Tell Me What it is

Alternative titles for this post: Pillow Talk, What is Autism?
Pillow Talk is somewhat appropriate but that is really meant for two people who are intimate in the sexual sense not intimate in the talking with your child so I had to throw that one out. What is autism, eh, didn’t love it.
At night I typically “put the boys to bed”. Sometimes this means I kiss them goodnight and sort of tuck them in and other times I spend time with them together or separately. There can be reading involved or talking or just cuddling. When I have something important or significant that I want to communicate to Bryan I often get under the covers with him and we both have our heads on the pillows facing each other. I can then say to him, Bryan, “I have something I want to tell you and I want you to listen to me.” If he can be serious then I will talk. If he starts with the crazy giggles I wait for another night. The night after his Bar Mitzvah I was able to tell him how proud I was of him and how well he had done. I told him, “Bryan you were wonderful at your Bar Mitzvah, you were so happy and Daddy and I were so proud of you”. Other times I have had to tell him some tough things. After he was lost at camp and he was home with us I was very shaken up and he knew it. I wanted to make sure he knew he did nothing wrong. It may seem obvious to a typical child, but I know Bryan gets worried. I told him many times that he did nothing wrong but I was frightened and betrayed by the camp but I wanted him to know that that I loved him so much that even though I knew he was okay I was so sad because I was worried about what could have happened. These were difficult concepts to get across to him but by talking to him at this time of night, calmly, when he was vulnerable and open, he could take his time and take it in.
Jason and I have always had our little talks at bedtime. Jason at times will say “Mom, can I talk to you?” and that’s how I know something meaningful is coming. Often times it can be something comical or something “priceless”. We have always been very open with both boys about Bryan’s autism. That is how both Earl and I are. What you see is what you get. It would never occur to either of us not to talk about it, not to share it with our kids and others. We have also felt for Jason he must be educated and given the tools, the language, to learn how to deal with his brother’s disability so that when people ask him or when kids tease Bryan or ask about Bryan, he will have the appropriate response. When Jason was about 3 or 4 we started reading books to him about siblings with autism. He had friends asking him, even at that age, “why does your brother pinch you? why does he keep repeating stuff? why does he talk like that?” So we tried our best to explain it to him and read books at a 4 year old level.
As time went on Jason has asked many more questions but we are very proud of how much he loves Bryan and how much he is able to explain that his brother “just thinks a little bit differently”. They are best friends and do a lot of natural sibling things like fight over toys/games, play together, annoy each other. Jason is lucky that Bryan has autism because Bryan is so big if he was a typical kid he would probably beat the crap out of him. A little pinching every now and then is not too bad. Jason can be sort of funny about it too. At the first visit to our current pediatric dentist the nurse called for the boys and Jason stopped the nurse. He said “I need to tell you, my brother is a little crazy.” Ok. She looked at me and we both chuckled. Of course they knew Bryan had autism but at that point when Jason was very young he didn’t know too well how to express it. Now of course he is a doctor so he could tell you more than you would need to know!
On Sunday night Jason asked me what I call the “ultimate question”. This is the question every parent of a kid with a disability asks themselves and then feels like the worst piece of shit on the planet ten seconds later. He said “Mom, what do you think Bryan would be like if he didn’t have autism?”. It is as if someone pressed a button on me and instant waterworks. Jason felt horrible that he made me cry. I explained that he shouldn’t feel bad that he made me cry but that question is so hard because it’s like saying what would Bryan be like if Bryan wasn’t Bryan? Of course we have all thought it. Watching my perfectly handsome boy sleeping have I not thought a hundred times, what if he woke up one day and was just typical? Who would he be? But the guilt associated with those feelings is monumental. I told Jason we won’t know and just have to accept Bryan for who he is. Ironically I was half expecting the question because Jason had spent the weekend in NY with a bunch of our friends with typical kids. Sometimes being with a whole group of typical families can do that. But Jason is no longer a 4 year old and his questions are deeper, more mature. He said, “Mom, tell me what autism is?” So I said, “I think it’s like this” and tried to explain and he interrupted me-“No Mom, not what you think it’s like, tell me what it is”. I took a deep breath and told him let me explain. Autism is a brain disorder. Somewhere in Bryan’s brain something is not working right. Most of the things in his brain are working right but one thing or a few things aren’t. So we are going to have to just be happy that most parts work right. He seemed to accept this but I could tell from his expression he wasn’t sure how hard to push. Like is my mommy stable enough to ask more questions? But Jason being Jason who is incredibly sweet and kind did not push any more. He said “Mommy, will you snuggle me?” So we did.


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