compensating when he tried to focus on things that were close and things that were far away, this was causing the turning in. It is called Esotropia Accommodative. The doctor said he was not seeing much of anything very clearly. I felt so bad for him. My poor baby what else could go wrong. He would need to be fitted with glasses and seen again in three months. We took him to the optician and she showed us these little tiny frames made by Fisher Price. They were so cute but so sad at the same time. She tried them on him and he was just the cutest looking thing you ever saw. Once they were on he didn't really bother with them, he did spent quite a bit of time looking in the mirror at himself, lol. We decided on those and the bronze color and ordered a pair for Dominick. Funny thing about these little tiny glasses, they come with a huge price tag. We paid 300.00 dollars for his frames and lenses; I certainly hope insurance covers at least one pair. The optician said that it was not uncommon for their prescription to be changed at the three-month check, but at least we would be able to reuse the frames at that point still. I wonder how fast he will grow out of frames in the next few years? When he goes for his three-month check they will determine if the prescription is providing the right correction to completely take care of the overcompensation, if not we will change it and wait again. If we can find a prescription that completely resolves the problem then we ill be set and probably have some eye therapy later on. If we cannot completely correct the eyesight with glasses he may have to have surgery, but I will exhaust every possibility first. So we are now waiting for Band #3 and a new pair of glasses.

About The Plagio Support Group

While waiting for band #3 and his glasses I thought I would tell you about the Yahoo Plagio Support group. This is a great group of parents all dealing with the ups and downs of plagiocephaly and it's treatment. I joined the group in January 2005 and have since been made a moderator.  This is the place to not feel so alone with this issue. There are almost 5000 members ( of course not all active) to help with your questions, listen to your frustrations, help with insurance, and share your progress stories, no matter what type of treatment you are using or thinking about using. We have parents using all brands of bands/helmets, parents doing repo, and parents of graduates who have been through it all and are now there to give advice and comfort. We have a photo section of our beautiful babies to look at, and lots of research articles and help links. You can make contact with other parents in your area or parents using the same facilities. I don't know what I would have done without the wonderful moderators and the members who so warmly opened thier arms to me when I thought I was just going to fall apart. You will find that through your experience ( however great or little it is so far ) you will be able to help others too. I must say Thank You to everyone who have been by my side through this long journey of ours.

Starting Doc Band # 3 And The Glasses

On July 19, 2005 Dominick was fitted for Doc Band #3. He knew it was different from the minute it was put on his head, he put his hands all over where you could tell the subtle changes were made in his new band. He didn't fuss about it at all, just checked it all over. They trimmed up his forehead so that it would not hang low over his eyes and adjusted around one ear. This visit was slightly shorter than an average fitting, because we knew we would be back during this week to have the adjustments made for his glasses.  Wouldn't you know that the minute I got home from CT there was a message that his glasses were in. I called and set up to make the trip to get his glasses fitted and then back to CT the next day. Dominick sat like an angel for his glasses and they looked so darn cute. We watched as he panned around the room which was now obviously filled with much more than just a binch of blurry things. Satisfied we had the proper fit we headed out to CT. As we walked to the car he was amzed at everything, the cars going by, the grass, the trees, he was truly seeing it all with "new eyes". Off came the glasses when we got in the car, I was afraid that he would get them off while I was driving and that would be the end of them. At CT we put his glasses on before we left the car and it was so funny. He almost fell right out of my arms staring at the plants in the flower beds we had walked by so many times. With glasses in place they marked out for the ear pieces and how high it would need to be taken back above the eyes and then made the adjustments. He looked too cute in his band and glasses. He left them on the whole time we were there and when we left he kept them on in the car, since we all agreed that he should not be able to get them off from under the band. I removed his band at dinner to clean it and his head and put the glasses alone back on while the band dried. I was really excited to see how he did with his little fruit puff snacks he gets while waiting for slow old mommy to get his dinner ready. Up to this point he has not been able to pick up individual puffs, he just scooped at what was on the tray and hoped he ended up with something. Well I poured them out and he reached right out and picked one up and popped it in his mouth...YIPPEE!! He could definitely see better. Now maybe he could stay on track with his fine motor skills. The next day he did ok, but he was getting better at taking them off when his band wasn't on. We watched him for the weekend and then decided that he would need to go back to CT for one more adjustment to his band over the glasses.

Over the weekend he was getting incredibly good at taking his glasses off band or no band. By Sunday I was going a little crazy, but was sure he would do better eventually. Monday morning we went to CT for his adjustment and while in the waiting room and sitting in my lap mind you he got them half off and bent them so badly that the lens popped right out. I was really upset. We got his band adjusted and it would be perfect, now all we needed were glasses that weren't broken,lol. On the way home from CT I called his optician and she said to bring him right in, so off we went again. The optician was able to fix them and readjust everything he bent and then made extra sure to get the most comfortable fit. We put his glasses on and then his band and he looked great. I decided that they would come off for the ride home. He continued to take them off and grab a hold of them whenever I tried to put them on the rest of the afternoon and evening. I was never so glad to see bedtime as that day, LOL.

Well today I got up renewed to start the battle over again, still telling myself he will get better at wearing them...boy was I wrong.  I got him up and dressed, banded and glasses on set him in his playpen with his bottle and walked to the kitchen to set the lid from the bottle on the table, turned around and he had them in his hands already. I ran to get them, but too late, he already had them bent and the lens falling half out. I just wanted to sit down and cry. I decided that I had, had enough for a while and we would wait till tomorrow to call the optician yet again. I later e-mailed CT and have spoken with his OT and they are working with me on a solution. I also put a call in to his opthamologist for some more helpful hints. Wish me luck that tomorrow is a better day.

Well we have tried every strap they make, but they either do not work or interfere with the band, so we will just have to keep putting the glasses back on when he takes them off. Most babies get used to the glasses more quickly, but it seems that being able to see everything is a bit too much for Dominick with his sensory issues. Dominick is having alot of melt down fits when we are at the grocery store or out of the house. His head goes one way and then the other, trying to follow all the sites that he can now see and I think it just overwhelms him. It gets to the point in the grocery store that I have to hold him and he buries his face in my chest and I have to hold him as tight as I can. It can take a couple hours for him to calm down after a trip to the store. He has also started his high pitched screaming again. He uses this in place of his verbal  and it can be very trying since it's so high it makes your eardrums vibrate. It makes me a little nervous because I am not sure how much is because of the glasses and how much is just a new issue for a new age. I have called his OT at Early Intervention and we are going to give him a couple weeks to try and get used to them,but will still go ahead with another complete OT evaluation.  We have decided to try the glasses in small spurts to try and get him used to them. Hopefully we can get him adjusted and the sensory issues will calm down again.

Well it's been almost two weeks and Dominick is doing a little better with his glasses. We have been doing small intervals at home and can now leave them on him ( as long as someone is there) for extended periods as if he is busy. He isn't trying to pull them off unless there is something touching them or he rolls on his face,lol. We put them on him on him to go into the store and he didn't completely freak out this time. I found that if I put him in his stroller with the top up it works kind of like a horse with blinders on. About half way through the store he actually got tired and started to fall asleep. I guess it is going to be small steps. As far as a strap to hold them on, we will wait till he is done with his band and then get one to hold them on while he plays. He is still having some sensory troubles, but his OT will be coming soon.

Band Three Is Working!!

Well it's been a little over a month and I must say I am about as happy as I can get. On the 17th of August we had our appt. at CT and you cannot believe the progress he has made. The back of his head is rounding so much, it's hard to tell that he ever had plagio. The best thing is that he is definitely getting the needed growth in his right forehead and we are not seeing any huge bulging of the bone over the ear. All I can say is Jeanne Pomatto you are an amazing woman. At our visit Angela and Leslie were so genuinely overjoyed with the progress in the last two weeks. I love that they get so involved with Dominick that you know they really care, isn't that what we all want as parents in a doctor or therapist, wouldn't it be wonderful if we could have them all like that. Anyway, he is still improving and growing well so I can only imagine the progress by his next appointment.

As you can see I usually have the bands decorated by now, but things have been crazy around my house and school is starting so I am a little behind. I will get to it this week, so I can submit for the CT calendar. We had to take a break from the glasses because he was taking them off as fast as we could put them on. I decided to give him a small break and now I am starting him back a little at a time. I had to postpone his sensory evaluation, but he has calmed down somewhat. I'll take that as a good sign for now.  Hopefully he will adjust a little better this time. He is doing ok with his feeding, but we seem to have stalled a bit. I can't worry about that right now, so I just try and keep up with his growth using stage two and lots of cereal. He certainly doesn't look malnourished,lol.

Onto our latest accomplishment......WALKING! Yes he started walking. I cannot believe that this is the same little baby who could not do anything other than lay flat on his back. Now life really gets interesting.   Quick, Go buy more baby gates,LOL!!!! he can take about 5-7 steps without falling and even tried to run once. It was so funny, he saw his brother run by and got so excited he wanted to try it himself. Needless to say he made it about two steps before going down, but he was still really proud of himself. That's ok, I don't think I'm ready for running just yet anyway.

Well I finally got the band decorated. I decide to do a couple of cute little lizards on the back and a small thank you to some of the people who have helped us through this. On the front it has his name and a CT logo on his wave. Ok so it's not the elaborate decorations I usually do, but I wanted to say thank you and time was short with school starting and everything. You can't see the white duct tape we have to put on the velcro closure now,lol. I am thankful that he didn't figure this out until now, I can't imagine what it would have been like if he knew how to take it off from the start,lol. You can see the back in his photo album for decorating the bands.

Happy First Birthday, Dominick!

Well, on September 10th, 2005 Dominick turned one year old. He really loved his birthday and we all had such fun. We didn't have a big party , we had just the family because I wanted to just enjoy my baby being one for awhile. It has been such a hard road to get here and I know he won't be little  for much longer.  It was not only a day to celebrate, but a day to give thanks that my boy was happy and doing so many things that we worried so much about him never doing. He loved his presents and played with his family and was even able to eat cake. I made a cake I thought would be the easiest for him to try without overloading his sensory issues. I chose a white cake, with vanilla pudding in the middle, and homemade whipped cream icing. We didn't want too much food dye in it, so we used the fondant to decorate it with Elmo, his favorite. He tried it and loved it. He loved it so much that when it was gone he tried to eat the plate too,lol.  I am so very thankful, that we had been so blessed.

On the 13th of September we took Dominick to CT for his appointment. He has been in band #3 for 8 weeks and we are seeing incredible correction once again. All the areas we were concerned about are filling in and I think his ears are looking more aligned. The bone above his ear that was trying to push out  has been kept in check with only a small amount of further protrusion. The progress in this band has been an amazing thing to watch. Each week we see the correction in the areas we hoped the band would address and each week we watch our concerns fade away. Just look at that round head in the picture.We think he may go another four weeks in his band and then we'll do an exit cast. I am excited , but a little sad about his graduation. I know that may sound strange, but this band and the people at CT have been part of our lives for the better part of Dominick's first year of life.

DOMINICK IS A DOC BAND GRADUATE!!

After three bands and seven months on September 27th, 2005, Dominick is a Doc band graduate...woohoo!!! I can't believe it. It still hasn't sunk in all the way, but I am so happy. I will write the whole story and all the details as soon as I can, but I wanted to share this news with the plagio world as soon as I could.

Ok, Here's the how it went. We went for our visit on the 27th expecting to make that last tiny adjustment left to try and give him a week or so more, but circumstances changed our plans. He had just finished a big growth spurt, so we sat down and tried to decide what chances of more correction he might get from wearing the band another possible two weeks. The benefit would be he might see a bit more improvement, but the factors against those chances were big ones. Like I said he had just finished a big growth spurt and they don't come as often as when he was little, he had started teething again and they don't grow well when teething, and he was working on perfecting the new walking ability, and they don't like to grow while they are working on a big milestone. Added to this was the fact that he was to see the opthomologist again the next day because he still wasn't keeping his glasses on, and with the band on we could not find a feasible strap solution. All these factors made the decision to graduate a tiny bit early the wisest choice. So TADA! We have a graduate! It is funny, it has been almost ten days and last night Scott said after he picked him up out of his highchair,"Did you clean his band?". We are scheduled for Oct.11th to do the exit cast and photos. It is nice to know that this is the last casting he will go through, even though he has always been so good for them. I cannot wait to see the exit pictures, and when they collage them to show the improvement over treatment. His should prove to be amazing.

The Sensory Profile

Tomorrow,Oct.7th,2005 we will be doing a sensory profile on Dominick. We are hoping to see what has improved with these issues and what if any are still causing problems. He has settled down some about seeing the world in focus with his glasses, so that is a relief, but he has started some other little things that worry me. It is so hard sometimes, because I never know if I am just worrying too much about nothing or if it is something that will lead to bigger issues later. I try really hard to say just let him be a baby and develope the way he is going too, but I always think that if it is something that could cause a problem then I should jump on it so no milestones are missed. It's a never ending cycle,lol. Oh, well I guess that's just being a mom. We have noticed that Dominick is doing some things that he did when he was very young, like kicking both legs down on the mattress when trying to go to sleep. Going to sleep is an ordeal for him, or maybe I should say settling down to go to sleep is. If I try to rock him, he flops all over my lap, from back to belly and belly to back, he hangs his head upside down or bangs it on the arm of the chair, it is very hard to hold him. If I try to hold him still and rock, he gets upset, but that's what I have to do some nights. He must be rocked fast and he likes any singing or music to be very loud. We discovered one night that if I almost yell the words he settles down faster, so odd. I am afraid that I will end up rocking the boy until he's three if I don't figure this out. I have been putting him in his crib when it's too hard to hold him and letting him cry it ou, but you can hear him throwing his body all over and I worry that he will get hurt. He does eventually go to sleep, but I'm sure I'll be doctoring the bloody lip on occasion. I know that it is best to let him go and do it himself so that's what I am going to keep trying. Wish me strength!!

