Finding Ourselves on the Autism Spectrum

Try, try again

Busy weekend. Alvin went to a movie and sleepover birthday party at one friend’s house and now has another friend over to play video games after seeing a different movie with him. Theodore went to a friend’s laser tag birthday party. He was supposed to have a second party to attend after that, but the second friend isn’t feeling well today, so they had to reschedule.

Simon is off without us at an all-day robotics event. He left the house at 6:15AM and won’t be back until after 6:00 this evening. He went on his own with his robotics team, a cell phone, and some cash for lunch. For most kids, it’s pretty carefree day of fun. We’re just happy Simon sounded OK when we last spoke to him on the phone. This is actually the second day of a two-day event, and the first day wasn’t exactly smooth sailing.

Our boy has come such a long way. The idea of him being able to attend any function at all on his own is a relatively recent development. He has a parapro with him all day at school, and my husband and I have generally been with him everywhere else. Occasionally he can be at a friend’s house when the parents know him pretty well, but we still make sure to be on standby and listening for the phone. His dad still takes off work every year to attend various scouting functions and goes with the boys to summer camp for a whole week.

In seventh grade Simon finally found a club where he was comfortable. It was a strategy game club, and that year it was being run by a friend of ours who knows him very well. Simon loves strategy games and is annoyingly good at them, so he really enjoyed the activity. Plus they had snacks. Come to think of it, pretty much every activity I’ve been able to get him to attend without having to twist his arm has provided him with food on a regular basis. Whatever works. 🙂

This year Simon started high school, and he’s tried quite a few different activities on his own. He’s had issues with at least half of them, but he’s also found a few keepers. One is the game club, which not only offers strategy games, but now Simon finally has people with whom he can play Yugioh without having to enter an official tournament. And he loves GO club. GO is an ancient game involving little black and white stones placed on a board to try to gain and take over territory, and Simon is developing a reputation for his playing ability. Hubby is annoyingly good at most games, too, but he can’t beat Simon at GO, and it pisses him off.

Simon also joined the school robotics team. This is much more of a time commitment, plus it involved some financial investment. Simon has had some problems with frustration over tasks in which he is less interested (he mostly likes programming), dealing with people who don’t seem to know what they are doing some of the time, and – since the build season started – sensory overload from all of the noise. Though he’s been attending fewer of the meetings, he’s hung with it, and he decided to go to two of the team’s regional competitions, the first of which started yesterday. He got to take the day off of school, which was a plus. He still has to do all the homework. And he still had to get up at 5:00am yesterday and today to ride the bus an hour away.

We weren’t sure Simon would be allowed on the bus yesterday, because he hadn’t attended the last meeting, which we found out later was supposed to be mandatory, and because he hadn’t been there to receive his team shirt. But they gave him his shirt and let him on, and we let him go. There aren’t any parapros for optional team trips, BTW. Hubby said he’d be available to go retrieve the boy if needed, and I made sure Simon had a cell phone to call me. We knew the noise level would probably be a sensory nightmare, but Simon’s tolerance has increased over the years, and we hoped the promise of food and hours of mechanical competition would be enough to compensate. It wasn’t. At least it wasn’t yesterday.

The teams took a break for lunch around 1:00pm, and I got a call from Simon saying he was feeling like he’d had enough. The place was an hour away, so I needed for him to hang on for a bit. I did my best to try to find out what was happening and how I might be able to help while I also contacted his dad, who had really been hoping to not get this call. It was hard to hear while trying to have a phone conversation with Simon through all the background noise, so we started texting. Over the course of the next hour I got messages from him saying he was exhausted, he couldn’t concentrate, he couldn’t find the food, and he couldn’t think clearly. At least he could still text. In between bouts of kicking myself for letting him go in the first place, I sent back messages suggesting he find some water, asking if he could see anyone he knew, and finally just asking where he was so his dad would be able to find him.

Turns out Simon didn’t do badly at all. Besides having the sense to call and ask for help, he stayed with his group and did his best to remain calm until help arrived. He also lost the money we sent with him and his new team T-shirt, but at least he kept the cell phone. 🙂 His dad and I decided the best plan would be to try to help Simon find food there and experience some recovery before talking about leaving. Hubby helped Simon to get food (which was on very large tables right out in the open that Simon was just too stressed to be able to see) and taking him out to the car for a quiet place to eat and regroup. Hubby did such a good job being flexible and supportive in the face of his own frustration. They discussed options, and a now fed and calmer Simon decided on his own to go home and try again in the morning. By this time, it was about 3:00 in the afternoon.

