Summer has come and gone in a blink of an eye. School started on August 9. It was a pretty low key few months with not much traveling. Wyatt enjoyed being home hanging out with his friends. On the other hand, Wynston was only home for about 2 weeks this whole summer. We gave him time to be himself and go to camps where he can just play and relax without the stress of Wyatt overshadowing him.
As I take time to reflect, there are a few moments that really shine. We all went to the PPMD conference in Dallas at the end of June. It's hard to describe the feeling of being around people who "just know."
The kids joined us again this year, Wynston of course made friends super quickly but Wyatt on the other hand struggled. He wanted to be out and about with Wynston but would then get overstimulated and all of his behaviors would come out. Even being around people who understand it is still embarrassing. With so many people in a small space he got overstimulated multiple times and and acted out because neither himself or us realized how much it was affecting him. And even though we are around people who "understand the DMD brain and behaviors" there are still some parents who don't get it. I guess their child is one that isn't affected by the behavior challenges. Good for them but I wished they would try a little harder to understand and show some empathy. I guess I'm still affected by the last night at the final party when Wyatt started running his wheelchair into some furniture. Wynston tried to help and then ended up calling us. When Patrick showed up another DMD dad was there telling Wyatt he was going to call security. WTH they just had a presentation on how to help our boys when they get out of sorts and confronting them with a threat is definitely not the way. Patrick almost lost it on the guy but instead we removed Wyatt from the situation and got him some food and sat with him til he calmed down. I am still beating myself up about it, we weren't proactive that night and didn't recognize how much he needed a break after 4 days inside a hotel. I was embarrassed because my almost 17 year old couldn't pull himself together in front of a crowd. I live and breathe this everyday but still it is a hard pill to swallow.
So as summer has wrapped up the stress of school is beginning. If you have followed me you know that school is extremely stressful for Wyatt and myself. When we got his schedule we were all excited that it appeared manageable. Unfortunately not even a week in and we are stressed. He is leaving art class because he is not good at art, but his teacher just wants him to try. So we will keep prepping and hoping that gets better. But the biggest issue is the change in the lunch schedule; instead of 3 lunches they changed it to just 2. As you can imagine there are so many students in the cafeteria he was overstimulated, frustrated and unmanageable. Lunch is the only thing he was looking forward to and now he isn't going. He goes to his 2 classes and then comes home. I have driven up to school shaking my head and walking in with my head down. I feel so embarrassed because I wish it wasn't happening again. I hoped for the best year, one that was calm and manageable, but not so much.
I feel like here we go again, day 6 and we are scheduling a meeting to make sure all of the preparations and plans we have made are being used. Unfortunately, I don't think they are. Do I think it would have avoided all of the issues so far....no. But do I think it would not have been as bad yes.
It's not easy to do this and stay positive and keep my cool and as I have said many times before....I love him unconditionally. The teachers don't have to love him so I can only imagine how hard it is for them to understand. I can only hope and prepare even more for better days ahead. He needs to finish this week and make it thru Monday because after that we will be heading north for his annual doctor appointment.
It has been a long while since I have posted because I have not been able to put my thoughts into words. Life has been challenging and untangling my thoughts makes me actually process all of my emotions which sometimes make the emotions come back with a vengeance.
If you have followed my blog you know this is the most anxiety producing time of year for me. So please set a special intention that school life will improve and that the report from the specialists will be stable! I will give a full report on how the appointments go as soon as I can get my thoughts together. It
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