Dominick has several areas of concern to us right now, som are getting better and some are just stable. His speech is doing ok, I would feel better if he added a few words to his vocabulary of Mamma, Dad, and Nah(No).  Oh wait I almost forgot he does try to say "Anthony Get Up!",lol, that is what he hears every morning over and over when I'm yelling at my 15 year old. He basically mimics the sound and pattern of what he hears so I am hoping that the words will follow soon. We play lots of sound games with him and make funny faces to help him along. Speaking of sounds, he is a one man sound effects machine all day long. Any sounds he hears he immitates, it is funny, but sometimes you just don't want to hear the sound your body made coming back in an echo,LOL.  We go through the day without even realizing anymore how we have adapted to his needs. There must be a special feeling blanket available at all times, the really soft, thick,  fuzzy ones . He will not calm down if he doesn't have that for sleeping or when upset. He has also taken to this big pink, soft ,shaggy pillow that my 5 year old got for her birthday, so we went out in search of a blue one, but could only find orange at JC Penney so that is what he has now. His clothes are mostly all cotton and he takes them off when ever he can, so we now put size two training pants over the diaper so he can't get his diaper off anymore. You can see how happy it makes him to strip down in the photo album called"Dominick,Where's Your Diaper",lol. His newest issue is biting. This one makes me crazy. He is just not biting me, he bites everything and really, really hard. I keep waiting for him to break teeth. He will bite the table, the highchair tray, me, toys, blankets, tried the cat, but that didn't go over well. He also grinds his teeth. Talk about making your skin crawl. I have noticed a couple times over the last few days that he wants to bang his head again, boy I hope that doesn't start again. No band to save him this time. Maybe it's just getting used to not having his band again and it will pass quickly. Hopefully tomorrow we will know a little more.

Well we had our sensory evaluation on the 7th, it was done by Dominick's OT, Elizabeth. I love Elizabeth, she has been so good through all of this with us and never makes me feel like Im just being too worrisome. Dominick also likes her a whole lot, which is very important.  We discussed all the concerns I have previously written about and talked in deatil about how they affect daily life. We talked about ways that we have come up with to help Dominick deal with these issues and what we need more help with. At the end of the evaluation we spoke about some things to try and some things Elizabeth might bring with her next visit.  When it was all said and done, it was bittersweet. It was so good to know that I wasn't imagining things, but at the same time it is always hard to know you have more work ahead to help your child strive for a more normal life. Elizabeth feels it will help to see Dominick more often, about every two weeks or so. She will take the paperwork I filled out and score it to help give her a better outline of Dominick's issues and be back to see us on the 21st. While we wait, we are starting Wilbarger Deep Pressure Protocol as per her request. This is a brushing technique followed by joint compressions. You use a soft nylon brush like a surgical scrub brush and do the palms of the hands, soles of feet,arms,legs,and back using a back and forth motion while applying firm pressure. This is followed with joint compressions to the elbow joint, wrist joint, metacarpal joint, knee joint, ankle joint and three compressions to the chest. We also do compressions to his upper and lower molars and palette because of his oral sensory issues. I was a bit skeptical at first but became a firm believer quickly. When Elizabeth did it to Dominick, I watched his whole demeanor change. He became more organized if that makes sense and was better able to focus on the things he wanted to do. He liked it so much that when he was done he took the brush and rubbed his own little foot with it.  We may be experimenting with some weighted blankets and vests and possibly a compression vest to help his need for deep pressure stimuli. All these things will eventually help with his overly high pain tolerance and his inability to soothe himself in certain situations. I am confident that we are on the right track and with Elizabeths help we will make great progress. Just to let you all know how well the brushing seems to help Dominick, listen to this. I have talked about the bedtime routine and how hard it is on him, well the first night we tried it, I did the routine and then gave him his night time bottle. When he was done with his bottle I picked him up still wide awake and took him to his crib. I layed him down expecting the usual, kicking and throwing himself around trying to settle, but to my surprise he laid down snuggled with his blanket and never made another sound till morning. Thank you Elizabeth, Thank You!!!

We had been doing the deep pressure protocol with out a problem for several days and then all of a sudden he didn't want it done anymore. He likes the pressure, but hates the fact that to do it I have to hold onto an arm or a leg. I am continuing to work on a way to do it that he accepts so I can try to complete the protocol. His settling to sleep is still better than before, but not as good, so we will keep working on it. I will see what Elizabeth has to say when she comes again. We have also been working on learning sign language with Dominick as per Elizabeths' tip. She was thinking since he is more visual, he may respond better to the sign language in combination with verbal cues. Well it has been hard to teach myself, but Dominick picks up quickly. He can already sign Daddy, and More, and tries I Love You. What a smarty pants! I love the idea of him learning signs because it gives him another way to communicate when he cannot verbalize something. I am thinking if we can stick with it, it might really help with the terrible twos.  He pays better attention when I sign along with what I am asking or telling him, so hopefully it will be a good tool. I am not sure how much work we will get done next visit because we will have to go over the profile and now we will be also setting up new IFSPs(individual family service plans)from EI for Dominick.

Exit Casting and Pictures

On October 11th, 2005 we went to CT for Dominicks' exit cast and photos.  We took along balloons and cupcakes and cookies for all the staff to celebrate Dominick's graduation. After some fun and chatting we got down to the business of getting his pictures done. Dominick was a bit stressed on this day and it showed when trying to take his pictures. You can see his expression in the face shots and it was difficult to keep him from tilting his neck due to his stress level. Tracy even had to hold his head straight to get a few shots. Poor boy! Then we went into the room for casting and he was not happy right from the start. He wanted to play and get off the table, not get a plaster shampoo,lol. I can honestly say I am so glad he was not like this for his other castings, because he was not a happy boy at all. Thankfully he was more verbal than physical in his protests. It was over quick and we got a good cast. The minute we let go of him he was happy again and knew it meant he would get his bath. He loves getting the bath after it, I guess it the combination of being so calming and the fact that he gets to be naked and nobody yells at him,LOL. Everyone said goodbye, it was really hard, but we'll be back to pick up his headmold from the exit cast.

Tracy emailed his pictures to me. They are the first evaluation pictures side by side with the exit pictures. All I can say is WOW! The facial asymmetry correction is absolutely amazing, as is the correction of head shape in general. Now this may seem silly, but when I first looked at the pictures, I was really happy, but as I looked at them over the course of the day(probably a million times,lol) I kept seeing the areas that couldn't be corrected, like the bone above the ear. It really upset me and I was honestly thinking of calling and talking with Angela and Leslie about it. I decided to post the pictures on the Yahoo Plagio Support Group and see what others said. Well the reaction was all positive. I called my husband and talked about the way I was feeling and he said," his head is amazing, stop worrying". It took me a while to get past this, but I finally did. I realized that I had to face the fact that these are the areas that everyone at CT explained may not correct, but it was hard to come to terms with the idea that my baby would have this the rest of his life and there was nothing more that could be done. Once I did get through it, I looked at Dominick playing in his play yard and saw a beautiful head that probably looked better than alot of babies out there. I don't think anyone will ever be able to tell that he was as severe as he was, unless they too are a member of the "plagio police",lol. Now when I look at the pictures I see the positives only and I am so happy. So if this happens to you at the end of treatment, you're not crazy, or ungrateful, you're just a mom that loves your baby and wants only the best for him or her.

Update On The sensory Issues

We had our visit from Elizabeth (Dom's OT) and Carla form EI today. We set up new IFSPs and talked about his sensory profile scores. Thankfully when everything was put together and the scoring done, his issues are mild and we can probably work through most of them in a few months. When she gets time to put a whole report together in writting then i can probably explain it better and hopefully I will understand better.We didn't get a ton done at this visit because we had alot to talk about and goals to go over. 

We are going to keep working on his feeding skills, trying to get him to take more table foods and chunky foods. He has good days and bad days,one day I give him something and he does ok and the next I give him the same thing and he chokes and gags. We did let him try Bushs' baked beans and he loved them,LOL. I'm just taking it slow and I still supplement his diet with at least three bottles of formula a day or 4 when he won't eat his breakfast or lunch. I will be ordering some chewy tubes to help redirect his biting to something appropriate. It's easy at home to just give him a toy to bite on, but when I'm out running it will be good if I have one or two in the diaper bag. They are safe, non-toxic plastic tubes shaped like a T, that I can give him to bite when he bites on things like the table, or his sister and brothers. I will probably also order another vibrating mouth stimulator too. I will be looking into info. on a play group in my area to help with his social skills. Early Intervention thinks he needs more interaction with babies younger and older. I am not sure how I would do this as funds are limited and if he is out of the home enviroment he is a different baby, but we'll see.  As long as he continues to keep going to bed without too much trouble most nights we will continue using the same method we have been using since he stopped his brushing. Next visit we will try and go over more things that I want to work on and get any tips from Elizabeth that she feels will help. So not a huge change but that's the way thing go lately, slow. I am kind of dissappointed that we didn't get more help with certain areas, it is hard when they do not see what I see on a daily basis. I guess when he doesn't display an action I am concerned with while they are here, they don't really address it.

You may have also noticed that Dominick does not have his glasses on. Well we are waiting to see another doctor to be sure he is being treated properly. He still will not wear them and the same doctor that cares for him also examined my duaghter and told me her eyes were fine. She has since failed two school eye exams and one at the optomitrist and is now wearing glasses for being nearsighted. Yes, I am freaking out, thinking about wasted time, money and hoping more damage hasn't been done. I will let you know what happens when I see another doctor a "pediatric" specialist this time for sure.

To Cranial Technologies Inc.

I would like to say thank you to everyone at Cranial Technologies who put up with me, my silly questions, my sometimes unruly kids, and my endless worrying. Without you all Dominick may have faced a future much different than the one ahead of him now. I know I have said it before, but I will never be able to put into words what you have done for our son. I have never been made to feel so cared about and comfortable through out such an important meadical treatment by any facility. You not only welcomed our son and us, but welcomed his siblings as well to any visit they wanted to or needed to attend. Never once was I made to feel like a number, not even on the busiest of days or when I was running late for an appointment. You answered question after question without ever making me feel like an inconvience or a bother. You indulged and encouraged my need for further education on the entire subject of plagiocephaly and all it's associated risks. You watched my son grow and cheered every milestone right along with us. You gave encouragement without raising unrealistic expectations. You cared about the quality of Dominick's life as a whole not just weather his head was rounding or not.  I never could have expected all this when I walked into the Annandale office with a then tiny 4 month old boy and a million fears and questions. As for Angela and Leslie, the best OTs anyone could ask for ( yes I'm biased,LOL ), you know you will forever be a special part of our lives. Thank you all from the bottom of my heart to the top of my Dominick's beautiful round head.

I'm Worried About Regression

       HAPPY HALLOWEEN EVERYONE!!!!

Well it has been a month or so since Dominick has been in a band and I swear I am seeing a change in his head shape. It is in the area of the bulging over the left ear and a bit in the back.It's hard because you end up looking at it so much that you are not sure if it's just you or it's really there. His head is absolutely tremendously better than he ever was and I have no regrets for having banded him, so don't think I am unhappy in the least bit, it's just I am scared that we will lose some of the correction we got. Because he is an inutero case and his head wants to grow on that darn angle, I hope it doesn't mean as it grows it will get worse.  I can drive myself crazy with this, so I think I will email CT and talk with his OT's. I'll let you know what happens after I get some more info.

OK, I went to my parents house this weekend and asked them if they thought his head shape has changed, I was really expecting to hear that they didn't see anything, and then I could go on without worry. My Dad said he thought he was a bit different than when he first graduated, and wanted to know if they could do another band if necessary. So, that throwing me over the edge,LOL, I finally emailed CT. I told them of my concerns and as usual Leslie was great. She never made me feel like an idiot and took me very seriously. We talked in detail about the areas of concern and because it is an area where sutures are, they decided maybe we should see a cranio facial doctor just to be safe and be sure nothing else was going on. We would go to CT first and have another photo study done to bring with us and then go to the Cranio clinic. I will write more after we go to this clinic.

On the 3rd of November we went to CT for the photostudy and then to the cranio facial clinic at INOVA in Fairfax,Va. The usual doctor(craniofacial) was not able to be there, but we did get to see the nuero doctor.  Here's how it went.  First off the photostudy helped alot.  There is a couple small areas in the back (that low area that was so hard to get to fill out and a little up higher) that have kind of sunk back in a bit that you can see from the side shots. All in all the pics made me feel alot better. If he doesn't change from this I am happy as can be.

We then saw the nuero. He looked at Dominick and said that he was a beautiful baby....well DUH,LOL. I brought some early pics with me and he said it looked like he was crammed in there pretty good,lol.  He said that the he could see the asymmetry that remains and the ears still out a bit, but was amazed at the correction he recieved from the bands. He said that  he was banded for a long time so his head is just making it's shift to being out of a band. He said if you look at him from the front his facial asymmetry was corrected and looks great and as far as his head goes, no one has a perfect head and he still hasn't gotten his hair to cover it or anything. Basically anything there was just cosmetic and nothing cranio. That is a great relief.

He said that the bulge is the Temporalis muscle and nothing bony and something about when everything was shifted forward, but at that point was kind of in that mumbling doc mode(you know when they are thinking out loud,lol) so I couldn't get it all. When I asked about regression he said he would be surprised the chances are slim that this happens, so I assume that is the same info I already know...less than 1%. He will check him again in 6 months unless I notice any further flattening or bulging or if I am comfortable with how things are going in a couple months I can cancel.  He was concerned about Dom's eyes, but I told him we had an appointment in Richmond with a specialist and he was happy. He said the vision problems may or may not have been a result of the plagio.

