Home > General > On Your Mark, Get Set….

On Your Mark, Get Set….

Yesterday started the beginning of a very busy, chaotic, unscheduled period for James. If you know anything about people with ASD and the importance of schedules you know I’ll probably have a lot of material to draw on after the next few days. Yesterday was Field Day at school, a.k.a lots of competitive team sports games in Central Park a.k.a lots of 4th grade boys yelling over who made who lose and who is the best in 80 degree heat a.k.a potential for a complete and total meltdown by James.

On top of all of his issues James is also physically disabled – he truly can’t compete with his 2 year old sister, let alone a bunch of 4th grade boys who think that winning the tennis ball on a spoon relay race is the only thing that matters today. To further complicate matters, James doesn’t realize that he is not as good at running with a tennis ball on a spoon as everyone else, so he doesn’t understand why anyone would accuse him of “losing the race” for his team. James also doesn’t understand the game rules and will often be accused of “cheating” or think someone is “trying to steal the ball from him.” All of these issues have come up in several gym classes this year – in fact, gym is one of the most difficult yet favorite days of the week for James. It is as if he thinks it is going to be different every week, that he will be able to keep up with the other kids if they just change sports, or months.

Just like James doesn’t understand that he is not able to keep up with the NDI dance moves that the rest of the 4th grade has learned for their big end of the year dance performance today. Performances, I mean, three of them. Thinking about James making it through the day in one piece sends a thrill of fear through me, especially after watching his mid-year performance in December. The NDI program at PS 163 is really neat, and the performance in December was entertaining and impressive. There was a lot of cheering, loud music, fast dance moves, and “I can’t hear you” action going on, and though many people came up before and afterward to tell me how impressed they were with James being up there, it was heartbreaking to watch him “fake yawn” his way through the entire event. A fake yawn is James’s way of crying but pretending that he isn’t – he does it more and more as he gets more upset and it is killer to watch from afar. As his parent, his advocate, and his cheerleader it was incredibly hard to watch him struggle to keep up with everyone on the stage during the dances, and then watch him struggle to stay composed in front of everyone as they took turns screaming louder and louder for their favorite teacher, dance or just to cheer in general. The worst part was when they called James’s teachers’ names – his class screamed really loud, and James, determined to fit in, screamed really loud too, while sobbing. Ugh.

Afterward, James told me he had a great time and genuinely seemed proud of his performance and for staying up there through the entire event. I on the other hand questioned every decision I ever made to put him in a “typical” environment. Though it hasn’t been a perfect fit and it was a very difficult decision, my husband and I have always fought to have James in a public school CTT class so that he could be around typical peers and learn typical social interaction firsthand. Does James feel like he has to fit in at the expense of his comfort and happiness? Does he want to do be around these kids? Does he know he has a choice other than suffering through what other people enjoy? Or, is it good for him to learn how to fit in and for him to learn how to “deal” in uncomfortable and scary situations, a.k.a real life when mom and dad aren’t around? You have just visited my stream of consciousness during James’s fake yawn sessions.

Friday is a field trip with the 4th grade. Field trips make me nervous on many fronts. Will James remember to go to the bathroom? Will he be okay on the school bus, or worse yet, the subway (We have had some scary incidents with James stepping into the space between the platform and subway)? Will there be any performances or loud noises on the trip? Will he eat anything all day or be too excited and forget? Will anyone hang out with him or will he be all by himself on the trip?

James is very excited about NDI today and about his field trip tomorrow. If I ever dared suggest he sit out field day or NDI or a field trip he would be very upset. James is also excited when we say we’re going to a fair, amusement park, or beach until we get there and he realizes that there are balloons at the fair, fast rides at the amusement park or waves in the water at the beach.

So back to yesterday – field day at Central Park. I didn’t want to show up unless I was needed because often James is fine until he sees me and then he feels more comfortable getting upset – I’m sure many of you have experienced this phenomena with your own children. So I stationed myself at a nearby playground in Central Park with the babies and waited to see if anyone would text me with “Come get James.” Nobody did. When I went to pick him up from school his teachers told me it went really well. James told me on the way home that “it was close” on his tug of war and ring toss, and that he almost made some baskets in basketball. We talked about how winning wasn’t important and he seemed okay. No dramatics, no tears. The end.

So maybe I’m overreacting – maybe it’s not as bad as I think it is, maybe James has just grown out of it. Honestly, I don’t think so – did you read my post about last weekend? I think his teachers were as pleasantly surprised as I was yesterday. I think his awesome para (his aide at school) is a big part of the reason he did so well and she won’t be able to sit on stage with him during NDI. I am still nervous as hell about today, and I have a pit in my stomach when I think about James getting through all three performances with the cheering contests, loud music and fast-paced dancing.

I always say that my biggest goal for James is for him to learn life skills – coping skills and social skills – so that when I’m gone he is able to have relationships with others and deal with real life when I’m not there to shield him from it. Well, these are the beginnings of that goal becoming reality – it’s time to put my money where my mouth is. And what’s the worst that is likely to happen? It will probably be okay, even if there are tears and a bad night or two involved. Probably, like James, I need to learn how to let go and just get through it sometimes.

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  1. Jane
    June 1, 2011 at 10:43 am

    Michaela, Thank you so much for sharing all that with us about James. You are a wonderful, fantastic, loving mother. I am sooo proud of you!! I am sure every mother is tortured over everything their child does, but you have so much more to endure. And…you are doing a great job!! I keep you always in my thoughts and prayers. Anne keeps me posted. Please let me know if there is ever anything I can do! love and prayers, jane

  2. May 26, 2011 at 7:40 pm

    Update: The fake yawn has been retired. It has been replaced by a fake “face wipe and lip bite” as James tries to regain composure, which he did at least 25 times tonight. The most hard to watch award goes to James singing a very emotional song with his class, while crying – every time he would catch my eye he would smile, while crying, and give me a fist of triumph in the air, while crying. He did a fantastic job keeping up with his class to the best of his ability, and despite obvious trauma was very proud of his effort. So am I!

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