12/17/08

I know the quality of the picture isn't so good but I took it while stopped at a stop sign with my camera phone. Tyler got a black eye on Friday as you can see. He was extra overactive on Friday night. When he's like that, he'll just start running back and forth on the floor and the more he runs, the more unstable he becomes and he slipped and fell and hit his face on the windowsill in the kitchen. Thepoor guy had a gash on his cheek bone, his left eye was black and his right eye was yellow by the time he woke up on Saturday morning. This is a self stimulating behavior of which we do typically try to get him to stop doing. We either try to turn it into a stop/go game and work on his signs, or we try to make sure to play other rough housing games with him or if we are busy doing something around the house, we try to give him some really exciting toys to play with instead of running.Sometimes none of those things work so we are working with OT at school to get any more ideas of ways we can reduce his running. The poor guy is so little anyway, imagine the calories he's burning.


Speaking of calories.. Tyler is doing much better at eating at school, yeah! They were so wonderful to work with us on this. We had noticed when emptying Tyler's lunch bag every day that he wasn't eating nearly the amount of food at school as he was at home so we asked them to video an eating session for us so we could watch and give tips, I thinkt hey had the video that day or the never next day, they are so accommodating!! Anyway, we watched the video and send some tips to help get Tyler to eat (THANKS to CARRIE AND THE ESI STUDY where I learned all those things) so anyway they implemented our suggestions and now he's eating all his lunch, woo hoo! He also is beginning to touch more of his food w/o using utensils. I know that sounds strange, most kids go from picking up finger food and then their parents struggle to get those kids to use utensils; we struggle to get Tyler to touch different textures so that's one of his goals to touch his food. Anyway, he's starting to not only pick up his messy food, i.e. pizza yesterday (special dairy free/rice crust pizza) but he was using both hands to pick up different food. This is also a new skill as he typically tries to manipulate objects with one hand at a time but not two hands working simultaneously at two different tasks, yeah Tyler!

So these are the signs that Tyler knows and can use independently to label objects: Milk, lion, bear, hat, phone, all done, open, shut. He recognizes many more signs than this, he just doesn't do them on his own yet. We are going to video him doing each of these signs so that everyone that works with him who isn't completely familiar with signs, can recognize what he's saying. I had a dream he could talk last night, I love those dreams, they feel so Good but I just don't like waking up and realizing that it was just a dream. One day :)

Which brings me to my next point. I'm not sure how to explain this as I know I've tried in the past and unless you are in in our situation or see it on a regular basis, I think it may be impossible to understand but I'll give it another shot. I was speaking with someone yesterday in regards to a Christmas gift for Tyler and explaining some ideas for him and how we could use them as learning tools for Tyler and I realized how strange it must be to be on the other end of that email, not seeing Tyler each day and not knowing a lot about autism.. that person must be wondering, does Tyler ever just get to play with a toy without it being work? Is Tyler ever allowed to just be a kid. I have heard this comment before so I'll do the best I can to explain it. Tyler would not play with toys in a normal (functional) manner unless taught to do so, i.e. he would have chosen to turn over a play vehicle and spin wheels for hours, never even noticing anyone around him. If we had not intervened, he would have chosen to stare at a light on his piano and just keep pushing the same button to get the same light, repeatedly. When in "his own world" Tyler is not capable of learning & he's not capable of social interaction. Why is this a big deal? Tyler would not have learned how to eat normally unless we taught him, his health would be likely critical by this point had we not intervened at 13 mos. And now, if we do not teach him to feed himself independently and to be able to sit long enough to eat enough food for proper nutrition, not only will be have significant health problems on our hand but also, how many capable 5 graders do you see where someone is feeding them their lunch. Tyler has two working arms, hands and a fully functioniong oral system, he should be able to eat himself but just has to be taught. So first things first, Tyler's health is and always has been our #1 concern.

Secondly, we want Tyler to develop normal social and play skills, he will not do this on his own. For example, Tyler was playing with a toy the other day and Ben came over to play with the same toy, since Tyler didn't find the toy to be all that fantastic, he chose to avoid that social interaction and go play with something else. I pointed out to grandma what had just happend and how Tyler will "avoid" social interaction and she said, oh that will come in time. I said, actually it won't. None of that stuff will come naturally to Tyler, he has to be taught. He needs to significantly reinforced to play with other children and that won't happen unless we help set it up. So why is this important? Well we want Tyler to be able to form normal social relationships, not only will this help his self esteem as he gets older but it will also help keep him safe from bullying. Most kids with autism are bullied, the more high functioning and the more friends they have, the less chance they have to be bullied. I posted a story a while back about a child with autism who hung himself at school, their lives are very tough and we want to do everythign we can to help Tyler be socially accepted into the world.

Another reason that everything seems like work for Tyler is that we want him to be able to communicate with the rest of the world. Tyler is almost 3 years old and other than ma-ma and da-da does not speak; compared to Ben who speaks in full sentences. Imagine being Tyler and not being able to express your wants and needs. And even more frustrting is having people try to figure it out and you only know one way to get your point accross, bad behavior. Think about it, if Tyler keeps saying "uh, uh, uh" how many of you will know what he wants, you'll just keep trying to guess, if you even notice he's making a request, and by that time he'll be so frustrated he'll start banging his head into the flooor, biting his brother, or pinching your or any other number of very inappropriate behaviors. Those behaviors get quick results and when you have no other means of communication, this seems to have the best results for childrenw ith autism. It is our job to help Tyler find a more appropriate means of communication. In order to teach this, we need to have highly motivating/reinforcing items that Tyler wants so that he has a "need" to express himself for those objects. For example, Tyler lvoes his rice milk so when he wants his rice milk, he has to sign in order to get it. I won't get into the logistics of how to teach it but you get the point. Without proper motiviation to request objects of desire, he will not learn to speak.

So in essence, we can't just let Tyler go about his business, he will never talk, eat, or play with peers without us intervening. Life 30 years ago for the autism community was very different, many of those kids are now adults in institutions who are completly impaired and can cause great physical harm to themselves and otehrs. Tyler biting or hitting now, all 26 lbs of him is not such a big deal, Tyler at 14 years old when he may be bigger than me, that's a huge deal. I recently read the story of on mother who was struggling with the idea of institutionalizing her teenager because of the danger he's posting to his siblings and her. Even teh school was worried about her health and those kids are often locked into seclusion at school for the safety of everyone. if we do not intervene now, aggressively, this could be Tyler. That is just not acceptable to me. So as crazy as it seems to you all who do not live it day to day, most every thign that we do with Tyler, will in some way be a learning opportunity for him. In my mind, there is no other course.

In fact, god willing that we soon have better autism insurance, I plan to add more therapy into Tyler's life. He gets 25 hours at school and then what we do at home but really he should have closer to 35 hours of ABA therpy and I also want to add in more speech in addition to what we do at home. He's starting to give up his afternoon nap which will allow for more therapy time. Many adults with aspergers (high functioning autism) speak in seminars accross the country talking about their battle with autism as children, many of htem could not speak and remember really realy struggling to get words out and really trying and being frustrating because they so badly wanted to talk and couldn't. I hear those stories and I think, my poor boy, he's stuck in that world, it's my job to get him out. According to these adults, it's not his choice, he wants out, he watns to talk, he wants to play with his brother, he watns those things and just needs help. When you see kids who had severe autism as young toddlers and you see them now, playing and laughing and having fun advovating for autism insurance and all the treatments, you know it's the right thing. His path is not pre-determined, we can alter his path, so please support the journey, even if you don't understand it fully. There is nothing more important to me than the health and happiness of those boys, nothing.