I am happy to know that what we are dealing with here is not cranio in nature and only muscle and headshape. A Big Sigh Of Relief!!  I can't say I was thrilled about the hair will cover it stuff , but he is a nuero and to them this is no big deal, a big deal is pressure on the brain. That is where the "hair will cover it" and "it's only cosmetic" comments come from. I haven't read anything on the head getting used to be out of a band or heard anyone else say that after the band the kids headshape changed around a bit, other than the fluid going down. I am really glad we got in because I look at this visit as calming  that nagging fear of what if we missed something more serious than headshape alone and it did that. I wish we could have seen the cranio facial doctor because it would be interesting to hear his comments on the headshape as compared to the nuero comments. Would he have said "it's only cosmetic" meaning no big deal, or would he have seen the impact of an abnormal headshape on a person's life.

So although I feel better about no cranio problems, I am still worried about headshape and regression. I talked with Leslie and we decided that we would wait for the headmold to come in from AZ. and compare that to his headshape now. Until then I am going to try and not obsess with it. Besides I have the eye doctor to deal with now.

A NOTE ABOUT REGRESSION: Regression is very rare, less than 1% as a matter of fact. There are predisposing risk factors that can contribute to regression such as, being very very young at treatment end, and having unresolved torticollis at treatment end. Please remeber that Dominick has an inutero case of plagio and because of that his skull is actually deformed and it's growth patterns permanently altered. Most parents will never have to worry about or deal with regression. It is normal for many parents during the first week or so out of the band to suddenly have an overwhelming fear that the head is changing, but this usually goes away as you adjust to life without a band.

School System Screening

On November 4th, our local school system had a Child Find Screening for kids birth to age 5. This is a way for them to identify at risk kids and get them on the right track before they start school. I took Dominick in and they did a full screening except for hearing and eyes because we are already taking care of those issues. I was expecting to hear that he was doing ok and was on track developementally, especially because EI has not showed any concerns about him. Well after he was done with the screening and we met with the director, they feel he is either just barely right at the mark or just under it across the board for his age. They feel it would be best to get a child study team together for him. As much as I am not thrilled with this, at least he will have a full evaluation by everyone including the elusive speech therapist. This only confirms my fears that Early Intervention is not seeing the whole picture of Dominick in the hour long visits every couple of weeks. I don't know how long it will take to hear back from them about the team being scheduled, especially with the Holidays coming up, but I am looking forward to it. We have had more sensory issues pop up, and changing his routine is becoming increasingly harder to do. He still is not doing things that he should be at this age and I'm running out of answers and ways to help him cope.

The New Eye Doctor

On November 18th we went to Virginia Eye Institute with Dominick to see a new pediatric opthamologist, Dr. Brown. The place was beautiful and the staff excellent. They had a nice pediatric waiting area with toys and a place to play out of the way of big people's feet. We took him into the exam room which was spacious and comfortable and he was first seen by one nurse. She took the history and did some basic exams, and then said that another nurse would be in to dialate his eyes. The second nurse came in and repeated almost everything the first did with a few more things checked and then dialated his eyes. The funny thing was that I noticed everyone who dealt with the kids, had pockets full of little toys and items to help keep thier attention. One nurse even went as far as putting a big ticker on her nose to help Dominick look right at her,lol. Each room also has a wall of different lights and moving stuffed animals that make sounds to help them look in the directions they need to. I loved that they went the extra mile for him. We went to the waiting area to wait for his eyes to fully dialate, again he played and had a snack. When we went back in the exam room, the doctor came in almost immeadiately. She repeated all the tests the first two did and then began the examination of the inner eyes. I loved this double checking of his eyes, it made me feel very confident. The hardest part of the exam for Dominick is always when they push that big machine right up into his face to look inside the eyes, well no problem here. The doctor wears an instrument on her head and it replaces this machine, so Dominick did much better. She was conscious of his sensory issues and was very patient with him, even when he wanted to put his head on everything she put in front of him,lol. I would get a bit upset and she would tell me it's ok, he just doesn't understand, we'll be fine. She then checked his old glasses and his old prescription to see if they were ok. 

When we were all done with the exam, Dominick was allowed to get down and play on the rug while we talked. The doctor started out by telling us if there is anything or any word that we do not understand to stop her and she will explain it until we fully understand. This was impressive to me, a doctor who actually wants you to understand and be involved in your child's care,lol. It turns out that first of all, his frames were too small, and his prescription was way too strong. No wonder the poor kid wouldn't wear those glasses. This makes me so mad because I called and took him back to the first doctor and did everything to be sure there was nothing wrong, and was always told "he just needs to wear them". His right eye is starting to lose vision from the strabimus(crossing) not being corrected. This is what I was trying to avoid by taking him in so young. Dr. Brown prescribed him new glasses and we ordered new frames too that fit better. Once he starts wearing the new glasses, we have to then put a patch on his left eye for an hour a day to help strengthen the right. Unfortunately his eyes do not want to straighten out all the way even with his proper prescription, so he will more than likely need surgery on the muscles. We will try to get him to wear the glasses for six weeks and then go back to see how far off the eyes still are, this will help make the surgery more fine tuned, you don't want to overcorrect the muscles. The only problem is that he is so upset by the first glasses that he may reject these ones too, and if we cannot get him to wear them in the first two weeks we will have to call and possibly do surgery sooner. Dr. Brown said that sometimes kids come back in the six week time period and a rare few surprise her and are fully straightened out with just the glasses, we can only hope.  I'll let you know how it goes when the new glasses come in.

Dominick's 14mo. Well Check

Dominick had his well care visit on the 19th of November. He has finally gained a bit of wieght, he wieghed just under 23LBS. All in all he is in good health, thank goodness. He needs to keep up trying to eat better, and we will not discontinue his formula until we can safely replace those calories with good food. This is of course expensive, but for the best. We did talk about his headshape and she did say that his headshape does look different than when he was in right after graduation. She remarked on the back area being sunken back in, and agreed that his rounding was more angled looking. She felt that if another band could be done that would be great, but would leave that decision  up to me and the expertise of Cranial Tech. This didn't make me feel too happy, but I've already come to terms with it. She wanted to know why Early Intervention has backed off on therapy lately and hopes that the Child Find Team will help with that. She sees his sensory issues, as did the entire nursing staff of a three doctor family practice office when it was shot time. Picture it: The door opens and in comes a line of nurses and techs all expecting something a bit bigger than my little Dominick,LOL.  The shots do not bother him, but to hold him down makes him uncontrollable. Most did not believe the shots weren't the reason for the fit and gave the speech of" it hurts when they get poked and then for a bit afterwards, but then they calm down" until all piled on while one gave the shots to this little Tasmanian devil, and as I explained it to them and Dr. King counted down the release, 1,2,3 and the minute all let go he sat up and was quiet as a mouse. Very angry but no tears at all. Let's just say mouths fell open,LOL. This is one of the problems with Dominick, he does not react to pain the way most children do. This is why he can beat his head on the side of his playpen until it is bruised and never shed a tear. I'm glad he has no other medical problems, except the eyes or I think I would go crazy. The ped. said that if I do not get more help from the child study team and EI, she will refer me to someone else for evaluation and help with the sensory issues. So healthwise we are good to go until March.

End Of November Update On Everything

OK, I will put an update about all the loose ends in one post,lol. Let's see we'll start with Early Intervention. I have no follow up appointment with them, and have called his OT to tell her about the cranio facial visit and the temporalis muscle, and to ask for help with some more sensory issues, but have not gotten a call back. Nothing from the Child Find child study team yet either. The headmold from AZ. is not in yet, so I don't know anything new on that either.

The kids brought me home a head and chest virus two weeks before Thanksgiving and just when I thought I was feeling better I woke up with a fever and feeling horrible. Turns out it went into pnuemonia. I just finished my antibiotics and am feeling better, but am really tired.  Dominick came down with Coxsackie virus right after Thanksgiving, so that has been fun. It causes blisters in the throat so he is barely eating or drinking anything. His big sister (5) has just come down with it too.

We did go pick up his new glasses and it looks promising. He has already been tolerating them more, but I am not pushing too hard while he feels lousy. Hopefully he will adjust and wear them for the six weeks. The biggest problem we have with them is that the ear pieces are causing a trouble, they want to slip forward. We may need to use two different ear pieces because of the ear misalignment, one ear piece is ok, but the other ear pieceis too big.

I did find a new sensory support group and the people are wonderful. Everyone has been very helpful and willing to share and talk. It's always nice when you can find people who are in the same situation as you.  So that's where we are for now.

CHRISTMAS!!!!!

Well Dominick just loved Christmas. First on Christmas Eve we went to my parents house and all the kids got thier gifts from them. Dominick had a ball. He takes a little time to get going, but eventually didn't want to leave. I tried to schedule it so we wouldn't be out too late and he wouldn't get all out of sorts. I was even able to snap a picture of the whole bunch on thier way out the door.

Christmas morning was so much fun. It was so great to have him old enough to really get excited and play with his gifts. He saw that Frankie was handing out the gifts and so he decided that he was going to do it. He would go over to the tree, pick up a gift and throw it at anyone who happened to be close,LOL. The trouble was when you were already trying to open one and he was throwing and I do mean throwing, another one at you,lol. The kids all had a great time. Funny how everything just fades away and they all seem so little again on Christmas morning, even the 15 year old. Dominick recieved some great new toys and some clothes, his favorite was his drum set with all the musical instruments inside.

We had a nice dinner of ham and all the trimmings, and Dominick ate what he could. Of course I made him his sweet potatoes. Basically we tried to just relax and enjoy time together. Not so easy for mom who has to cook and clean up, but it was a nice day all in all. It's hard to believe that this is already his second one.

Vision Update: Glasses and Patches

We go to Richmond tomorrow to see the eye surgeon
and find out about surgery. He is wearing his glasses better, but the
patching has not started yet so I don't know if they will schedule
the surgery yet or wait and see how that goes. Either way I'm
prepared for the worst and hoping for the best.It will be good to have the answer.

Well we went yesterday to Richmond and I was hoping to at least have an
answer about everything, but noooo,lol. Actually it's ok. As I said I
was unsure if the fact that we had not started the patching of one eye
would delay things and the answer is YES. Because the brain can be
amazing at times, the dr. would like to let him wear his patch for two
hours a day now instead of one for 4 weeks, to see if it will help with
the crossing at all. I am glad that she is willing to exhaust all
options before jumping into surgery but we only have a small time frame
so that is why it will only be for 4 weeks.Sometimes if the vision in
the weaker eye is strengthened(by patching the stronger)the brain will
get that muscle acting right, but it is a very slim chance. I have been
thoroughly prepared for the fact that he probably has two problems, one
vision and the other muscular and it will more than likely take the
surgery to correct it but still why not give the patching a try. We go
back on the 7th of Feb. and we will schedule the surgery then unless by
some miracle the patching works. What's the worst that happens, he gets
better vision in the weak eye.

We started the patching for two hours a day and it is going much better than I thought. He doesn't like when we have to hold him to put it on, but once it's on he's fine. It takes a bit for him to get used to not seeing anything on that side and we get hit in the head a few times,lol. He does the funniest little things to make up for not seeing out of that eye, he turns his head all sorts of way and he plabts his feet and turns the rest of him almost all the way around, it is so funny to watch. You can definitely tell that his vision is worse in that eye when the patch is on that's for sure. I was really afraid about taking it off, because I kept thinking it would pull his skin so badly, but it comes right off and hardly leaves a mark. So far he has shown no signs of the adhesive irritating his skin so that is a relief. Now we just keep this up and wait to go back to Dr. Brown.

Regression Fears Update

As many of you know we have been worrying about a regression of sorts. Regression is really a word I don't like to use because Dominick's is not like a true regression it is more growth changes in a skull with permanent deformity because his plagio was inutero. You see because of how he was inside my tummy his skull now wants to grow on an angle, add his severe plagio to that and well lets just say it's been fun trying to correct,LOL.

What we have been seeing since his graduation in September are growth changes that have made his headshape look off to me again, especially when I look at Dom from the back.. I have been in contact with his ot's at Annandale the whole time this has been going on and they have been wonderful. We had a bit of a wait for the exit headmold to be sent back to Annandale, it seems they kept thinking it was a new headmold in AZ. I think they just love the fabulous correction they got and wanted to keep it to show off,LOL. Well finally it arrived and we went in on Monday. We had more pictures taken and measurements done and then sat with Angela and Leslie to look at, compare the exit mold to and talk about Dominick's headshape now. I thank them sooo much because I know I took forever with them and they were still so patient.

  This is how I would explain in plain language what is going on now. When compared to the exit mold we are able to actually see some good growth changes post banding...yippie. There is some more rounding in the higher area where he was the worst and the forehead on the rightside has grown out very nicely. The problem area is lower down where he has always been the worst, it is lumpy looking and still a bit sunken in. The hard part is that because he has had some of the good growth above that, it makes this area look worse to me. Now please remember that I have spent a year staring at this head,lol, and honestly without me saying something I'm not sure someone would pick up on it, but I am a full fledge member of the plagio police force. This area has always been a problem and it is where the angling comes into play with his headshape, so there has never been any garauntees as to how much correction we could get there. It is actually one of the areas that was in question with doing a band three.

That all said, this is what I am feeling. I am so happy he has had more rounding, I have always known that Dom will never have a perfect head, I am amazed at the correction he recieved (I never thought we would see this much at the beginning), his face is amazing too (it's perfect), BUTTTTT his ears are still off some, and this lower lumpy area that I constantly see while running behind him all day just jump out at me. There is a big part of me that says, "Where do I get off thinking what if we did another band, when he has already come so far, am I being petty and looking for perfection?" and then there is a part of me that says, " Well we had no garauntees in band three, but it worked and what if a fourth band works too, they say a fourth would fit pretty much like the third one?" That damn nagging feeling of this is it!!! The last chance ever to do anything about it!!!! Of course I also feel like this has been a long process so far, one I will never ever regret,but" do I want to do this again?" "Is it worth the money and time and travel?" " What if it doesn't work?" Now the ot that has treated Dominick since the beginning, said that she would support me in a fourth band if that's what I decide. She also said that if I would walk in off the street with him now that she would consider him mild and it would be one of those cases that would be left to a parent to decide. Because this is such a final decision I want to be completely sure of it so I am thinking about it a few more days. So now I ponder....is there a band Four in his future?

