Summer Dreaming

DAY 10:  Summer Dreaming

I was thinking about summer plans today.

I am a summer person, and I love, love, love summer.  Love the beach, love the pool, love the heat, and most of all love the freedom from the set schedule that school requires.  Bring on the weeknight pool parties, late night ice cream runs, and the general enjoyment of lazy, hazy summer days.  But as much as I adore the freedom from that routine, Coleman needs it, and the summer brings on new worries about maintaining an appropriate schedule for him. 

According to Coleman’s IEP, he qualifies for what is known as ESY – the Extended School Year.  Essentially, any child that would substantially regress while out of school for summer is eligible for ESY.  Years ago, the ESY class Coleman was in was not terribly unlike his regular class, and the teacher that taught it was his regular school year teacher.  But starting a couple of years ago, the program substantially declined.  From what I understand, the summer teaching is optional, and the pay is hardly breaking the bank.  As a result, many of the teachers instead do private teaching or find other better-paying work for the summer.  And what you end up with is unqualified, unprepared babysitting.  Does it show that I was bitter over it?  On the first day that summer, I walked Coleman into the class – there were at least 20 children there – and three very nice but no so prepared ‘teachers’.  It was pure chaos.  All of the children were on IEP of some sort, and  2 other kids from Coleman’s Special Ed class were there too.  I stood with one of those moms and we stared in disbelief.  I managed to get one of the teachers aside, and introduced Coleman, and told her he had Autism.  I won’t go into the painful details, but I had never left Coleman anyplace where I truly worried about his well-being, until that day.  I tried calling the school to see how it was going, but of course there was no answer.  I kept thinking the worst, and was ecstatic to see him in one piece at pick up, but was no less appalled at the prevailing sense of chaos that still filled the scene.  Later that night, Coleman kept repeating a new script:  “Just sit down and color!” “Just sit down and color!” “Just sit down and color” in his angry voice, over and over.  I was shocked – Coleman couldn’t even hold a crayon then, much less color.  I could imagine what had happened  – he was probably standing up, asking “Time to go home?” probably asked several times, and they were probably annoyed with him, brushing him aside and telling him to just go and color.  I felt awful for Coleman, and worse that I had not listened to my own intuition that I should not have left him. 

Coleman didn’t go back again, instead we kept him home with our sitter that loves him, and we tried to work on skills on our own.  I heard that several people complained that summer (us included) but the fact remained:  to teach a summer program for children with autism, you need not have any kind of special education training.  In fact, you don’t even need to have a teaching degree.  It was glorified babysitting.  And  I could give him that myself with someone that actually cared about him.    

Last summer we were adamant that we would not participate in ESY, and decided to enroll Coleman in a summer camp.  The camp we wanted to send him to was the same camp the girls went to for 3 weeks each summer and they loved it.  It was very outdoorsy, with cabins, sports, archery, arts & crafts, and certified swim lessons twice a day.  I loved the camp too, but loved it even more after I called the owner and talked to him about Coleman.  He knew the girls, and he didn’t hesitate when I told him about Coleman attending.  I told him Coleman would have an aide, and he said no problem at all.  He was all about inclusion, all about how they’ve had several kids with autism at the camp, and how they welcomed everyone, and “make sure you have his aide come to our Counselor orientation so she can get to know all the other counselors too.”  He was a gem, that guy, and I knew Coleman would be welcome at the camp.

