Today I am writing this post especially for all of the people out there with smaller children who have autism. It is unbelievable to me (and such a cliche) to say I don't know where the time has gone. Daniel is 15 and finishing his freshman year of high school. It seems like yesterday that he was in first grade and struggling to just stay in a classroom. He was like a little Tasmanian devil going through the hallways, half the time crying or screaming and unable to say what was so upsetting. He'd have to go to a room with his para just to calm down and be in a safe place for himself. If you took the wrong route to school he'd cry for an hour, frustrated that his day was "wrong". He was toilet trained but I'd hold my breath daily hoping there weren't any issues that happened with that at school. I was so frustrated trying to convince staff of the potential in Daniel, not to just see the screaming, frustrated little boy. Hoping to keep him in the classroom as much as possible so that he could learn from his peers.
Now he is wrapping up his first year of high school. My 5'10" tall self has to look up at my baby and he has to lean down for me to kiss him on the cheek. He is a happy happy boy. He loves to go to school and can't wait to see all of his "friends". He navigates the insane hallways of the high school, moving through the wall of teens on the way to his next class. He is finishing his Algebra 1/2 class with an A and looking to Algebra 3/4 next year. He is finishing his 5th year of band. People laughed in 4th grade when I said he wanted to be in band. He plays the baritone.
Changing routines is still not easy. It takes consistency and diligence. But once he adapts a new routine with the improvement in it, he has it forever, until you try to change it again. Last summer I worked most of the summer to get him to make his own lunch. He, of course, eats the same thing every day. Spreading the peanut butter on the bread was difficult for him, so when I say it took all summer of me holding him hand over hand (remember from OT?) showing him the angle of the butter knife, then him doing it on his own. Then doing the same while cutting it diagonally (of course) in half. Now he makes his lunch every day that he is home, on the weekends or day off from school.
We are beginning the process of adult transition and filling out 10 pages of questions asking what Daniel can and cannot do, this is my simplification of the process. It's a painful process for parents and one I did through Community Mental Health last year while applying for respite money for camp (which I didn't qualify for due to salary, not due to Daniel's lack of disability. He more than qualified, the family did not). It is very hard not to focus on how far behind he still is. But I try. So I focused on something else. One of the questions was about making meals. I happily had a "partial" with the lunch. Todd and I chuckled about the question if he can "prepare 3 simple meals" because he doesn't eat 3 whole different dinners. But it did make me think that I could teach him to cook a hamburger. His staple main dish. This is of course the point of the process. To figure out what you could work on to help him toward independence. But as a parent it doesn't always feel that way.
Last night I finished the sloppy joes for the rest of us (it just sounded GOOD) and pulled out two hamburger patties from the refrigerator. I called downstairs to Daniel and asked him if he'd like to cook his own burger. He said "YES!". I'll just repeat that. He said yes. So we went through the process with me talking and him doing. He clumsily flipped them with his spatula while talking about the comparisons to Spongebob and HIS spatula. We made his "salad" which consists of lettuce in a salad bowl. I steamed some broccoli, he got out his lemon yogurt. I cut up a pear. (See we have made big progress with healthy sides!) He flipped and checked the burger while commenting that he really "needed a chef's hat and apron". I smiled and told him that was a great idea. I'm beginning to see him as an adult. It's always hard to let your children grow and become adults. It is REALLY hard when they have a disability.
Reading has been both easy and difficult. Easy because as far as I remember he could always read. He'd read signs as a toddler while driving in our car. He picked up Dr Seuss books and read along. He was three and reading 60 page Curious George books. It was difficult because he wouldn't move forward. Testing his comprehension and debating "what he understands" is a night mare and a constant fight. One test shows 2nd grade comprehension, one shows 4th then another day 6th will pop up. No one knows. So we insist the school just keeps exposing him. Adults with autism report they understood much more than they output back. At school he would read but at home he'd stick to the same books he read 12 years ago. We periodically would try to push him beyond it to no avail. Then a few weeks ago, after he finished readying "To Kill a Mockingbird" with his peers in English. (no he didn't understand it, but he read it and apparently answered some questions in class that shocked everyone) So I decided that was it. I told him, "in our house everyone reads for fun before they go to sleep at night." "I do, dad does, and Zachary does and by gosh so will you." I told him he would read a chapter ever night out of a CHAPTER book.Not his old books. You know what he said? He said, "O.K." Like why hadn't I asked before, of course he will! He does this. You can try something with a fight 10,000 times then at 10,001 he says "o.k." like it is the simplest thing in the world. That, my friends, is why you can't stop. Don't get me wrong. We all get tired. I can't push every day of our lives. We would all be miserable. But when I get the strength, when I feel like it's "time" again. I push again. Sometimes it doesn't work. Then one day, it does. And when it does. It is not only magical, but shocking.
Parenting a child with a disability is at the same time the most frustrating thing in the world and the most rewarding. Jumps in ability are so much more obvious that with our neuro typical kids. They are under such a microscope, and so are the parents. I had to have an ongoing conversation with the school yesterday about how I answered some of those questions on the transition form. It is very frustrating to have people question something you answered that your child has been doing forever independently, but the process makes it happen. She wasn't saying I was lying, but she had a different answer based on something Daniel told her. It makes me crazy. I spent a lot of my morning going back and forth with her about it. Only to have Daniel make his own dinner, then tell me he wanted to go to his IEP meeting today, then read me a chapter out of his book (it's Disney Fairies. But it's a chapter book!) and while reading he laughed and talked to me about it and I sat in his bed smiling as he read it to me. And it was awesome. So for the parents with smaller children with disabilities. I know it doesn't seem like you will ever get here. Those who didn't know Daniel when he was little think he was always like he is now. He was not. It's hard. It's also the most rewarding thing you will ever do.
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