Autism Watch: 2007

Posts Tagged ‘occupational therapy

The last few days, we’re noticing more and more situations where ds is unwilling to listen to the reason, any reason. We try to tell him something brief and clear, such as “You need to get into the bath now” (after his 10-minute warning) and he blows up, yelling, spinning into a full-blown meltdown, ending with him quietly sobbing, telling us he only wanted a minor deviation in the plan but he didn’t communicate it so therefore, we didn’t understand. In fact, looking back, this is pretty much what has happened each time he’s melted down this past week; a minor issue explodes and we’re trying to figure out what pushed him over the edge and what he was trying to tell us that we missed. We can be face-to-face, him raising his voice, us trying to keep ours low, and struggling to communicate.

I’ve had a lot of people tell me “You’re so fortunate your son speaks.” Yes, they’re right. We are. And we are grateful. But, speaking doesn’t mean communicating. An autism diagnosis means that there’s some problem with communication, now or in the past. Some people who see children with autism that are verbal fail to grasp that autistic kids can talk, as in “where’s the communication issue?” Not only do they not see how far the child has come, but they don’t get the difference between speech and communication. They are two entirely different things. So while a child may have language, it doesn’t mean they use it right, or that they comprehend the meanings. Then throw in body language, and communication can even get much more difficult.

Last night, cuddling with my sweetie after the last meltdown of the day, I was really sad for him. He felt that he’d been telling us so clearly what he wanted, and not only was he trying to get out of doing what we wanted, but we really didn’t get his meaning…at all. And because he was so busy trying to get us to understand his meaning, he was getting more upset as time went on and making less sense. But, in his mind, he made sense. What exactly do you do then?

Since school is starting soon, and this problem seems to be getting worse (because he’s getting older? getting bored at the end of summer? who knows?) I want to make it a priority to work on. I’d really love some recommendations of good books to address the communication gap we’re experiencing. Or a suggestion of who to speak with: social skills therapist? speech therapist? psychologist? I don’t think he needs help, but rather we need to know how to work with him to help him express himself sufficiently, without the anger that builds up, then the sadness that just breaks our hearts.

And maybe it will also help tackle the meanness that comes along with it. I’m so glad he can say “I love you, Mama,” but the “You’re a jerk, Mom” hurts.

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Most autistic children end up with some kind of occupational therapy as they’re growing up, be it in school or via a private provider. One big thing about O.T. is that the parents are also taught what works and doesn’t work in order to keep their child calm(er) and to maintain a sensory diet. Each kid’s ‘diet’ is unique, but most involve some sort of physical movement. Our occupational therapist suggested we take ds to Disneyland frequently — ds had/has rotary nystagmus (abnormal reaction to spinning/movement) and he needs a lot of physical input to keep his system level, and the heavy-duty rides at Disneyland (Space Mountain, Tower of Terror, Matterhorn, etc.) give him a lot of input. She also suggested a class in some sport (gymnastics, karate, etc.) that would work on physical input while helping with social skills and learning how to behave in a classroom environment. We knew a team sport wouldn’t work; ds has low muscle tone (functional hypotonia) so we weren’t sure what he would contribute to a team, but even more importantly, we knew he’d have tantrums or meltdowns if he was teased, bumped/roughed up, didn’t get to play the part he wanted or as often as he wanted, and a multitude of other things. So, we went for karate. Ds likes the Teenage Mutant Ninja Turtles and he thought their skills were cool. We knew of a couple of good studios, but we also didn’t want to sink a huge amount of money into a uniform and classes in a formal studio setting without testing his interest level. We enrolled him in a less formal (e.g. less costly) course and were pleased to see that he took the rules very seriously: be quiet, don’t disrupt the class, and try the moves. The sensei is a wonderful teacher, and pretty strict with those who disrupt. On week two, ds was trying a side-kick, while laying on the ground, and saw a ponytail from a girl next to him. He loves soft things, so he was running his toes through her ponytail. Yes, we wanted him to stop but the sensei is in charge, and sure enough, he saw it. We feared a major meltdown, but ds took the instruction and never once did anything even the slightest bit questionable again. But that doesn’t mean he always paid attention. There were times where we saw the sarcasm/funny/sarcasm talk of the sensei go right over his head, and he’d pay more attention to his belt, his toes, his belly button, you name it, than the sensei’s instruction. This last week, we knew after two or three minutes that it was going to be a long class. Ds had no focus whatsoever, spinning, playing with his hands, and tilting his head the entire time. The sensei must have picked up on it, and decided it was better to let it go, but it never improved. He barely tried what they were instructed to do, and he was always backwards. His eyes were so vacant, and he seemed so out of it, for lack of a better word. If only I’d had a videocamera, it would have been an enlightening movie. I am taking one next time, as that behavior was scary and it displayed a lot of things we really need help with.

On that same note, Christmas shopping. Autistic child. Do you see where I’m going with this? Today I took my son to Target, just for an hour or less, to buy some gifts for his siblings and his dad. I was concerned with how he’d do in such a busy place, but figured with Target, we could find something for everyone on our list. Off we went. First we almost got hit by another car in the parking lot, someone in a hurry, not paying attention, pulling out into oncoming traffic. Then we get into the store, only to find there are no carts. Shopping with ds requires a cart. We wait until someone leaves one, and ds decides that there were cute things in the dollar aisle for everyone, including a book, “Ducky’s Rainbow Delight,” for my 19 yo daughter. After I talked him out of that, the Icee requests started. For the next 45 minutes, “Can I get an Icee? Why can’t I get an Icee? Why is the Icee line so long? Can I get an Icee now? When can I get my Icee? Is the Icee line shorter yet? Why can’t I shop with my Icee? How long is the Icee line now? Is the Icee line shorter yet? Can I get my Icee NOW?” We’d head to one section, look for a minute, and get one or three Icee questions. Section after section, question after question. We finally chose the gifts (easier if you finally say “If you want that Icee, choose. Now.”) and got things I think everyone will really like, and dd headed for the Icee line while ds and I went through the long checkout line. We finished simultaneously, and then the “What kind of Icee should I get? What flavor is green? Why is that one always broken?” questions started. Solve one question, another just pops up. But, I don’t think I’ll need to go back into a store until the day after Christmas, when we just have to go and see what Christmas decorations we can buy at half-price. Maybe.

So other than Christmas shopping, what else changes during the holidays when your child (or your grandchild, niece, nephew, sibling, etc.) is autistic? I’ve got a list of things, but that’s for another blog. I also want to share our story about removing all the toxins from our home in an effort to have a more green, healthier home for our children. If you’ve got children, it’s something you need to consider, even if on a small scale, as every little bit helps. (Mercury isn’t the only thing that doesn’t belong in your home or child.)

The next couple of days are busy. We leave in 30 minutes for a party, then after church tomorrow, another party, so I may not get back on my blog until after Christmas. In case, I want to take some time now to wish everyone a very merry Christmas and a joyous celebration with loved ones.


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