Tuesday, May 19, 2015

Almost went to camp.......When the double diagnosis bites you in the butt

We've been waiting to send our child to Camp Odayin for kids with heart conditions since we first heard about it at the 2009 Marfan Conference. What a great way to allow our child an overnight camp experience and still know he was safe. Who better than a pediatric cardiologist on staff to make sure his meds were on time, in the correct dosage, and that activity guidelines would be followed? So when registration opened up this year we hopped to it and sent our information in. We requested giraffeboy be placed with his good friend from our marfan group, and we scheduled the required pre-camp physical and waited.

We got the call tonight that giraffeboy won't be attending camp this year or ever there. When we filled out the application we were honest about his aspergers, and apparently camp staff saw ASD and it immediately disqualified him. Although Giraffedaddy fought valiantly on the phone call, explained how high functioning giraffeboy is and that there will probably be plenty of other kids who are at camp with the same issues whose parents didn't disclose their child's ASD diagnosis, or whose child has not yet been diagnosed, the camp staff was firm in their decision. I can't begin to describe how frustrated, how disappointed, and how heart broken I am. It is scary to send your child away to camp, and the casual way they suggested we look into an autism camp for him and dismissed our need for his cardiac concerns to be addressed at camp assures me that they aren't parents of kids who would be eligible to go there.

It doesn't state on their site that they don't allow kids with ASD, although it does say that a cardiac concern must be their primary diagnosis. Our son is mainstreamed, has no aide, does not get "extra help" in the classroom, and except for his social group time he attends, his day is like any other 4th grader's, and you wouldn't know he was on the spectrum just by spending a few minutes with him. Hang around awhile and you'll notice how he fixates on certain subjects, feels more comfortable around adults and younger kids than with his peers, and enjoys and prefers being alone. But it's not hugely distracting, doesn't stop him from functioning at church school, Boy Scouts, and other "normal" kid activities, and it shouldn't stop him from being able to attend camp.

But here we are. Once again at the stage of "taking things away". I don't think it will ever get easier. And I wish, oh how I wish, that I could put him on the bus with the other kids this July for that camp experience. I wish he could know what it was like to be independent at camp at 10 years old, that he could make those camp memories every child deserves to have the opportunity to make, and that he could have that week disconnected from electronics and at one with nature. Mostly though, I wish those people at camp could understand how awesome this kid that they will miss is. It's their loss in the end. We'll go romp through Lebanon Hills, have a campfire in the backyard, and maybe have a weekend tenting it at Lake Elmo. It's not the same as going to camp alone, but it's the best we can do. And most importantly, he'll spend that week with his mom, dad, and sister, three people that truly love him and appreciate him, ASD and marfan syndrome double diagnosis and all. And for that we can all be grateful.

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