Coleman absolutely needed an aide to go with him – he would need help in all areas, from sports (he had a hard time even holding a bat), to swimming (he cannot swim), to arts and crafts, to going to the bathroom (he is potty trained but the process is not yet entirely independent).  Like so many things, hiring an aide was expensive.   We had learned that the school would cover the cost of the aide in place of ESY, as long as we covered the cost of the camp, so at our IEP meeting that fall, fresh off our horrendous ESY experience, we requested it and they agreed.  And so, as January rolled around and I prepared to register all three of the kids for camp, I called the school to re-confirm what we had talked about at the IEP meeting just a few short months before.   I was told someone would follow up with me.  But no one did, and then followed the not-so-fun game of calling and calling and calling and writing and writing and writing.  I had already hired my college sitter Kelly who is amazing with Coleman and whom Coleman adores – but the camp required the school to submit some forms for her to be his aide so I really needed their input.  I started trying to reach them in February, and it wasn’t until nearly June that lovely Director of Student Services finally responded (after I contacted the town school superintendent) and by then the camp was full.  So we signed up for the Town camp which was possibly an even bigger joke than ESY.  Let’s just say that I’m not sure the young person I spoke was really capable of taking care of kids, let alone fielding calls from concerned parents.  I told her a bit about Coleman and informed her that I would be signing him up for the program.  I let her know about the aide and then asked if there was a daily schedule that I could access to help prepare Coleman.  She was charming:  “Um, well, um so like I don’t know if this is ok, like I don’t know if like we can handle someone like that.  Um, will he have behavior problems?  Because that, we, it might not be ok.”  Seriously.  I wanted to lay into her sorry, uninformed little head.  Instead I said, “I’m sorry you must have misunderstood me.  I am not asking for your permission.  I am asking for some guidance and help. If you are not the right person I should speak to, then please let me know who is.”  Perhaps not the best start for us, but I had a call back from someone more senior and more knowledgable and we talked about Coleman and the program.  So I was pretty excited the first day – excited for Coleman, thinking this could really turn out to be great.  Hoping it was going to be fun.  Praying it was going to be tolerable. 

I went with Kelly on that first day, and we were pumping Coleman up, talking about how great it was going to be and even he was excited. “See the kids!” he kept saying.   The first activity was on the soccer field – and Coleman was in his glory with all the kids running about – he was running behind them all as they whizzed past him, laughing away as Kelly and I yelled “Go get the ball!”  It was pretty funny – occasionally he would be so busy laughing he would be running in the opposite direction of the rest of the kids swarming after the ball.  This was the only good part of the day.  As the game wore on, I saw Coleman go up to one of the male counselors.  He was standing in the net, playing Goalie but all the kids were at the other net, except Coleman.  Coleman looked up at him and said “Go get the ball!” No response.  Then again “Go get the ball!”  No response.  “Go get the ball!”  Finally the counselor said flatly, “I can’t.  I’m goalie.”  My first thought was who did you pay to get this job, Mr. Monotone?  Coleman said it again “Go get the ball!”  Mr. Monotone just stared off like he wasn’t even there.  “Go get the ball!” Mr. Monotone still stared off, completely ignoring my little guy, quickly killing the joy I had been feeling.  I walked over and explained who Coleman was and that he had Autism.  Mr. Monotone transformed into Mr. Smug and said plainly “I know.”   Dear God in Heaven, I prayed, please keep me from kicking this kid’s ass.  And the rest of the day was much the same.  ZERO inclusion.  No even a tiny bit of effort to have him join in the group.  In fact, at the playground later, Kelly and I were standing by Coleman talking as he went up and down the slide.  We looked up and sure enough, the rest of his group was filing out of the playground.  We grabbed Coleman and caught up.  “I didn’t realize you were switching so soon” I said.  “Oh, yeah, we’re going to go the water fountain.  You don’t have to come if you don’t want to.”  Like we were some folks who just happened to be at the park playing while they were all in camp.  It was pathetic.  I wasn’t looking for special treatment for Coleman – but if little Suzy or Johnny was standing alone, you can be sure the counselors would have said “Why Suzy/Johnny, why are you alone?  Come play with the other kids.  Other kids, come play with Suzy/Johnny” or whatever.  They would have paid attention.  They would have talked to Suzy or Johnny, and not completely ignored them.   It was immensely frustrating, and terribly disappointing.  The rest of that day, and the days that followed were much the same.  Kelly continued to take him for a few hours over the next couple of weeks, but the first day, the first hour was the only good part.  Otherwise it was a complete fail. 

So here were are again, perched on the edge of summer and I’m starting to fret about what to do with Coleman.  I wish I had the summer off, I wish we had a beach house, I wish we had an endless supply of fun, fabulous things to do this summer, and I wish just saying you wish something made the wish come true!  But mostly, right now, I wish I had a plan for Coleman for the summer.  Which I don’t yet.  And that is starting to worry me.