                                                     The Final Decision

I laid on my couch this afternoon (Friday January 13th) with my Dominick sleeping in my arms. As I was snuggling against his little head, I realized just how far we had come. This was a baby that was stuck flat on his back, unable to move off his flatspot just one year ago with a headshape that would make me cry everytime I looked at it. Then CT entered our lives and performed thier miracle in the form of a Doc Band, well ok, three Doc Bands,lol. Now his little face is not twisted up and his ears are better than they were, and he has an almost round head. I have decide that we are done for good!!! No more bands, no more obsessing about his head! I know that he will never have a perfect headshape, but once his hair finally grows and he gets more post band rounding it will be noticable only to me. It is hard to stay objective when it is your baby, especially when a great deal of your time is spent examining pictures of and talking about other babies with plagio. I know after holding that little boy this afternoon that I have done everything I could have for him and I am honestly happy with his headshape just as it is. I even started thinking....he really wouldn't be my Dominick if he had a perfect head would he?? That will have made Dominick's last appointment at CT on 1-10-06 exactly one year from the day we walked in thier door. How fitting is that!!

                                          JUST THOUGHT I"D SHARE A LITTLE HOPE

Dominick will be 17 months on the 10th and is still growing quickly. This is a pin when it comes to clothes,lol, but has proven to be a good thing when it comes to his headshape. After watching his last growth spurt make his headshape look worse, I am now seeing this growth spurt filling in a few areas that make it look better. I mean he is still a bit of a bumpy headed little boy, but maybe over time some growth will help these areas look smoother. If I could only fast forward a couple of months,lol.  While at the eye doctors, one of the nurses called over the entire fron office staff to see Dominick because in her words," He was just so perfect,so handsome". Yes, I was beaming, but I was also thinking if they only knew,HAHAHA!

                                       

Sensory Integration Issues Update

His sensory intergration issues are all over the map, and once I can get my life in order here I have to call his regular OT today for another appointment. We are finding different ways to help him cope with his issues and he is doing good. He is learning sign language and now signs "eat" when he wants food. He is really pushing the limits with sensory seeking issues....falling backwards in his playpen, banging his head or hitting it with something,you name it, if it gives him input he's doing it,lol. We bought him a stuffed animal vibrator bear from Walmart which has been a wonderful tool. He likes to stand on it and vibrate,lol. Music has proven to be his favorite thing. He loves all music, but especially went crazy when BB King played the blues. He was bobbing and swiveling...looked like a mini Stevie Wonder,LOL. I am glad he has found something he likes so much, up till now nothing has held his attention. He has finally found something he will watch for more than a second...the Elmo's World videos......Yippie. He mostly just repeats the sounds and dances when they sing, doesn't really watch it long, but that's ok. We will see what happens when his OT can get out here.

We had Dominick's OT visit from Early Intervention yesterday and it went great. I am so relieved because I was getting so discouraged. I finally had gotten the OT's email address and was able to write out everything I needed to tell her or that I was concerned about. This helped alot and will be something I will do from now on. I talked about how hard it is because they don't see him day to day and when we are out and about. Well Dominick decided to be fully cooperative yesterday and showed off his many sensory issues. He is what is called a sensory seeker. Fast movement, loud, obnoxious, rough playing, can't relax, hitting themselves, banging heads, anything that gives them big sensory input. He also has mixed in some social and emotional sensory issues. Takes a long time to adjust to new surroundings, people, objects, toys. Also does not tolerate changes in routine well at all. And just to top it off he has some proprioceptive sensory issues. This is when their brain doesn't recieve the proper signals from thier joints and muscles. They tend to touch things too hard or too soft, they have trouble walking and balancing well, they have an unusually high pain tolerance(not good), that sort of thing. So that's my kid a mess,lol.

A typical episode with Dominick goes like this. I set him down in his playen and he is ok, then for some reason, not wet, not hungry, not hurt,not tired, he will start throwing himself around the playpen, slamming his head into the sides and the floor, screaming, flailing arms and legs. I go to calm him and nothing works, it just gets worse. Now armed with the info. I have from my research I grab his stuffed animal massager. A bear that has a vibrating massager inside it. I literally pin him down with it. He continues fighting for a bit but slowly begins to calm down. I move the bear up and down his back and legs until he is still and then I take about ten minutes to do his whole body, head to toe. Finally he grabs the bear and stuffs it under his belly and lays down. He stays like that for a few minutes and then sits up to watch Elmo. He now plays quietly for at least an hour. He needed input to his body and the massager provided it and when that need is met he can go on normally.

The OT has given me some great new ideas and ways to reinforce what we are doing already. While she was there Dominick was playing with his bear massager and somehow ended up falling right on his forehead, no hands out, on the wood floor. Man, the sound was awful! I grabbed him and his glasses were all crooked, so I took them off. He got mad at me and took them back ,rubbed his head and turned to go play. No tears, no crying, nothing other than a quick rub of the head. I hat to say it, butI was kind of glad that it happened when she was there, so she could see his indifference to pain. She immeadiately started writting,lol. Today he has a bruise where he hit, it was nasty.

She is calling the PT to have her come and see what's going on physically with his walking. He is kind of leading with his left and the right is slow to come along and at times he slaps his feet so hard. This has been his weaker side throughout his life. The OT says that the I will really like my new case worker at EI so I'm glad. It will be nice if I can keep things moving for him now. Every time the OT seems to start moving forward we have a meeting with the caseworker and everything is backed off because the caseworker sees the problem as no big deal. I did ask if she thought we continued with the therapy if he would get better as he grew or if this is something he will deal with for a lifetime and we will just adapt therapies as he changes. My answer is a little of both. I know that he has come so far already and I am so proud of him so I am confident that he will be ok. He is my little man and that will never change no matter what happens.

So this what we have been doing.  Still teaching and using sign language with great results so far. We have ordered a wonderful set of DVD's(reccomended by his OT) for him called Signing Time for babies. They are designed to appeal to and teach babies under 36 months old and have babies using sign language on the DVD's so they want to watch and immitate. They also have a full series for ages 1-8 if you have older kids who want to learn too. We'll be getting these too, but they are a bit pricey so a little at a time. I hope to get the entire series eventually. If anyone wants info on them I will be adding a link to thier site. I was getting a bit discouraged at first but Dominick now signs to me when he is hungry and when he wants a bottle and when he wants more. It has been great to know what he actually wants when he is fussing sometimes. On top of that he is working really hard on thank you, who could ask for more,lol. I have put together a bunch of stuff to help with his tactile issues. Like when he falls down outside he can't get up because he won't touch the ground, it's sounds funny but it's really sad to watch him panick. I have three bins and I have one full of dried rice, one full of dried beans and one I am going to fill with sand. I have also bought a ton of playdough. He will start to learn to put his hands in each thing to try and desensitize him to the textures. We have special times during the day to give him extra input to his senses. He needs and craves this. Because he has proprioceptive(wires are not sending signals to the brain from muscles, skin,& joints properly) we do jumping,stomping, pushing, and pulling. Because he craves senosry input and will do things like bang his head or hit himself just to get it, we dance to loud music, we jump off the couch into pillows, we spin in circles, and we have brisk rub downs with towels. We are even getting one of the big trampolines with tax money. For the times I know he needs to organize his senses I play different music, he is very fond of the blues and loves Pachelbel's Canon in D major. His sense of rhythm is amazing, he truly feels the music. We are still waiting for the new PT evaluation for his left sided weakness. His social issues are a bit more challenging but we mainly work on getting him to feel comfortable when not at home. He has also started having huge issues with having any straps on him, not good considering the highchair and carseat. I think we are on the right track here, but I know there is so much more I could be doing and that is the hard part. If I only knew more on how to help him.

Eye Surgery In Our Future

Here is the news about his surgery. We went to Virginia Eye Institute in Richmond again this morning for Dom's recheck after patching his one eye for 4 weeks. There has not been any good change in his vision or his crossing and the fact is that if you cover his weaker eye the other eye is still crossing too much still. We have scheduled his surgery for March 1st on both eyes. I am a nervous wreck and will be until it is done and over. The chances of anything happening to his vision or to him are very slim, like 1 in 10,000, but still the thought of him being put to sleep makes me nuts. The biggest risk of the surgery is having to have another surgery down the road to correct any overcompensations or undercompensations the body might make. It is an outpatient surgery so at least we can bring him home afterwards. I will let everyone know what's going on as we get closer. Just one more worry for the time being, but I have great confidence in this doctor and I know it must be done.

I will let everyone know how it goes and what his recovery entails when it's time.

Some News On The Sensory Processing Issues

We have finally talked with the new case worker from Early Intervention. I like her alot so far, but did come away feeling very upset again. As we talked about Dominick and all we have been through she said that we would set up a visit after Dom's surgery. She said she would try and get the physical therapy evaluation set up again and see about a speech evaluation as well. I was really happy with everything she had to say except as we were going over things she asked when he had been seen a developemental pediatrician. I explained to her that we had everything set up almost a year ago to go to UVA Children's Hospital fro a full evaluation with a dev. pediatrician and all therapists, but that my old EI case worker said not to put him through that because they could do all the same things. This was upsetting to the new case worker and she told me that they were in no way qualified to do anything a developementalpediatrician could do or diagnose. I was just so frustrated at that point. All I could think of was that it would take me another three months or so to get him into UVA  and that meant more waiting. I agreedthat I would get him into one as soon as possible.

Just for the heck of it I did yet another search on the internet for anywhere that might have a developemental pediatrician closer to my home. Well up comes a facility that is relatively new thirty minutes from my house. It is called The Pediatric Therapy Center in Fredericksburg,Va.  They are affiliated with Richmond's Children's Hospital and have physician services right there including a developemental pediatrician....YIPPEE! I did a quick search on the doctor to see about her background and it was excellent so I called them right away. To my surprise they were able to get him an appointment on the 9th of March...Can you believe it?? The best part is that any therapy she prescribes for him can be done right on site. They have them all including sensory intergration therapy. If it comes down to me having to pay for services out of my own pocket I will do that somehow. He needs this and I cannot keep waiting for EI to catch up with us or have a break in their case load. I wish with all my heart that this facility turns out to be all they say it is. I am becoming concerned with some of Dominick's behavoirs and he seems to be losing some of his skills especially in his speech and sign language. He isn't saying words that he was saying and he hardly signs anymore. All of this has happened so suddenly. I am trying to figure out what it is that might be causing this, he was doing so good. Well I will let you know how the visit goes after our appointment.

The Eye Surgery

Surgery Day: Well,Dominick had his surgery this morning. They were so good with him. Before the surgery they all came in and talked and played with him so he would know thier faces. The anesthesiologist and his nurse came in and brought one of the masks for him to see and play with(they smell like cherry,lol) and she played with putting it on him and soon he was laughing about it. When it came time they took him and walked down to the surgical suite, he didn't cry.....I waited till they rounded the corner and then lost it. The surgery went well and didn't take long at all. I was sad that we couldn't be there when he woke up, but they said they wanted to do all the yucky stuff (drops,removing IV's) before they brought us in so he could just be comforted. I thought I would just explode between the time we talked with the surgeon and the time we could go to him. When we got to his room, the nurse was holding him and rocking and singing to him. He was really disoriented and mad. They gave him a tylenol supp. and Motrin thru the IV for pain, but he was so upset. The worst part was that he looked at me and cried and when he cries, he cries little bloody tears, it about ripped my heart out. His eyes are really really dialated and they are full of blood, but that is about it. They look so straight already, I can't believe it. Once he is not dialated I will take a picture. His eyes will stay bloody for about two weeks. He slept most of the way home with a few periods of crying but nothing terrible. When he got home he was still disoriented but after sleeping on me for a little while he woke up and saw Anthony and smiled. Then he wanted to eat everything in site,lol. Once he ate he was a whole different baby, much happier. He rubs at his eyes a bit but no real pain problems. He took a nap after a little while,and I fell sound asleep with the monitor in my hand. I was up with Carly last night, still suffering from double ear infections and a sinus infection. I just wish she would eat or drink something. He woke up and I gave him more Motrin, and he was playing with Carly. He is really doing great, now if I can just get used to bloody tears and blood running out of his nose, I'll be ok. We go back in the morning to see the surgeon, so she can go over everything with us and do his follow up. Sorry for the rambly post I am just exhausted. I am going to go pick up something for dinner...no cooking for me tonight. Thanks all for your well wishes, they worked great.

Day Two:Went back for the post op visit this morning. She was very pleased with how straight his eyes were already. And when you put his glasses on they straighten out perfectly so it worked great. We will go back in 6 weeks to see how his vision is. He is still getting his new depth perception so we have to watch him really close. We will watch for any signs of infection and give him Motrin just in case he is still feeling soreness or anything, but all in all the doctor was thrilled with him. I have made a photo album to show his before and after surgery pictures, it is in the sidebar here. Look at how straight those eyes are already.

