Max has a special teddy bear that he has had since before he was born. I got it as a present from my sister in law’s mom at my baby shower. It was one of many stuffed animals that graced max’s shelf, a blue Gund teddy. From early on he was attached to the white diaper burp cloths we used, he always carried one around and would gnaw on it as he was going to sleep. We had them everywhere. We called them precious because he would gather it in his hands and shove it in our face and it reminded me so much of golum from the lord of the rings. My preciousssssssssssssss. We eventually took them away around 2 because he would stuff it in his mouth and fall asleep with it like that and they were always soggy and disgusting. Looking back I am sure this was a sensory thing he did to go to sleep, much like the body sock he uses now. Something about biting down on the cloth gave him something. The teddy became his replacement precious. I don’t remember the moment when he chose her, but it happened and other than the relationship max has with his family, the teddy bear is the most important. As I type that I am laughing because sometimes I really think she is the most important one. When his brother was born and was in the nicu one of his pod mates was named Macy and he heard us talking about her. Macy became the bears name just as silently as she was selected to be his confidant. The third child in my life was born.
This bear wears clothes. I had to get her a christmas present because max was horrified that santa would forget her. She wears clothes primarily to keep her clean longer but max’s clothing obsessions have transferred to her. She gets changes several times a day and at night he has been sent to bed in tears because he isn’t allowed to repeatedly dress her until he falls asleep. When she has to take a “special bath” in the washing machine you can almost see the waves of anxiety coming off of him till she is back in his hands. She used to travel everywhere we went but now stays at home because he would use her to zone out in social situations with his peers. Macy has touched our life in so many ways I can’t even count them. My best friends daughter has a teddy now named Lacy and they get their bears together when it’s just the two of them, they turn into parents and the teddies have playmates. These are always the most successful ones for max because it is the play he has engaged in most of his short life and Leah knows how to draw just a little more from him. It turns into them playing mommy and daddy, him following her around with the babies in a shopping cart calling her honey.
Macy gets beat up, put in time out, kissed, loved, cuddled, put in the swing, yelled at in frustration…..the list of emotions max goes through with her is vast. She is his baby, his child and his one great love. Since he was able to form sentences I have always know how he feels and what he is thinking because he uses her to tell me. He even nurses her like I nursed his brother. It’s a gift that I appreciate even though I sometimes fantasize about setting her on fire or running her over with my car. He uses her to talk out his feelings, sometimes with me and sometimes just alone. Most nap time is spent with him whispering to her. What he tells her I don’t know, but he is at least saying it out loud. Max will tell me Macy is feeling like she wants to hit someone. Translation: I am really pissed and I don’t know what to do. Macy is feeling sad. Translation: something is really bothering max.
Like all parents I talk and I feel like no one hears a thing I say sometimes. Often, actually. I am sure me saying no is really annoying, but I am just trying to keep everyone’s bones in one piece and prevent the bloody nose that’s always lurking. SO when I have something to tell max and I want his attention I tell him in the car because he is strapped in and he can’t get away from him. A week ago I was driving and I took deep breath and this is what I said.
“Max, do you know what autism is? Some people have it and all it means is that their brains work differently. It means that they can see things that other people can’t see, or hear things they can’t hear. Its sort of like a secret power. Like how you hear noise louder than people and sometimes when we go out to eat that’s hard for your ears. Or how you can find fans everywhere. I don’t see fans like you and I wouldn’t notice them if you didn’t tell me they were there. So you have autism and that’s what that means, just that your brain works differently. Not better, not worse. Just different.”
Crickets from the back seat. No response. I asked if he heard me and he said yes.
Fast forward to this morning. Sitting at the breakfast table he starts talking to Macy.
“Macy you have autism. It means your brain works different. Not better, just different from other bears.”
Apparently someone is listening. He was talking it out with her and was fine. I know some parents choose to not talk about it with their kids but that’s not my style with anything across the board so this was no different to me. Anything uncomfortable I just say it out loud and then it’s not uncomfortable anymore. It may be uncomfortable for other people but that’s fine with me. The truth is the truth and nothing that needs to be hidden. It is what it is. It just is.
Autism Squared 