Heavy sigh.
Back in May, I got a heads up from Eli's aide and teachers about what seemed like a really great opportunity. Japan Art Camp held at the local University. Eli has fixated on Japan and China for the past several months, and I jumped at the chance. The camp runs for one week, from 1:00-4:30 in the afternoon. Before I officially signed him up, I spoke personally with the director of the camp. I wanted to make sure Eli would be welcome, and I also wanted to make sure that they could accommodate his needs if necessary.
I told her that he is verbal, functions fairly well, and is fascinated with Japan. We decided to give it a shot and I signed him up early, as space was limited in the program. Eli was completely thrilled about it. Yesterday was the first day of camp and I walked him in, helped him remove his shoes and stow them in a cubby, and got him settled in. He was slightly apprehensive on the drive to campus, but it quickly turned to excitement when we were walking up to the facility.
I waited for a few minutes before I left, assuring the assistant director that if any problem arose, I was a short drive away. I waited. And waited. No phone call, so I assumed it was going well. At 4:30, Jim and I picked him up. The assistant director told me that he had done very well, but had seemed ready to go a little early, and would I please talk to him about being quieter during the tea ceremony. No problem, I talked to him about it both last night and today, and he promised to be more quiet and respectful. He also had a flower arrangement to bring home, which he was pretty proud of.
Today, however, was a different story. I dropped him off at 1:00, helping him once again get settled in, reminding him to be quiet and respectful. At 2:35 I received a phone call saying Eli was not having the best time, could I please come.
I hauled ass across town, wondering what was going on. I got there, and the assistant director showed me to a small room off the hallway where one of the young people helping was sitting quietly with Eli. Eli by this time was completely calm, having a bottle of water and talking normally. The guy helping him was nice, but he said that the sensai was upset that Eli was taking so much of his attention, and wanted him to spend time with the other kids. Fine, I totally get that. Then he suggested that perhaps just a tour of the facilities might be more appropriate; that Eli might be able to handle that better. A tour? Really?
I asked him what had gotten Eli so upset. The kids were working on a project painting characters for a "scroll" and he had gotten bored, so he quit working on it.
When the sensai came around to look at the kids' scrolls, Eli was upset that his was so incomplete, and he said he would rather have the nice one from Japan that was on display on the wall. No, duh, who wouldn't want that one instead? At that point, apparently, all hell broke loose and Eli started crying.
I took Eli up front to put his shoes on and get him out of there. Tears were stinging my eyes with the frustration of my child once again being excluded. The assistant director stood nearby and when I had finished getting him ready to go, she tried to talk to me, but I really wasn't in a mood to talk. I shared with her my frustration about my son being excluded and the lack of ANY decent programs for kids like him. At that point, she mentioned Larkin's Place, which is a yet to be built inclusive play place for kids with disabilities. At that point, I snapped. I told her that Larkin's Place is years away from completion, and that wasn't really helping my child right now.
I drove home barely containing myself. Jim was home when I got here, and I fell apart. I am so freaking sick of my son being excluded.
I open my email and there is a note from the assistant director of the program apologizing for saying exactly all the wrong things to me. She also said that they would really like to make the program work for Eli. I don't know what to do. I feel so crappy about the whole experience right now. Plus, if I were to take him back tomorrow, I would hold my breath the whole time, waiting for that phone call telling me to come and get him early. So what do I do? Do I take him back, fully aware that another episode could send him right back home, making him feel left out? Should I take that chance?
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Oh Amy, how frustrated you must be. How is Eli taking all this? I have to say, that I am surprised and happy that they are at least willing to give this another chance. I am not sure if any of them have any training, education, what have you to deal with Eli..and maybe they freaked. OK..that is in their defense. Now.. they had fair warning, you would have thought they would have known they were going to have to take some extra time with Eli. (and maybe see or learn something new) SOOOO, this experience is for Eli, right? It's for 3 more days, right? I hate to say it, but you are probably going to have a lot of days and nights waiting for "that" phone call, so you might want to try to leave that out of the equation, as hard as that is going to be...what does your heart tell you is best for Eli??? What does you gut tell you? It just breaks my heart that both of you had to go through this.
ReplyDeleteI felt ridiculously stupid after I mentioned Larkin's Place to you. I know that's in the future and doesn't help things a bit right now. And I said as much in my email to you it's one of those moments when your brain and your tongue just aren't in sync. Also, I'm not the Director, I'm the Assistant Director and never myself mentioned the local the local park district programs----honestly I don't even know what they offer. I was really genuine in saying that we want to make it work with Eli. Yes, we have to balance staffing for the entire program. I thought we were lucky to hire someone (he's not a student) at the last minute who happens to have some experience working with a wide range of children---and who, fyi, seems to genuinely enjoy and like Eli. He did indeed spend most his time with Eli and also spent a long time trying to get Eli calmed down. I put off calling you as long as possible. I hope you'll come back tomorrow, as I said in my email to you. I thought about the time spent with Eli and I decided it was well worth it---we were managing everything else o.k. Part of Japan House's mission really is to make people more tolerant of other cultures----and I feel that includes not just nationalities or ethnicities but also all the differences there are in every one of us. I hope to see you tomorrow....and yes, I know you'll be anxiously waiting for a phone call. I know that feeling from very different situations---all I can say is that we will do our best. Heck, even if we do have to call you we'll have gotten a chunk of a good day with Eli. Hope to see you and hoping that tomorrow is a better day for all....
ReplyDeleteIt's not your fault, really it isn't. I know you tried really hard, and sorry about my own reaction. This is not the last time that Eli will be challenged with social expectations, and he is also responsible for his own behavior. I set the bar fairly high for him, as I want him to succeed.
ReplyDeleteAlso, sorry for misrepresenting you, I'll edit this post as soon as possible to correct it. I believe it was the nice young man who mentioned the possibility of other programs, and I mixed up your comments. I was a bit stressed at the time.
He will definitely be back tomorrow. I talked to him at length about what I expect from him, behavior-wise. Also, I'll probably be a hovering presence just outside, reading a paperback in case things get hairy. Most times, he just needs a break to reset and he'll be fine afterward.
And just so you know, as we were getting into the car this afternoon, me a total mess, he said, "The Tea Ceremony went well today!" :)
HA! I'm so glad....thank you SO much!!!
ReplyDeleteSo much that's so familiar here, though Charlie's needs are such that he wouldn't be able to attend such a camp, at all.
ReplyDeleteAre there any ways to help Eli deal with the sorts of situations as about the scroll? Maybe set up a sense of how much he has to do, based on his interests? (just throwing ideas out here.)
It sounds like he'll be returning---hope things work out---
Amy, so glad that things are going to work out for all. I think everyone is learning .. and the willingness is what is so important, and it doesn't seem to be at Eli's expense. :)
ReplyDeleteYou are such a great Mother. Eli is very lucky..and all the children that follow..are as well. Hope you are feeling better.
Carla