Day Two Cont: We just got back from the ER with Dom. I was on the computer earlier trying to read posts while he was sleeping and he woke up just screaming. I went to get him and he was on fire. Temp. of 102.5 in the ear. I called the surgeon but of course she was not in, but her nurses told me to go to the ped. Well long story short, ped was double booked already because everyone's kids are sick and there was no way for me to get in, so off to the ER we go. I was so worried it was an infection in his eyes. Dreams of "what if he goes blind came to my head" and I was freaking out. After the usual million hour wait we finally saw the doctor, who found an ear infection. I was never so glad to hear he had an ear infection in my life,lol. They said that because everything is kind of tied together up there, that by messing with his eyes it probably set off an ear infection. We will have to see the ped. in two days to be absolutely sure the antibiotics are doing something, because it could spread into the eyes. The good thing was I was dreading the pharmacy wait with everyone in the United States sick lately, but they gave me a bottle of bubble gum Amoxicillin. I will have to get another one filled but at least I don't have to do it in a hurry. They have him on a strong dosage(around 800mg per day) so hopefully it will knock it out. Meanwhile Carly is doing a bit poorer and is still not eating and barely drinking anything. With all the viruses she has had this makes like three weeks of being sick for her. She has lost about 10 pounds and is really worrying me.

Day Three:Went to the ped. with Dominick and Carly today and it went well. Dom's ear already seems to be responding slightly to the antibiotics, I'm glad I was able to get two doses into him last night and one this morning. Now we just wait him out and watch him close. SHEW!!!! I feel better about him. I am so happy that he looks straight at me now. Carly was seen again and one ear is still full of fluid but not red anymore, but the other is still angry red and looks bad. She is also still all full of stuff in the sinuses, so this ped. ( I don't like the one we had to see last time) said it's time to get tough and put her on Zithromax and a heavy duty combo of cough,antihistamine,decongestant. They have recorded a six pound weight loss over the last two weeks, the other 4 were from the week before and were not recorded(don't ask me why), but he said she eats and drinks by the end of the weekend or we intervine. He is hoping to spare me a hospital stay right now and that the new drugs will get her over this. We have bought any and every food possible, pediasure shakes, and anything that's drinkable,lol. The doctor told her she had to drink no matter what and that she should try and eat, but at least drink three shakes a day. He was very stern with her, but in a very caring way. I think it got through because she has been trying to drink since then, small amounts but better than nothing. She also tried a few pieces of popcorn chicken, but that was about it for now. I'll take it. I've sent Frankie to his friends for the night, Anthony is at his girlfriend's until 10:00 so it is just Carly and Dom for me to deal with. Thanks to everyone who has sent well wishes. Whew, I am just so tired!

The Developmental Pediatrician Visit: A diagnosis of ASD

Today, March 9th was Dominick's evaluation with the dev/beh ped. She was fantastic and very knowledgable. I really liked her alot. She observed Dom and did some activities with him while talking to me. She basically asked specific questions and I answered. The visit was long, but that's ok. For the first time ever I had a doctor explaining the things to me instead of me trying to explain what I am dealing with. She asked questions as if she has been in my house living with Dominick. She knew so many things before I even said anything about them. This made me break down and cry at one point and she told me that she understood, it is good to have someone finally hear you and understand. I really felt confident in her opinions and very comfortable talking to her. When all was said and done she said that she would put a full report together for all Dominick's doctors and for myself. The diagnosis would be Autism Spectrum Disorder and severe sensory processing dysfunction. In short A.S.D. are a group of related brain based disorders that affect a child's behavoir,social,and communication skills. They include 3 of 5 disorders known as pervasive developmental disorders (PDD). These are autistic disorder, Asperger syndrome, and PDD-not otherwise specified(PDD-NOS). They are lifelong conditions with no known cure. However children with ASD can progress developmentally and learn new skills. Some may improve so much that they no longer meet the criteria for ASD, but mild symptoms will persist. The cause is still completely unknown, but it tends to be genetic. A family with one identified child will more than likely have more children with other developmental problems. She said that if I hadn't been doing all the sensory and adaptibility work with him since birth that he would be much more profoundly autistic already, so at least that made me feel good. I always knew something was just not right and I thought I had prepared my self for hearing all of this, but after I left the office I cried all the way home and I cried when I talked to my parents, and then I cried some more. After we talked about Dominick she made some recommendations for Carly, because I had to explain what was going on with her and school. She said that she needs to be evaluated by a nueropsychologist. That will be the only one who will be able to help her at this age and understand how to test her. I have to say guys I'm a little freaked out and feeling quite overwhelmed right now. I just want to gather up all my kids and hug them. I am having a bit of guilt about all this and feel somehow responsible even though she said it is nothing I did or did not do. They still came from my screwed up genes. 

The Early Intervention Meeting After Diagnosis Of ASD

We had our Early Intervention meeting after the dev. ped. diagnosis and my hopes were high that we would finally get Dominick some services to help with everything. Dominick is great from the PT standpoint, so that is a relief. The other issues were not taken seriously and they acted as if the ASD diagnosis was ridiculous. So after being made to feel stupid, they wrote up paperwork saying that they would send the OT out when she was in the area to give advice and comments. I declined this service, it was not acceptable. They said that he was not delayed ENOUGH to get other services and even though I have been asking for months, no further evaluations were needed.

Once EI left I picked up the copy of the report on his development and it just made me more upset.Remember Dominick is 18mo. He is at a 14 month old level for speech, a 15 month level for fine motor skills, and he ranges between 15 months and 18 months for cognitive skills, but more towards 15 because he has no attention span. Excuse me isn't this delayed, what is it that they want to give him services???? I could go on and on about what has been happening with Dominick over the past two months alone, like losing his words that he used to say, but I won't. I will simply say I see signs of him slipping away and noone will help me. I will just have to do this on my own and I will find a way.

This Will Be The Last Post: Online Harassment (never say never)

I would just like to say that Dominick is healthy and happy and having fun. The rest of the family and I are moving forward with his care and we expect great results. Dominick's headshape looks really good and most people have no clue he even had plagiocephaly. I still notice the little bit still there, but I am Mom,lol.  The school system has stepped in to do Dominick's evaluations for me and I will soon know his strengths and weaknesses to better set up a therapy routine for him.  Carly will be going to summer school to help keep her up on everything that she has down in her learning. I also have the name of a good nuero psychologist to take her to for evaluations and her teachers are waiting to see what happens there before we move any further. As always I will do  whatever necessary to make sure my children get the best that they can.

This will be the last post on Dominick's website due to online harassment from an uneducated, uncaring, psycho.  This person has found it necessary to say that because I am dedicated to finding the best for my children that I must have Munchausen's by proxy disorder and that I have a mental problem. Of course this is coming from someone who found the time to join every online group I belong to, email me multiple times, and sit and wait for me to post on any group I belong to(day or night) so they can spew thier delusions minutes after I post. I think it's called stalking, but I am the one with the problem,lol. Anyway it has been my pleasure to share with everyone my journey so far and my hope is still that Dom's site will help others with plagiocephaly and sensory dysfuction. Good Luck and God Bless you all.

It's Been Six Months, Had Time To Think

    Well it's been six months since I decided not to post on here anymore due to the harasment I recieved. This harassment came at a time when my life was being turned upside down by Dominick's new diagnosis and the ongoing problems with the other kids. It really upset me and it hurt me deeply because I know it came from someone who pretended to be a friend and part of my support group, probably one of the worst feelings of betrayal I have felt in my life. It made me feel afraid of using the internet, my most important tool in helping my kids, and it made me second guess my wanting to share our journey to help others, but now I know that would be just what this cruel and heartless person would want. You see people who do this, although they are very insecure and scared think they can feel better about themselves by doing this kind of stuff. They have a need to feel superior to others by using intimidation and put downs, as this will somehow make them feel better about thier own circumstances. If I give up this gives them what they are looking for and I refuse to do that. So even though I do not have much to write about plagiocephaly anymore, there are many people who have followed Dominick's journey through life and ask continually for updates on how he and the other kids are doing. I will post an update on them every so often when I get time or new things come along. Please continue to email me and ask me questions on plagio or anything else you want to, it are these emails that have made me realize not only did this person cause me to lose precious months of research and help, but that it is not fair to all of you searching for answers and help if I stop writting.

So Much Has Happened

So much has happened since I posted in May. First I would like to do a quick plagio update on Dominick. We have continued to see some slight post band rounding as he grows. He has also grown a little more hair finally and that helps too,lol. I still don't see any crew cuts in his future, but to think of what used to be and to see him now is so amazing to me. I often stop and thank God for Cranial Technologies, when I get to thinking about our only alternative would have been surgery. His ears are still off, but at this point all I see when I look at him is my beatiful little boy. It has taken the better part of a year to stop analyzing and inspecting his headshape, but I can honestly say that I rarely do that anymore. So for everyone wondering does it ever stop, yes it does and this too will be a memory we look back on. I still recieve emails from others reading this site and still very much love responding to them and helping in any way I can. It are those emails that keep me doing this.

As you know as of last post I was still battling for services for Dominick for his ASD and sensory issues as well as trying to figure out the problems with the other kids. During the summer we took my six year old daughter to a doctor in Richmond for a full evaluation. After several trips back and forth and many hours of testing we had our answers and things seem to make sense for once. She was given a diagnosis of autistic spectrum disorder(most likely high functioning autism) with ADHD. The positive was that she has an extremely high IQ. The doctor stated that she would need help in school and with the social stuff and laid out everything so that the school system could write out an IEP. She also predicted what might happen without intervention by the school system. We also took my 16 year old for testing and when that was done, we were surprised to find out that he was bipolar and in need of medication. I do believe he is also aspergers or high functioning autistic also, but first we must get the bipolar in check. We are working on finding the right medications to help him, unfortunately this can take some time and experimenting. So now the fight turned to getting services for both Dominick and the six year old, but at least we have some answers and are on the right track.

After going through the school and the state early intervention for Dominick it came to light that I would have to do most everything myself. So while I continued to fight, I began an intensive study of the therapies and education of a young child with autism. I do not have the money to pay for all the things he needs out of my pocket and insurance is not much of a help at all,so I put together many different therapies and use the things we have when I can to do what is necessary. To date we recieve a one hour monthly visit from early intervention where they observe him and check his progress, but that is it. He is due to be released from that this month I believe. This all used to make me so frustrated, but I now know that I can do so much myself and no matter what comes, I will do whatever necessary to see that my little guy is ok.

What I will do now is to post the updates I have been keeping since May on life in our crazy house,lol, so ignore the date on this post. I am also going to be adding in some side bar info. here and some links for help with autistic spectrum disorders and some explanations of high functioning autism and autism signs in very early childhood as these can differ from the usual checklist.

A Bit Of Info. On Autism

Here is some basic info. on autism that will help you understand a bit better the world of autism spectrum disordrs. I'm sorry it is not as neat as usual, but Dominick is not napping well today and I am rushing.

This is brief portion from an article on the OC KIDS website, I think is a great way to explain autism.

Autism is sometimes also referred to as Autistic Spectrum Disorders and Pervasive Developmental Disorders. All are associated with cognitive and neuro-behavioral impairments in socialization, verbal and nonverbal communication, and restricted and repetitive patterns of behaviors.

Autistic spectrum disorders are more common in the pediatric population than cancer, diabetes, spina bifida, and Down syndrome. With improved clinical recognition the most recent prevalence rates are approximately 120 per 10,000 or just over one in every 100 people*. The overall ratio of males to females with autism has traditionally been reported at about 3:1 to 4:1. These numbers vary with IQ.

Symptoms of autism by definition always are present before age 3, but autism is often not diagnosed until 2 to 3 years of age or even later. Individuals with autism often remain undiagnosed or inaccurately diagnosed because many clinicians hesitate to discuss this possibility with parents of young children, even when some symptoms are present. These physicians are often concerned about family distress, the effects of labeling a child, the possibility of being wrong, or the hope that the symptoms will reverse or improve with time. We believe, though that the positive outcomes of an accurate diagnosis far outweigh the negative effects, and families appreciate being informed as early as possible.

There are many advantages of early diagnosis of autism, including earlier educational planning and treatment, provision for family supports and education, reduction of family stress and anguish, and delivery of appropriate medical care to the child.

And this is a great layout of the red flags and problems associated with autism with explanations on how these can vary when looking at a very young child.

What are the Specific Criteria that a Team Uses to Make a Diagnosis of ASD in a Young Child?

The DSM-IV provides the diagnostic criteria for autism, or autistic disorder, and a diagnosis of ASD is made based on complete or partial fulfillment of that criteria. According to the DSM-IV, the following are the criteria for Autistic Disorder.

Criterion A

A total of six (or more) items from sections (1), (2), and (3) with at least two from section (1) and one each from sections (2) and (3):

(1) Qualitative impairment in social interaction, as manifested by at least two of

the following:

a) Marked impairment in the use of multiple, nonverbal behavior, such as eye to eye gaze, facial expression, body postures, and gestures to regulate social interaction.

b) Failure to develop peer relationships appropriate to developmental level.

c) A lack of spontaneous seeking to share enjoyment, interests or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest.)

d) Lack of social or emotional reciprocity.

Explanation

:

In very young children with ASD, impairments in social interaction often take the form of decreased eye contact and/or decreased use of gaze shifting for communication (e.g., looking from a person to an object or activity and back to the person), decreased use of gestures such as pointing, and decreased joint attention (e.g., looking at an object when an adult looks at it). Young children with ASD often have difficulty understanding the concept of taking turns (social reciprocity), even at the level of infant-type "back and forth" games. If they bring an object to an adult, it is usually to have the adult do something (such as open the lid), rather than to show the adult the object for enjoyment. It is difficult to determine a child’s peer relationships if a child is not in a preschool setting or in other ways exposed to peers. Observing the child in a variety of settings or eliciting this information from parents will be important.

(2) Qualitative impairment in communication as manifested by at least one of

the following:

a) Delay in, or total lack of, development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication, such as gesture or mime).

b) In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.

c) Stereotyped and repetitive use of language or idiosyncratic language.

d) Lack of varied, spontaneous make believe play or social and imitative play appropriate to developmental level.

