Tuesday, June 26, 2012

Beyond the Challenges

As we schedule activities and experiences for our kids, on the forefront of my mind is special considerations for each.

For Emmett, just make sure he has lots of snacks because the kid eats all the time (note that he is *not* the one with PWS).

For Cole, he is allergic to peanuts and tree nuts, so please do not feed him anything with those and I have an Epi-Pen should you need it.

For Dean, I still haven't figured out the degree of sharing concerns that I should have. Two definites are making sure that he only eats what I provide him, and an extra pair of eyes and hands for supervising on things like stairs, the playground, and fine motor activities. Oh yeah, and Dean's a runner, so you need to watch for that. And he understands pretty much whatever you are saying, so treat him like everyone else in that respect.

From there, I could keep adding. Watch him outside because he quickly overheats and runs a fever. If the schedule changes and he can't go right to what he was expecting, he might melt down. Singing him a song and/or giving Dean a hug will help. He doesn't talk much and so these are some of his signs and what some of his words will sound/look like to you.

I usually leave out those last things unless someone asks. Usually, they're unnecessary. But I'm still working on a happy medium. It depends on the situation. No matter what, I want to give these tidbits to caregivers because they are necessary for Dean to stay safe and participate in what is going on. At the same time, I don't want Dean to sound like a super-complicated little guy because, more than that, he's a super-awesome little guy. I've often thought that I wish I could just send Dean to school/camp/whatever without all sorts of instructions and accommodations... but it's just not the case. Sometimes it feels like everything comes with a disclaimer.

We have VBS (Vacation Bible School) this week at church and I stayed in Dean's classroom yesterday to help him. Today, I left and let him do his own thing (at least for part of it... I love to come back and be a fly on the wall because I just really like my kids). Cole, Dean, and Emmett are all so comfortable at our church. Dean did well. In fact, he apparently is quite the photographer. Allison, our youth pastor, showed Dean how to take pictures on her iPhone (I hadn't showed him yet) and Dean went around taking pictures of everybody. Haha. My favorite is this one he took of himself and Allison (and Malone, his leader for his VBS class, in the back):

Allison said it made her morning. I got a little teary-eyed for a few reasons. So grateful that others see how amazing our Deano is and don't just see the challenges. So grateful that all of our kids feel at home at our church. Grateful that I am able to find places where Dean *is* safe and people who are willing to take a few steps to make that possible. Grateful that Dean is having a grand old time. :) Grateful.

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