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.