Explanation

:

Frequently young children with ASD do not consistently respond to their name; lack of a consistent response to name is a reliable discriminator between ASD and other developmental delays. In very young children with ASD, impairments in communication usually take the form of significant delays in expressive language that are not accompanied by attempts to compensate with gestures. If young children are vocalizing, they may use an odd jargon or unusual repetition of sounds or words (echolalia). Some young children with ASD learn language in different ways, sometimes repeating "chunks" of words together, such as sentences they memorize from their favorite video. Young children with ASD often have difficulty imitating motor and verbal activities or play routines, and their play activities are usually more mechanical (e.g., building or lining up blocks, pushing cars back and forth) than symbolic.

(3) Restricted repetitive and stereotyped patterns of behavior, interests, and

activities, as manifested by at least one of the following:

a) Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.

b) Apparently inflexible adherence to specific, nonfunctional routines or rituals.

c) Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping, twisting, or complex whole body movements).

d) Persistent preoccupation with parts of objects.

Explanation

:

Very young children with ASD may not develop repetitive mannerisms (e.g., hand flapping) or interest in rituals or routines (e.g., only eating from a green plate) until after age 3, so many young children with ASD may not meet this criteria until they are older. More subtle motor mannerisms, however, have been noted in some young children, such as walking on tiptoes, liking to spin, or a tendency to carry objects around continually. Many young children have difficulty with transitioning from activities or from places. Some children like common objects such as paper, pens, trucks, or trains to an unusual degree.

Criterion B

Delays or abnormal functioning in at least one of the following areas, onset prior to age 36 months:

social interaction, language as used in social communication, and symbolic or imaginative play.

Criterion C

The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

Explanation

:

When a child is referred for an evaluation/assessment for the diagnosis of ASD, individuals who have been providing intervention services prior to age 3 can play a critical role in assisting the multidisciplinary evaluation team. Sometimes community based providers/therapists may be a part of the evaluation team and in other instances they will provide valuable information to the team. This may include the child’s responses to intervention, what tends to work for the child and what intervention has been unsuccessful. Observation of the child, which should occur in more than one setting, can be completed by those who are already involved with the child. Information regarding the child’s developmental levels that are observed on a daily basis will be an important adjunct to standardized tests.

This is some info on high functioning autism in the classroom. Some people especially in Europe it is referred to as Semantic Pragmatic Disorder. There is an argument going on as to weather HFA and SPD are one in the same or two different disorders, but either way this is a great article written by a parent on the SPD web site about how this can affect school. Semantic Pragmatic Disorder in the Classroom Written by Denise Vignola, parent 2002 SPD children are often misunderstood by the adults in their lives. Disordered memory, receptive/expressive difficulty, fine motor delay, task planning problems, and possible auditory and visual processing deficits, combine to create language issues, learning difficulties, confusion, anxiety, and behavioral problems. The childrens' needs can be masked by superficially average classroom performance and functioning. They are a mixture of great strengths and weaknesses, and the strengths can mask the weaknesses so effectively that teachers think there is no need for intervention. At times their weaknesses can also mask giftedness, with educators giving no thought to the needs of a gifted child, since the deficits seem to need the most attention. It is not appropriate to ignore the needs in either case. With proper support, therapy, modification, and a great deal of understanding, these children can overcome many of their difficulties. Without intervention and support, they will slip through the cracks of our educational system, or develop anxiety and behavioral problems leading to improper school placements and little chance to interact successfully with the world around them. SPD children vary a great deal in how they cope with their environment, and how their disorder is expressed. However, all of these children have one thing in common. They need to be supported and taught how to deal with their deficits immediately on discovery. To ignore their needs is to diminish their futures. The following is a listing of common difficulties encountered in the classroom by SPD children. Not all children have every characteristics, and the severity of these will differ for each child. This is not an exhaustive list as prior/lack of support and classroom experiences will have an impact on this child's performance. Learning Difficulties Difficulty using context to determine meaning of multiple meaning words and idioms unless taught to do so Difficulty defining vocabulary words, or word flexibility Does not always ask for help when confused or in need of assistance Difficulty with written expression tasks Difficulty copying from the board Difficulty understanding rapid speech, or lengthy and complex language Can be easily frustrated by work he/she does not understand, and by mistakes made Difficulty staying seated or waiting in lines during transitioning periods Difficulty attending verbal instruction in the presence of background noise i.e. noises from the hallway, children in class working in small groups, the buzz of the lights or computers, etc. Difficulty answering abstract questions Difficulty with brainstorming tasks Difficulty with language in word problems Difficulty with problem solving tasks. Does well when the thinking process is explained May need a short listening/movement break between subjects Needs a quiet place outside of the classroom for a break when he/she becomes overwhelmed with the classroom requirements Many behavior plans will fail because they are typically aimed at motivation instead of targeting a skill-based deficit Needs positive feedback instead of reprimands on behavior Difficulty understanding new abstract concepts unless prior knowledge or interest is tied in to the lesson Difficulty answering reading comprehension questions that are not answered explicitly in the text Difficulty listing main idea and supporting details in a paragraph Difficulty predicting story outcomes, or making up alternative story endings Difficulty retrieving information from memory on demand, such as during games, oral classroom questioning, and tests May have upper body weakness, and become tired from sitting properly in a chair. May slouch, fidget, or get up indicating need for a break Hyper extending and/or weak finger strength as well as motor memory problems can make writing and coloring tasks difficult Difficulty following written and verbal multi-step instructions May have difficulty generalizing or over generalizing new information Difficulty following lessons that are verbally presented with no visual or kinesthetic component Difficulty with planning and organization Social Difficulties Difficulty making and maintaining friendships. May be seen as immature or uninterested to peers Difficulty following the language in groups of children larger than 3 May miss or misinterpret subtle nonverbal signals during conversation or play Needs direct teaching of repair techniques when social situations go wrong Difficulty putting others' needs above his/her own Difficulty knowing how to handle bullying and teasing, and often fails to tell an adult what is happening. Might react aggressively in these cases, and will often be punished when this happens, when instead direct instruction should be provided at that time on what he/she should have done to seek aid. Needs direct instruction and role playing activities in conversational turn taking, topic maintenance, small talk, accessing on-going play groups, and letting others know that they are done playing. Difficulty knowing how to negotiate and compromise Difficulty moderating tone of voice and language when upset or feeling stress. May seem disrespectful or rude, but this is a problem with internal emotional regulation and pragmatic language difficulties May become upset if he/she feels they will not be able to deal with an upcoming social situation. Difficulty telling an adult that they do not feel they will be able to cope. Environmental Difficulties Might have noise sensitivities. May be able to take some loud noises but not others. Main problem is with competing noise signals that are loud, such as occurs in large social gatherings i.e. cafeteria and phys ed. The noise is physically painful. May become distracted by new items in the classroom, often trying to explore when they should be attending a lesson Can become distracted with noises inside and outside of the classroom. May become agitated if the classroom door is open and a loud assembly of students walks by, or if the classroom borders a playground. May feel the need to fix or straighten things that are out of place May be inclined to go to the computer at inappropriate times, when he/she loses the focus of the lesson due to comprehension or auditory processing issues Chair legs squeaking on the floor can be distracting and uncomfortable to hear. You can put tennis balls or felt pads on the bottoms to help with this. Sensory Difficulties Sensory issues vary greatly for SPD children. There is generally always some sensory disorder, whether mild or more noticeable, and you should be aware of this as a possible reason for some avoidance, apprehension, and disruptive behaviors. Tactile defensiveness - unable to tolerate some sensations on their skin Conversely, may need extra sensory input to maintain their ability to focus and sit still Noise sensitivity Proprioceptive issues, dealing with where their body is in space The Effects of Stress It is of the utmost importance to recognize the signs of stress and to take steps to relieve this. Stress creates a snowball effect, and will continue to get worse, possibly leading to disinterest in school and generalized anxiety issues. Seen at it's worst, stress can cause extreme behavioral problems, depression and school phobia. Teachers must be sensitive to the needs of the child, and not hold on to ideas about discipline and how children should behave. SPD children must be taught through positive, direct instruction, and until you teach them language, and modify work, environment and expectations, you cannot put the blame of their deficits on their shoulders and expect to have good results. The following are some of the many possible signs of stress. Reports from parents of sudden distressing behavior at home Sudden appearance or increase of aggression Resisting certain activities or places Throwing self on floor when asked to do something Increased difficulty speaking Increased difficulty transitioning Increased demands to have his/her way Sudden fears of activities previously enjoyed Increased difficulty attending Becoming easily upset at the slightest adversity Becoming agitated at certain learning tasks Panic when asked to just try or do their best Yelling at adults, crying, or refusals to comply Running from the classroom Hiding under chairs, desks, or tables Increased demands for rewards, snacks, computer time, play, etc Sudden refusals to stop doing preferred activities Sudden onset of problems with a peer or social group Start of or increase in tics (verbal, motor, or a combination of both) Start of toileting accidents, especially during the night Difficulty falling/staying asleep - possible nightmares

May through September: It's Been A Long Road

In April I was contacted by the school system to set up a full battery of evaluations for Dominick. They scheduled an occupational therapy evaluation, a developmental, speech/language, and social/economical evals in May and June. I also have a speech evaluation scheduled with the Therapy Center in Fredericksburg in July. I was glad that he would get tested, but as we went through them I was a bit leary of how they performed some of the tests and was disappointed that with the exception of the OT eval. the only info. documented was what was on the checklist, no notes on behavior or responses.

We started with the speech evaluation, which due to his age at the time( 19 months) was inconclusive and a follow up evaluation was requested. Then we had the OT evaluation which confirmed the extensive sensory issues. The report was 5 pages long and it was thought that should he be accepted in the special education program OT would be needed because the sensory issues were interfering with his learning. The next visit was with the special education preschool teacher for developmental testing.It took a little time to get him comfortable enough to interact with the teacher, but eventually he did ok. He was found to be at his level for development( which they had him being 19 months old when he was actually 20 months old), but it took my reassurance to keep him going. They also failed to write down his reaction when a janitor began hammering on something in the hallway( he froze in place and I had to hold him tightly and calm him until it stopped) or when the aide for the classroom came in( he stopped everything and stood there, eyes down and silent). After the aide tried to interact with him, he pulled away and when she rolled a ball at him, he kicked it away and they wrote that down as him being able to kick a ball. It took a bit of time for him to come back around to finish the last of the testing, but they lured him with cookies and it worked. They did write down that it was difficult to get past any of the tests he liked because he could find the materials they put away and would go get them back out, until they hid them and got him interested in something else. I didn't like the way that some tests were done, and few examples would be: when it was time to turn a single page of a book, the book from the test kit was a small paperback book and he could not do it, so they went and got a thick board book opened a couple pages and then when he could push another page over they counted that as task completed. When he was asked to put the foam shapes in the proper frames (like a puzzle) he just stood there, and then the teacher would take the circle and do it a few times and thengive him the circle and he could do it, this didn't seem right to me. I also found out later that this teacher did mention to the OT that" he was very smart, but there was something there", "something odd", but that was not written down either. The final evaluation was the social/economical and that was with the county social worker. It was found that he had two supportive parents and that Dominick should be given all evaluations and any possible help that the school system could provide. A meeting was held to determine his eligibility for the program, but because of his age it could only defer until he turned two years old in September.

After this I again went back to the state Early Intervention program to see if they would help at least until he turned two. I was angry that everyone was agreeing that intervention would be good, but that he didn't quite meet thier criteria for eligibilty. I wanted them to do what they were supposed to be doing. He had been in thier program since he was 5 months old and they had never even scheduled a single evaluation for him on anything I asked them to. Finally they set up a meeting at the end of June, but to be honest I wasn't expecting much. They had a speech therapists there and two "child educators", his caseworker and her supervisor. The speech therapist scored him as having a receptive speech level of 16-18 months and an expressive level of 15-16 months ( He was 21 months at testing). The two educators put him through some basic developmental activities and he did well when in the mood. Then he wanted to leave and we eventually had to sit in front of the door to keep him from leaving. They said he was very smart and that he seemed to be on target developmentally, but again they left out any info. except that which was necessary to complete a checklist on a clipboard. They did not write down that he continually hid behind a large rocking chair, or that when I had to change him and we had to walk down two long corridors and around the corner and back again, he did this all on his tip toes. When I talk about the times when he was disconnected with everyone around him and his environment, they explained it away with him being a shy, quiet child and I was just not used to it. There are many words to describe Dominick, but shy and quiet are certainly not in there. They told me that his speech delay was because I talked too much and that I should put a rubber band on my wrist and snap it to remind me to let him speak. This because I have one hour to get him a speech evaluation and recount the last 21 months of his life, I talk too much?????? I knew at that point that we were getting no where. They seemed overly obsessed with the fact that they might be able to hand him off to the school system in September. They decided that they could send his caseworker out to the house once a month to observe and give advice and tips. That was all they were going to do. I agreed, at least it kept him in the system. I later found out when I reviewed the paperwork that the speech therapist had written down a reccomendation for speech therapy once a month for an hour, but that was never set up. I realized once again that I was pretty much on my own.

Meanwhile I was worrying about Carly and school. She was being sent to summer school to try and help her retain what she learned in kindergarten and her behavior was getting worse at home. This upset me to no end because I had called a meeting with the school to have her tested through the system. They told me she was making some forward progress so they wouldn't even fill the out paperwork, they would just watch her. I set up an appointment with a nuero psychologist in Richmond for a complete psycho educational evaluation. We made several trips back and forth for many hours of testing. I was scared of the results, because I wasn't sure what we were dealing with. I really thought that she had some learning disabilities and possibly dyslexia, but after the tests we got a diagnosis I didn't expect. She was diagnosed with autistic spectrum disorder(most likely high functioning autism) with ADHD and that a learning disorder should be ruled out by the school after some procedures were put in place. A diagnosis of dyslexia was deferred until the school had her going on a IEP(individualized education plan).The great thing was that she not only had normal intelligence, but she was extremely smart with an above avergae IQ. The psychologist wrote out the report and set up all reccomendations for the school system to follow and be able to write her an IEP. She would need specialized education, and help in her social skills areas. The psychologist also wrote out the possible consequences if this did not happen. I was shocked , but really happy to know that we could at least help her now. I contacted the school and they said they would set up a meeting to get her into the programs necessary.