This time we sent Simon off with a backpack containing a water bottle, plus some extra cash in case he lost track of what we’d given him in his wallet (the loose cash from the day before never was recovered).  We also sent along two sets of earplugs to help him manage the noise level.  I couldn’t reach Simon during the morning today, which wasn’t making me happy in light of yesterday’s difficulties, but I also knew he might not be able to hear his phone, and he doesn’t always notice it on the vibrate setting.  He called at lunch to say he was doing fine , and he seemed in good spirits. No mention of wanting to leave early. He found out where his missing T-shirt ended up, and he knew where to find the food. I’m having trouble reaching him again, but by now the event should almost be over. So now I’m just waiting to hear.

************************************************************************************************************************

It’s after 8pm, and my boy is finally back home.  Simon said he had a great time even though his team got eliminated in the quarter finals  and that the medal he is now sporting around his neck is a special engineering award given to his team.   He was talking on the short drive from the school back to our house about underdog victories and mascots and other things he found very entertaining.   Now he gets to relax and stuff himself full of ravioli and garlic bread here at home.  He’s a pretty happy guy and very glad he decided to give this another try. 🙂

 

 

 
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Comments on: "Try, try again" (12)

  1. Wow, what an effort for everyone involved. And how worthwhile in the end.

    • Hi, Sharon.

      I for got to mention in the post that the second time we sent him to the event with earplugs (think I’ll fix that now :)). Even just having the option of a way to turn down the noise makes a big difference.

  2. I don’t think I can ever convey to you how much I needed to read this post today. My son is in first grade and is very high functioning. He has major sensory issues, though, and often has great difficulty communicating effectively, especially when he is overwhelmed.

    Last night, as I talked to him about why school was upsetting him, I just felt so discouraged. I wasn’t getting much useful information out of him and the thought hit me, “What if it’s always this hard? What if he never makes friends or fits in?” I can tell your experience is definitely difficult and requires a great deal of planning, but somehow reading about how Simon was able to deal, even when seriously stressed gave me hope that Danny will learn coping techniques too. We sure are working on them.

    I can’t really explain it, but you just gave me the hope I needed to keep me going. So thank you!

    • Hi, Patty.

      You’re comment has made my day. My own family is less than appreciative of my contributions today (weekends exhaust me), and I’m so glad to know I can be of help to someone.

      I’m sorry it’s so hard right now. For us, first grade was a real low point. It was a very painful time for me, and it’s only recently that I’m starting to feel I might be ready to go back and review our experiences during this time a bit. It does get better. We get stronger and learn more about what works for us and what doesn’t, and our kids keep growing and developing. Even when we drop the ball sometimes – we really should have come up with the earplugs on the first day of this latest adventure – we get plenty more chances to do better the next time. And we learn that messing up isn’t the end of the world.

      I hope things start feeling better soon. You’ve shared some good moments in your blog. There will be more good moments. Hang on, and remember to breathe.

  3. Aspergirl Maybe said:

    I am just so glad for Simon that he is happy to have gone and thinks he would do it again. That is wonderful!

    I’m sure the waiting and wondering were exhausting for you, in addition to it being the weekend. (I often remark to my husband that I hate weekends – I think it’s the lack of structure and the wanting to have my usual routine). 🙂

    • Thank you. Somehow the stress involved makes the happy outcome that much more meaningful.

      For me, I think the hardest parts about the weekend are the lack of structure and having everybody here together all at once. At least on school days they arrive home separately, one at a time, and in the mornings they barely see each other. After the first few hours of the weekend of all being together, it soon becomes clear that they haven’t magically transformed into reasonable individuals who see the benefits of getting along. Instead what I get are three males who have been holding themselves in check for most of the week and now feel the need to bounce off the walls and each other. I’m hoping it will get a little better once it’s warm enough to do more outside activities. I am so ready to be done with winter.

  4. Well done Simon!!!

  5. This is nice news. Congratulations.

    I love the sense of relief and peace when my earplugs expand and drop the ambient noise by 30 decibels!
    They are a great invention!

    • I have been using earplugs quite a bit myself over the past couple of years. I know exactly what you mean about that feeling when they expand and everything goes quieter. It’s wonderful! 🙂

  6. Wonderful. He is doing great on all levels. When he’d had enough, he was still able to seek help about it. Then willing to do it again thenext day. Wonderful coping strategies. That is some hard work paying off right there. 🙂

    • I wrote you a reply at my old address:

      Thanks very much for the encouragement. He’s home part of the day from school today – too many things to handle this week have kind of overloaded his system. But it still feels like making progress overall.

      BTW, I’m changing over to a new address for my blog: dontpanic55.wordpress.com

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