Summer time is almost here. The kids are ready. The poor teachers as SO ready. Even I am a little ready for the craziness of all the activities to stop for a while. Every parent knows that the bad part of summer is “What am I going to do with these kids all day”? That’s normal. Typical. My neurotypical daughter is going to a cheer camp to learn how to flip some more, because you can never flip too much. She also has big plans with friends to swim at their houses and play outside. I plan to let her.
Summer with CJ, however….
We learned a long time ago that staying in a hotel with CJ is basically impossible. It packs us in too close together. Eating out is not an option most of the time either. It’s funny. I thought money would be the issue. That it would be too expensive to stay at the nice hotel. Too expensive to eat out for all our meals. Nope. The problem is that it just plain doesn’t work.
CJ gets up as early as 4:30 AM on a daily basis. Yes, you read that right. Being autistic means being all about The Schedule. Vacations, weekends and days off mean nothing to someone who is “on a schedule”. He HAS to have his medications as soon as he gets up or we will all suffer that day. That means one of us is up at 4:30 AM, rain, shine or insomnia that ended at 3:30 AM. It’s irrelevant. What’s relevant is the prospect of a day with CJ, unmedicated (Him, not me). It’s nice that we can now stagger into the kitchen, give him his medications, give him something to eat and then stagger back to bed. Mercifully, he will now entertain himself. If there is more than one room, we can sleep in one and he can watch TV, etc. in the other. But does anyone with a budget and an autistic kid “on a schedule” have the funds for more than one room at a hotel? Not if we want to eat too.
That said…eating out….NOT fun! The time has to be exactly right. The food has to be just right. If it is, we eat. But once CJ is done, he wants to leave. Now. Immediately. He’s done. We’re done. Doggie bags and unpaid checks? Irrelevant. Oh, CJ is personable and funny. The servers always love him. He has nice manners and thanks them. But when he’s done concentrating on eating, the sensory overload from the restaurant becomes too much. Time to go. He’s done.
Call me fussy, but I don’t want to get up at 4:30 AM to get dressed and go out to eat. If we have a condo, at least we can cook in our robe and slippers. And maybe go back to bed. Sometimes, I am not thrilled with cooking, etc. on vacation, but hey!…if we get a vacation, it’s worth it. We live in FL, so there are lots of options here. We prefer the beach on either coast and try to make that work. We just have to remember that when CJ is done…he’s DONE.
The newest, greatest thing I’ve recently discovered is a youth group called “Capernaum”. It is run through Young Life Ministry and is designed for special needs kids. The kids meet at a local church the last Friday of each month. They get dinner (CJ’s favorite part), sing songs, fellowship and have a short lesson. (When I ask about it, he can usually only tell me what they ate.)
The very best part about Capernaum is that they have summer camp.
Let me say it again. Summer camp. As in….SLEEP OVER SUMMER CAMP!!!!!! It is 4 nights! 4 whoollle nights! (Don’t get me wrong…I love my kid, but my husband and I love each other too and we occasionally need a break.) Last summer was the first time CJ went. He didn’t really want to go and I was really nervous. (I won’t elaborate on what made me nervous. If you have an autistic kid, you’ll already know, and if you don’t, you’ll think I’m borderline crazy.) He did great and he had a great time. He didn’t even blink when he went again for a weekend in January.
This summer, we are trying for a new day camp. The problem with “special” kids is that the older they get, the fewer and fewer options there are for summer activities. I have seen two posts on Facebook in the last week from people looking for ideas for their middle schoolers with special needs. These kids have been turned down by places that can’t accommodate the specific disability. The parents work. There are few options. I had someone tell me that they are paying someone $250 a week to watch their almost 20 year old son for the summer. Summer vacation here is 11 ½ weeks long. I counted.
That’s a long time. That’s a lot of money.
Of course, the very worst part of summer is that “the routine” is messed up. DO NOT mess with an autistic person’s routine. I have had CJ standing in the driveway crying because the bus wouldn’t be coming over Christmas break.
As we speed toward the end of the school year, I am reminded once again of the “can’ts”.