In July I took Dominick for the private speech evaluation in Fredericksburg and it was determined that he should be seen for speech therapy. He was not terribly delayed but there was something going on and he should have help. We put all the paperwork in to insurance but that was a waste of time. They consider it educational so, out of luck, and I couldn't afford the cost of the sessions. This was getting so frustrating. I just wanted to scream. Who was gonna help me?, I guess no one, so I got even busier in my research to learn how to help him .

In August I met with the school system for Carly. I had asked for her to be transferred to a closer school that was the school where she could get the best services so that is where they called the meeting. We met with the spec. education coordinator and the principle of the new school. I gave them all the paperwork from the psychologist with her diagnosis and told them my concerns and what I wanted for Carly. They told me that she couldn't be transferred to the new school because she didn't have a diagnosis, when I said I just handed you her diagnosis, they said that they did not give it to her. So I guess that means it doesn't count????? The school is above capacity with students, they could have just said that it is too over crowded and I would have understood a little bit. When I said that she need services for her autistic spectrum disorder, they said, " Oh, she is way too smart to be autistic". They said that they didn't want to give her a lifelong label of autism, like it was some death sentence or horrible thing. I was also told that the state mandates that they give the child every other label, such as "delayed" before saying they had autism. What the heck is that???? When all was said and done, none of this mattered because they now had to call a new meeting at the school she attended last year. I was just crazy after this meeting and wanted to just give up, but I didn't. I went home and waited for the new meeting to be called.

In August I also had my 16 year old tested to see what was going on with him. He has had sensory,behavior and social issues since he was a toddler. I suspected Aspergers syndrome a form of high functioning autism, but there was something more. The doctor who diagnosed Dominick also suspected Aspergers, but he needed to be tested. After trips to Richmond with him we learned that he was bipolar and needed medication, but there was not enough seen yet to know if there was Aspergers or not. It was more important to get the bipolar under control before it turned into a personality disorder. So we set up with the local psychologist and his doctors to get him on medications. Maybe we would finally get him stable.

I began to institute all the things I had been learning from my research. I put together a therapy program for Dominick by taking pieces of different types of therapies for autism. I combined into a daily routine all his necessary therapies, speech/language, occupational,life skills, and behavioral. Working on trial and error I found the things that worked best and used them. It was hard and sometimes confusing, but I was starting to see glimpses of it all working. This fueled me to get even more proactive in my research of early intervention strategies for autsistic children. I came to terms with alot of things and learned to let go of a lot of things. I can't sit here and tell you that I did all this with a smile on my face, while whistling a happy tune. It was tough and I fell into depressions on and off and the stress of this was really getting to me. I only knew that if these kids were going to have a chance I needed to keep going and that is what got me out of bed every morning.

As we approach the end of August,Carly started school with no special provisions for her education, and I have not yet heard anything on a meeting for Dominick yet. I can only hope that everyone will follow through on what they have said.

Dominick Turns Two

First of all: HAPPY 2ND BIRTHDAY DOMINICK!!!!!

Trying to get the kids on a very strict routine. It seems to be helping some. I get up everyday at 5:00 am and get the kids up at 5:45, I make sure they eat breakfast and do everything to be ready for school. Dom gets up with us, and he eats breakfast and runs around. I take them all to the end of the road at 7:00 to wait for the buses, they come between 7:05 and 7:30. I put on a DVD for Dom to watch and he drinks a bottle while we sit there. Once they are all gone, me and Dom go home. I run through basically the same routine all day long with Dominick and he takes one nap during the day. We go wait for the buses at 3:30 until 4:00 and then I bring them all home again. I make them all get a snack and do homework and then they have free time until dinner. After dinner I start with showers, pajamas and bed. First Dom at 7:30, then Carly at 8:00, Frankie at 9:00 and Anthony at 10:00. Then I get to clean up the days mess and crawl into bed and sleep in between Dom getting up all night. This is my weekday routine, everyday. I keep Dom and Carly pretty much on the same routine on weekends too, but the boys usually get to stay up later.

Dom seems to like the routine as he is slowly becoming more and more obsessive compulsive. When I take him out of bed in the morning he must find his pacifier and the empty bottle he had from the night before, and I must make his crib up. Then we walk down the hallway where he must close every door, and not just pull them to, they must close all the way or he will not go on, then we go put the empty bottle on the counter in the kitchen. Now he can go on with his day, if this is messed up at all he will go back to the step that was missing and scream until it is done. After working on his language skills, I let him clean with me. He loves to vacuum and dust and can even mop a floor pretty good. I try and teach him things while we are doing this stuff. He seems to be much happier doing this then other play and that is what's important to me.

His speech has taken off and he can say just about anything now. He repeats everything he hears,and I mean everything. He repeats things from the movies he watches in the car and commercials on TV if he happens to be paying attention. He repeats things people are talking about in the store or if he hears a conversation between me and the other kids. He can imitate the exact way it is all said too. Yet when it comes to him wanting something or needing something he still barely uses his words. He will grab my hand and lead me to it or he will gesture at it, but barely speaks. He still does not play with toys except when he plays with Carly and her dolls or rides his push around tractor. His favorite things are a set of keys we gave him and a soft chair he has.

His obsessive compulsive things and stims are getting more and more frequent. I have a window in the bedroom that has three panes of glass, you know a bow window and he can stand in it. He gets in there and will spend time just tapping with one finger first on one pane of glass and then the others over and over. If you take something out, like his diaper wipes you must put them back where they were when you are done or he screams. He has even started touching things with one finger that protrude, like Monk does on that tv show. He now wants to eat only with a fork and wants to be at the table. If you convince him to get in his highchair he must buckle the buckles, not you and when he gets out he must buckle them again. He walks on his toes all the time and has begun spinning in circles until he gets dizzy and falls down. He still has no fear and because of that he has hit his head a million times, and then there is the head banging in between and it's beginning to worry me. He took three good hits over the last two days and now if he even taps it he holds his head and moans. If he still does it tomorrow I am taking him to the doctor. I don't know what will ever happen with the school system, but at least I know he is happy right now.

Carly's teacher called me the other day just to introduce herself and let me know that Carly was settling in well. I asked about the work and she said that they were reviewing the kindergarten work so she was doing ok. When I said it sounds like the same as she did in summer school, she said,"Oh, she went to summer school?" It was then that I realized that the school has never even told the teacher anything about Carly. Nice,huh? So when I told the teacher of her diagnosis she was amazed that no one had informed her. I told her to talk with Carly's old teacher and that might help and to call me with any problems. I have the outline of the work and I will tell you right now it is going to be a real challenge for her. The teacher asked if the school system was going to help her and I couldn't give her an answer. The school has never contacted me again since the first meeting at the wrong school two weeks ago.

Anthony has been especially hard to deal with lately while we wait for his appointment at the doctors to get him started on the meds. He has destroyed the door of his bedroom it has about a two foot hole in it. He has been terribly defiant and mean. I certainly hope the medication and therapy will help him, he is such a good kid. I have resigned myself to step up and do what I have to do to set the example, so I do everything in my power to not yell and lose my temper. It is not easy especially when I am so tired, but I am trying hard. I can't ask them to stop throwing tantrums if I lose it once in a while.

A Quick Update

Update on kids 9-12-06

Today we saw Early Intervention for Dominick. The visit went pretty much as normal. The caseworker said he has a vocabulary of 36 words and if he says a few more two words phrases then he will have met all his goals. She said I should think of new goals, but since they have done nothing other than observe him for the last several months I really don't see a need. The school system has not contacted me to do a follow up meeting on his need for special preschool and I don't anticipate any quick action on thier part.

Anthony started his meds on the 9-08-06 and has been taking 75mg of Effexor every night at bed time. I have seen some positive affects so far and I am hopeful that there will be continued improvement. He sleeps better and is more relaxed. His temper seems to be more under control and mornings have been much less stressful. I have seen an increase in his energy level and a few things that make me nervous about the manic side, but nothing that I would call the doctor about yet. We go back in two weeks to see the doctor and see how well the meds are working or if the dosage needs to be increased. I have to say it is nice to see a glimpse of my old son back here and there.

Carly has been doing ok in school, but comes home very aggitated and is very uncontrollable some days. She has problems concentrating on homework and staying still. Reports from the teacher are all good so far and she is doing ok on what has been review from kindergarten work so far. She has made many comments about her teacher being mean this year and that she is very strict, something I have never heard from Carly before....she loves everyone. She has also asked to stay home a few times already. They have begun new work now and she is complaining about it being hard. They are doing sight words like in kindegarten, but now they must learn to spell them without looking too. Her reading has stayed about at the same level, but I am working on her sight words with her and she seems to be memorizing them well. Sounding things out is still very hard for her and I am not sure how to help with that, other than keep pushing her to do it. I tried to send notes to the teacher so she would know how things were going at home and with homework,but the teacher made a simple comment to Carly not meaning anything bad by it, just basically what you would say to any kid ,"no more notes" meaning she didn't want me to have to write anymore and hoped Carly would settle down. Carly took this as she was in trouble and the teacher wanted no more notes about anything. I tried to explain this and thought she understood, but when I tried to write a note about how much difficulty she had with a math sheet, (backward numbers, trouble trying to fill in the blanks) she had a fit and screamed at me "No more notes, the teacher will be mad!" I tried to explain that I was just letting the teacher know she had trouble with her math, but she cried and cried and just kept saying "No more notes". I see big trouble coming, but no one wants to listen.

Circles, Circles,Always Going In Circles

In October the school system called the meeting for Dominick. I brought them printouts of the routine we follow, his sensory diet,and a list of my concerns and issues to date. Because I have made such good progress with him, he does not meet the criteria for special education preschool. I agree that academically he is doing ok, but what about all the other stuff in life that I need help with and will interfere with his learning? They agreed that he needed to be monitored and that he would more than likely be put into the school's head start program at three for half day school. They also said that he would benefit from a two year old program a few hours a week if that could be arranged. I do think the two year old program a few hours a week would be a great idea because right now he is so very dependent on me to get through a day that I do not know what will happen to him when I am not there and he is not home. I am afraid of what will happen if we are forced to just throw him into a program of half days at three. All I can picture is some little kid coming up and getting in his face the way little ones do and Dominick picking up something and knocking the kids teeth out or him having a meltdown and no one being trained in how to handle this. I asked at the end of this meeting about Carly once again, because a meeting has never been called at her school yet.

This is the list of concerns I brought to the meeting for Dominick.

Concerns and Difficulties as of: 10-01-06

Concerns:

1: Dominick is very aggressive when upset. Much more than a typical two year old tantrum. He will throw things, hit, bite, scratch, and scream.

2: Dominick has taken to spinning himself until he falls down. This is causing bruises and bumps and is a safety issue.

3: Dominick will still walk tip toed quite often. We try and keep shoes on him to stop this, but that doesn't always work and he doesn't always allow shoes to be put on.

4: Dominick is having trouble with noises. He covers his ears and cries or has to be held tightly when there is noise that he cannot see. This behavior is a problem with all the ongoing renovations at all the stores in the area.

5: Dominick is not eating very much at all. Between the normal two year old diet changes and the oral sensory issues he barely eats two bites of food unless it is sweets.

6: Dominick has become obsessed with sweets and snacks," nummies" as he calls them. We have had to lock up all cabinets in the kitchen or he will rip everything apart to find them. When told he cannot have them a very extreme tantrum ensues.

7: Keeping a strict routine has helped alot, but when the routine is off he is completely unpredictable and can become aggressive in his behavior. Examples are unwarranted hitting, biting and spitting, beating his head on the floor and throwing things.

8: Dominick will still beat his head when upset or frustrated, although the frequency has dropped with his new routine.

9: Dominick is progressing towards learning more words and can now use a few two word phrases, but when his speech is not prompted he will usually only use one word requests, screaming, gestures or will pull you to what he wants.

10: Dominick is still having difficulty transitioning from one activity to another. When outside and it is time to come in, he must be carried, kicking,screaming, biting, whatever into the house. Once inside he will scream and bang on the door, throw things and pull at you to take him back out. This behavior can last a very long time.

11: Dominick still has trouble playing with his brothers and sisters nicely. He does not realize when he hits them it hurts and does not, unless prompted to, show any reaction to thier pain.

12: Dominick's own pain response is still off and very unpredictable. Because we had to put ice on an injury from beating his head, he now immediately runs to the freezer for ice whenever anything gets bumped.

13: Dominick is like a horse if he does something or you do something once it is a habit. This is a problem because if what needs to be done is not done in the same manner as the first time, he gets very upset. There is no flexibility.

Well I requested another meeting for Carly with the school system through the school principal and it was finally scheduled. I was concerned because I have been seeing increasing behavior problems at home due to stress and some red flags at school that are of concern to me. Her impulse control is becoming very bad and for the first time ever she got in trouble at school because of it. The psychologist had reccomended breaks for her and I am wondering if that might help. The downward pattern she is following is almost exactly as the psychologist laid out if intervention was not put in action.I am concerned with her lack of social skills, she still doesn't quite get it. She is also asking to stay home all the time or goes to the nurse alot to come home. I was also concerned with the amount of backwards writting still occuring and with dyslexia in the family I wanted her tested. Her reading skills are still behind a bit,she still finds it difficult to sound out words, math is hard for her and her work should be so much better considering her IQ level. Of course I have already been told by the school system that "it's not their job to see that she excels, only that she learns something." She does do well with alot of her work and I am so proud of her for that, but there is still something odd going on with her learning process. At the meeting I was told that the backwards writting is ok all the way through second grade and that they were not concerned. On the other issues they decided that she could have a couple of breaks during the day and that she could have a time each week to meet with the guidance counselor for help in the social areas and as a stress reliever. This sounded better than nothing, but no official IEP or 504 was written for her. After the meeting I talked to her about any other issues she was having that might be causing her to not want to go or come home early and I did find out that in the afternoon she is having trouble on the bus. This might explain the going to the nurse in the late afternoon to come home. She told me that in the afternoon the bus is too noisy and smelly and it hurts her head, it is quieter in the morning so she doesn't mind then, but it is terrible in the afternoon. I have started trying to pick her up whenever possible, but some days this is impossible. I also asked again at the end of this meeting if they had found a two year old program for Dominick yet and was told that there were no two year old programs in the county. This is a shame because this is what he needs right now to progress.

