Summertime. After the busy school year, you just dream of sleeping in. Lazy days. Trips to the beach. We have Sea World and Aquatica (Sea World’s Water Park) passes. They have special summer concerts and night time shows. It is really fun to go at night when everyone is leaving. We don’t have a pool, but lots of our friends do. I even dream of just binge watching some TV.
What does it look like for my daughter? Sleepovers until I say no. Party after party. BBQ’s. Camps. Volunteering at church for VBS. She is gone more than she is home. My job is being a taxi service as much as she can talk me into it. Her summer is like the summers you can only imagine. The only way her summer could get any better is if we actually lived at the beach or had a pool.
What does it look like for CJ? No Sea World. He hates crowds and will get so over whelmed that he will melt down and take you down with him. He doesn’t do sleepovers. He certainly doesn’t want to sleep at your house unless he is out of town and has no option. He definitely does NOT want you to sleep at his and absolutely positively NOT in HIS room. We call it “The Forbidden Zone”.
People with autism just don’t have regular “friendships” like my daughter does. They might like each other and even tolerate doing things together, but they do not “spend time together” the same way. A friend recently said that it makes her sad that her son has no friends to spend time with. At graduation this year, all the kids were so excited and so happy CJ had come to see them. They were taking photos with him and signing yearbooks. They stood in front of him and invited each other to come over for open houses and parties that night or that weekend. They are great kids. Not one invited CJ to so much as stop by. Were they horrible people? No. Were they trying to exclude him? No. It just never occurs to anyone to include him with their other friends. I don’t think he notices, but I do. Every time it starts to look “normal” or as normal as we can get, then it doesn’t.
One of the highlights for CJ this summer was volunteering at VBS. I had told them if they could come up with something for him to do, I would volunteer as my daughter was volunteering. No pressure. It was fine with me either way. I made that clear. I got a phone call days before it started with an apology that he hadn’t gotten back to me sooner. Me….not a problem. I had told him no pressure. Then the shock….they had a job for him. Me…???????!!!???? What is he going to do? Security. Me…….. Security? He will be helping the guy doing security. They will walk around and make sure no kids are escaping, get bandages if needed and just be a presence. No mention of my job. I don’t even care. I’ll do anything. CJ has a job. I do make it very clear that if for any reason it doesn’t work, we can stop at any time. If the security guy just doesn’t want him to do it, let me know. No hard feelings. We go to the volunteer meeting. They hand out shirts and jobs. My name is never called. I ask. I have not been assigned a job. No problem. I’ll show up and pitch in where needed. This way I can take CJ and leave if things go down hill. We are there no more than 15 minutes the first day when both my children ask me to leave. I make sure everyone has my number just in case. The other moms look at me like I’m crazy for sticking around and tell me to run for it! I do. I get my house clean, run errands, meet a friend for breakfast and even get my hair cut. What a gift! CJ loves it. LOVES IT! He tells everyone he talks to that he has a job. A job? He is “working security”. Everyone has the same confused reaction. Security? Yes. At VBS at his church. I got more calls than I can remember in a long time. CJ said he has a job working security at VBS? Me…yes he does. He is still talking about doing it again even if he has to wait until next summer. Did I mention before that I LOVE MY CHURCH!
Probably the biggest highlight of the summer for CJ is CAMP! It is a sleepover camp. The first time he went I was a wreck. Not too much of a wreck to take off for the beach, but still nervous. He is so excited that he keeps asking me insane questions over and over. When does he leave? What cabin is he sleeping in? How would I know? We talk about all the activities. What are his favorite things to do? Swim. Games. Seeing friends. He can’t wait to see “his girl”. Who is “your girl”? He doesn’t know yet. He will have to see who is there. I asked about this. They told me that each time he goes to camp he picks a girl and then stalks her all weekend. She is usually a typical buddy. They always tell her that he is harmless and he doesn’t come within 10 yards of her, so no big concern. Days ahead of time, he wants to pack. OK. Get your bag and bring me some clothes. He brings his duffle bag he uses for camp filled with every pair of underwear in his drawer and a bathing suit. Well…. You might just need a few more things. He goes and has a great time!
He does two more camps this summer. Both are day camps. One is Camp Shriver. It is part of Special Olympics. It is FREE! Did you read that right? FREE! They use a local high school where they have use of the gym and pool. He swims every day and loves every second of it. He comes home and tells me about who he saw and who he likes. He also tells me about who he hopes won’t be there or won’t be in his group the next week. Some things are just the same for typical and special needs kids. There are just some people we like more than others.
How do we get here?
You know how you plan your summer and summer vacations? You figure out a budget, pick locations, find rentals or hotels, decide on camps and other activities. If you are my daughter, the biggest obstacles are time and money. If we had the money, she would be at camps one more awesome than the next until it was time for school to start. She would have nothing but parties and fun with friends.
If you have a special needs child, it looks very different. First, you have to find possibilities. What camps are even available? Day camps or sleep over camps? What are the costs? Where do you want to go on vacation? What options are there for rentals? What can your child tolerate?
When considering a camp, first you have to find out if they will take your child. I have been extensively interviewed. Some camps require a face to face visit before accepting your child. The child is the other problem After the age of 22, most camps won’t take them. The problem here is that unlike most 22 year olds, they still can’t stay alone. Can your child sleep away from home? Will the camp provide the needed supervision? Will the camp give your child medication? Will your child be kicked out?
How do you get information? Like anything with special needs kids, it is mostly from other parents. People post on Facebook, email, call and even text. There are web sites and suggestions from schools. We are talking desperate here. I saw one post that said “Does anyone know of a sleep away camp that won’t throw my son out?”. She was serious. One mom posted to pray that her son made it through the week this time. I talked to parents who had been thrown out of camps before the summer was half over. I ran into a mom about half way through the summer who has three boys with autism. Yes, you read that right. Three. She was asking, like we all do, what we were doing this summer. The question is not just polite courtesy like it would be with my daughter. It was quiet desperation as she explained they weren’t eligible for one camp and she had heard of one that we were going to and that she HAD to find something else to get through the rest of the summer.
I have been talking to friends all summer whose kids are making them nuts. Their kids are fighting. Their kids are bored. I understand. I really do. I also can give you a list of parents who would kill for those complaints.
What happens now? What does the future hold? As our children turn 22 and “age out” of schools and programs, what happens to them? What happens to our other kids? What happens to our families? Right now, I don’t know. I have hopes and dreams like everyone else. There are more options every year. A summer job would be great. As he gets older, I would love for him to get some job experience. I would love for some different camp type options. When typical kids get older, they often work at the same camps they went to as kids. They have started having some of the special needs kids volunteer at the camp CJ attends overnight. If he could work at a camp for even a few weeks, it would be great. I do know one thing. As the population of people with special needs over the age of 22 increases, the need for something for them to do increases exponentially. CJ for one WANTS a job. After all, he does have experience working security.