Wow! December Already

Well December is here and we are doing ok. Carly is doing ok in school, but is still behind a bit in her reading. I will know in January how far below the benchmark score she is. I have also found out that she has had no breaks, because they have left it up to her to tell them when she needs one. I believe it is best to help the child learn to know when to ask, but shouldn't they have started her out on a pattern or something so she could understand what to do first. She has also had nothing set up for her weekly time for the meetings with the guidance counselor. There are many times when we have difficulties with her being a "literal thinker" as most people on the autistic spectrum. This means like the "no more notes" incident she takes things very literally. I have just recently recieved a phone call from the school counselor to be sure we have enough food in the house. I was confused until they told me they thought they had better make sure after talking with Carly at lunch that day. Apparently she had told the lunch aide that she needed to eat all her lunch because there was no food in her house. This had come from the morning rush conversation of what do you want for breakfast. I had given her a choice of cereal or waffles and she wanted niether, so I said "that's your choices, there is no food in the house", meaning I have to go shopping. I can laugh about it now, but at the time all I could think was,"child services should be on thier way",lol. Honestly so much is going on this month and then winter break is coming,thank goodness, that I am waiting for school to start in January again and then I will go to school again.

Dominick had his meeting with Early Intervention for his annual review to see if he should have services continued. I wrote up a progress report for them and talked about his future. I do believe that I am already doing everything I can as far as academic stuff, speech, etc..., but that we need some help with all the other issues. I told his casewroker about wanting him in a two year old program, but that I was told there were none and she told me that there were programs and that she agreed he should be in one. Virginia is one of a few states that has a law that they must provide education from age 2-21, so if they don't have a program they need to find one or create one. It is no longer necessary for his caseworker to come out every month, but she will continue to monitor us and be his advocate for the transition to school. His services were to be continued under those terms and it was put in writting that the Early Intervention team would be requesting that he be transitioned slowly into a two year old program by March 30th. I can only hope that this happens. We cannot progress toward his goal of going into a regular kindergarten classroom without this final help. I mean I have done everything else by myself is it really too much to ask that they help me now. I put in an overview of how things are going at the end of his progress report with him and the rest of his family.

Dominick's Progress and remaining concerns. December 2006.

Speech/Language:

Using a combination of PECS, ASL,repetition and music Dominick's speech has taken off over the past few months. We spend about 25 hours per week working on expressive and reseptive language. Dominick still has times when he perfers not to talk and during times of change or stress will still revert back to grunting, whining or high pitch squealing. Dominick is able to communicate most of his needs through speech, gesture or showing you what he wants, this is a wonderful change from the constant screaming. However I still have concerns about echolalia like behaviors, such as repeating words or phrases he has heard over and over again to himself. I also have some concerns about his word comprehension, he can say a word but may not understand it and will apply that word to other items or wants. Some of this may be due simply to his age, but given the ASD history this will have to be monitored.

General Behavior:

Dominick still has tantrums that are way beyond the "terrible twos" type tantrums. His behavior can become aggressive and destructive, throwing furniture and other items, hitting, kicking, biting and scratching or grabbing. This in combination with his incredible strength can make for a very dangerous situation. These tantrums can last anywhere from a minute or two up to an hour or more until he is too exhausted to continue. Routine changes and being taken away from an activity can spark one of these episodes as well as negative sensory stimuli. It is becoming harder for myself and even his father to control him when he is like this, I am not sure what we will do if he gets much stronger. To help him learn that this is unacceptable we first try to explain, then try to demonstrate what is proper. If this oes well we praise him lavishly, but when those do not work we use the "time out" method( one minute for every year old), or if necessary we have to use a "holding time out", where we must physically restrain him. Sometimes he is responsive and will sit in a time out and when we go to him he is very sad and remorseful (this is heartbreaking) and then other times he becomes violent when we try to stop the bad behavior and this can lead to a very long tantrum. We have many issues with his intense focus on certain objects or activities. A good example is his obsession with riding on the tractor with his father. The minute his father walks in the door from work or gets up in the morning, Dominick will start asking "tractor", and when told no he becomes upset and eventually goes into a total meltdown, which can consist of any or all of these behaviors; beating the door, screaming, rolling on the floor, beating his head, rocking and mumbling "tractor", throwing objects, grabbing onto someone and pulling them towards the door, and being violent with anyone who tries to intervene. This type of behavior is demostrated about 3-4 times a day on a "good" day, this type of behavior can go on more than 10-15 times on a "bad" day.

Dominick has a need for sameness. When something is changed in the house he will withdraw or obsess over the change. Examples of this are when the microwave and the television broke and had to be replaced. When the microwave broke, we removed it from the kitchen counter and put it out with the trash. Dominick spent the rest of that evening until we were finally able to get him to bed, standing in the kitchen repeating,"microwave broke". The next morning he was taken out of bed and immediately went to the kitchen and began the repeating the same thing over and over. This went on for hours until I could take it no more and took him to Sears to buy a new one and place it back on the counter in the same place. When the television broke, even though it was not taken out of the room , he stood in the living room repeating "TV broke". I was able at times to distract him but because he knew something was different, he would begin to whine and grunt and fuss as if to say something is off. We had to go that night and buy a new one because he was getting so distraught. This behavior makes moving him along in the steps of growing up difficult. Things like removing the nighttime bottle before bed are next to impossible. We work on small, slow changes, but it is very hard on everyone.

Sleeping:

Dominick's sleeping habits have improved slightly.Dominick gets up in the morning with us around 6:00am and is put to bed between 7:30 and 8:00pm. He naps during the day as long as his nap routine is followed. As long as his routine is kept pretty steady he will now lay down and go to sleep most nights. This is a huge improvement. He still wakes three or more times a night, some times he will turn his music on and go back to sleep, but others he must be taken out of bed and a routine is followed for that and then he can be placed back to bed. We have tried every method and every trick for getting him to sleep through the night, but so far nothing has worked. Some nights can mean getting up almost every hour on the hour. I also attribute this to his ASD. This is extremely hard on me as a mom of four when I must be up at 5:30am to get the other three on school buses, not to mention function through a day. The other children and my husband try to help by allowing me to nap, but during the week they are at school all day and my husband does not get home before 6:30pm most nights and works both weekend days usually to keep up with the bills.

Sensory Integration Problems:

Dominick is still having trouble with his sensory dysfunction. Trips to the store are still miserable for him, too many sounds, smells, lights and noises. This can make grocery shopping almost impossible at times. We try to shop very early in the morning when there are less people and the store tends to be quieter, but that is not always an option. Noises is a big problem for him, if something makes a noise that he does not know what it is he becomes very afraid and covers his ears. Loud banging and motor noises are the worse for him. We try to let him see what is making the noise and that can help sometimes.

Dominick still has trouble with some textures, which means we choose clothing very carefully and are sure to let him touch things ( if he will) before we buy them. Sometimes the feel of clothing all together can be too much and he will spend a day in his diaper and a t-shirt or just a diaper.

He requires heavy blankets for sleeping all year round and they must be either flannel feeling or fleece. We can occasionally get away with an extremely soft cotton, but it must be heavy. Lately we are having to layer his blankets to get enough weight, which results in him being soaked in sweat, but he will not sleep any other way. I am looking into a weighted lap pad or shoulder animal for him to see if this will help him when he is aggitated.

Dominick is still requiring many hours of vestibular activity to get through a day. He has a need to "crash and bang", stomp, run, jump, and spin. Not being able to get this input means he cannot concentrate or sit still. He also still walks right over things and people when he is focused on something, not seeming to know that he should look down to see where he is going. During these times I also notice that his gait is usually unsteady and he will walk unbalanced and wobbly.

His pain intolerance has gotten a bit better, but he still has inappropriate responses to pain. He can beat his head on the floor until he is bruised and never make a sound and he can fall down and split his mouth open and never make a sound until he sees us react. Other times he will fall down and nothing will happen and he will act as if he has been hurt. Because we had to put ice on his head when he beat it on thefloor he believes that any "boo boo" needs ice and will go to the freezer and get it if he or anyone else gets hurt. We try to provide the necessary input for all his sensory needs through a sensory diet everyday, this has helped alot, but things can change from day to day with one thing getting better and a new thing showing up.

He has started turning his head and eyes sideways when looking at people and TV sometimes and rolling his eyes back in his head when frustrated. I am not sure what this new thing is, but it is concerning me.

Play:

Dominick is doing a bit better with play. We are seeing some immitation of his siblings with his toys, but this is usually limited to what he has seen them doing and it has to be exactly the same way. Our hopes are that this will blossom into a bit more imaginitive play over time. The most exciting development is his interest in pretend cooking and eating. He learned this from his sister and it is something he enjoys and will occasionally initiate on his own. There are two main ways he plays, one is when he is totally focused on something and you cannot distract him or take him away from it without a huge tantrum and the other is when things will only hold his interest for a few minutes at a time. He also gets upset if someone tries to elaborate or change the way he is playing, this can result in being hit, bit, or having things thrown at you. He still cannot regulate himself enough to get through an entire play session without hurting someone. He just doesn't seem to understand or care if he hurts you and will even laugh at you if you cry or say "ouch". Nothing we do seems to make him fully understand that he hurts you, there is just no sympathy there or something.

Eating:

Dominick's diet is very limited. On most days we are lucky if he eats the equivalent of one meal. He is obsessed with sweets and will tear the kitchen apart to get anything sweet. This has resulted in all food cabinets being locked. He does however drink sevearl cups of milk during the day and I believe this is what keeps his weight up. I am afraid to cut down the milk for fear of weight loss. His appearance is still that of a pot bellied baby, and this actually worries me because with the amount of food he eats he shouldn't have a belly at all. I worry because he has a seperated stomach muscle and an umbilical hernia and do not know if that is what gives him this appearance. Without his shirt on it looks as if his spine is very curved inwards at the lower back. I will ask again about this as well as his milk intake at his next well check with the pediatrician.

Self Stimulating Behavior:

Dominick still displays alot of self stimming. He will spin in circles. He walks on his tippy toes. He will flap his arms around. He does little fidgeting things with his fingers. He will take water or juice or milk in his mouth and let it run out. He spit until he makes a puddle. He smells or licks things that are not meant to be smelled or licked. He will hit himself or bump his head against things repeatedly. We have good days and bad days with these behaviors and in stress situations these will increase. We approach these behaviors with a relaxed attitude. If it is not interfering with anyone or anything then we allow it to continue, but not to the point of when he becomes lost in his own world. I believe that if he needs to do this then it is important to allow it to a point.

Overview:

Overall life with Dominick is a bit easier than when we were uneducated about the autistic spectrum and had no clue what we were dealing with. Everyday of life in our house is modified to accomodate the special needs of Dominick and his sister who is also on the spectrum and his brother who is bipolar. Knowing that we must be flexible and understanding has helped alot. Following strict routines for everyone is a must. Coming to the realization that life will never be "normal" and accepting that has been hard, but necessary. We put in about 25 to 30 hours a week of work just to keep Dominick progressing and maintaining. On top of that we try to keep Dominick engaged with the world for as many hours that he is awake as possible. Dominick is a wonderful, extremely smart little boy who can melt you with a smile. He is doing better as far as getting through a day, but relies heavily on me to help him. We are seeing what seems to be a turn towards more Asperger like or high functioning autism behaviors. His communication skills have improved so much and that has made a huge difference in his quality of life. He has three siblings who are very supportive as well as two parents who will do whatever it takes to see that he becomes the best that he can be. He is amazing and I am so proud of him everday. I only wish that this state and the government would realize that there needs to be programs for the children who don't quite fit those little checklist that say they qualify for help or not. Saying that your child is not "disabled or delayed enough" is like saying "well the fuse on the bomb is lit, but it's a long fuse, let's see if it goes out before we do anything". That said, all of this is extremely hard on me. The stress of having more than one special needs child in the house while recieving no outside help comes at a huge price. This stress has pretty much cost me my marriage, my sanity, and my health, not to mention the financial burden. Try going through one day without hardly any sleep, taking care of four children, a house, doing laundry, grocery shopping,doctor visits and appointments with schools, doing all the necessary therapies, researching, learning new teaching methods for your ASD two year old, and never getting a break. Now try doing that 24/7. Try going out in public knowing that people are staring at you wondering why you can't control your children, because you cannot look at them and see an obvious disability. Try going through a day smiling and responding to people when asked how they are doing, " oh they are doing great", when all you want to do that day is sit down and cry. Try looking into your child's eyes and seeing the dreams you had for thier future disappear behind the blank, emptiness that keeps trying to creep in. Try begging and pleading for the state and government agencies to help like they should and having to swallow the "red tape", garbage they throw at you as to why your child doesn't qualify.Try dealing with the outdated knowledge base that these agencies are using and the ignorance of many of it's employees on the subject of autsim. Try going through everyday knowing that child may never live a "completely normal" life, but with a little help and the right programs could have a chance at getting pretty close, but you can't afford those programs. These are my kids and I will do whatever is humanly possible for them, I took that responsibility the day I concieved them, and I would not change who they are in any way, but someone needs to know that there many families like ours out there and something needs to change.