Friday, August 29, 2014

The End of Summer

We feel quite blessed to have had trips to see family this summer. We saw the Kradels, the Wilcoxes, Bibi, the Hastings, and some of our Godfamilies as well.  We try to pack in all kinds of visiting in the summer because once the program year starts we can't get away on the weekends.

Our last few weeks included a visit from our godchild and family, a few days at the beach with college friends of Adam's, and a visit down to Virginia to see my brother and his family.

Thursday, August 14, 2014

Summer, Phase 2

The kids have now completed their "summer camp" phase of summer. The two older kids did soccer camp.  The two younger kids did art camp.  And, Elias is finishing up Camp Pegasus. Here are some pictures of the happy campers:

Elias' self-diagnosis

With Elias' permission I am sharing this story because "other kids need to know about Tourettes"

During the course of our independent evaluation, the psychologist took Adam aside and asked if we had any history of Tourettes' Syndrome in our family. Interestingly enough, the answer to that question is yes.  She told him right then and there that she observed a lot of motor and verbal tics during the course of his testing.  Adam happened to mention this information to me, but it sort of washed over as were concentrating on so many different things.  In the meantime, we had to sit tight and await the report so that we would have a document to counter the school district's evaluation.

It arrived by email and I pored over it in the Starbucks parking lot. There I was glued to a tiny Iphone as my tears smudged the screen. Yet one of the most startling pieces of the report was that Elias is likely to have Tourettes' Syndrome.  Of course, I went home and looked it up.  I ordered the books she recommended on the topic and we made plans to confirm the diagnosis by starting the bureaucratic processes of getting him into CHOP to see their pediatric neurologist.  In the meantime, while I was perusing Amazon, I saw a book written about Tourettes by a nine year old boy.  I ordered it and planned to pull it out if the diagnosis was a yes. Well, I think you know where this is going.

Elias saw the book in and amongst the mail on the counter.  He read it unbeknownst to me.  But, that night he came to me and said, "I have to ask you something.  Do I have Tourettes Sine-drone (his pronunciation)?" I was so stunned, but recovered by saying, "We think you do and we are going to try and find out. Why do you ask?"  He began to tell me everything he read in the book and how it is just like him.  With my little boy perched next to me on the couch, I called Adam to join us in this heavy conversation.

Elias told us how now he knows he can't help making the spaceship noises and his daydreams.  He told us that now he knows why he was the "weird kid in second grade."  He told us that other children asked him why he did what he does with his hands and since he didn't know why, he told them "It wasn't their business."  He told us how one boy always said that Elias was holding a crystal ball and looking at it in the air. (He has a tendency to hold his hands in that position when he is excited.) On top of the realization that his hand motions and humming and other noises are involuntary, Elias also assured us that "it doesn't hurt when I day dream and I kind of like it." We finally understand what was going on when he began to do these things on the playground, at home, and sparingly in school.

You see, the school had seen some of this behaviors, and noted them, but were unconcerned. Whereas, we saw them recur and recur, but just thought they were  a part of our very imaginative boy.  We also saw them really begin this year. It turns out, tics usually show up in kids between 7 and 8 years old.  The other thing we learned is that kids can hold their tics in when they are engrossed or trying really hard.  But, there is a cost in doing so.  It can hurt them physically, but it also means that at the end of a school day they are exhausted from trying to hold their tics in. The release is often experienced as meltdowns.  This helped us understand why Elias would meltdown at the end of a school day, or more often, at the end of the school week.

As we continued to process the book with him, we got glimpses of why he reported that he hated school on his evaluations.  Apparently, they would do math facts at the end of the day, when he really needed to "daydream' (tic) and he just wanted school to be over so he could get it out.  At least we were starting to see why he had expressed such a negative view of school.  The final question was the one that pierced my heart: "Will you tell my teacher next year that I can't help it?"  And all I could say was that I would...(scared to death though that I wouldn't be heard.)

That evening on the couch was full of tears, snot, and lots of tears, but it was such a release.  That boy has been so embracing of this diagnosis; I think because he feels he is not alone and because it fits what we have seen.  Of course, he has asked "Why do I have all these problems?" and we have had to talk about the fact that everybody has challenges they just manifest in different ways.  But, he has also already begun planning how he will tell his class about Tourettes and he is finding ways to become his very own advocate for self-care.  Now at night, he asks for time to go off and daydream and he does, and we let him go full force so that he can climb into bed sufficiently exhausted.

The book Elias read is called Tic Talk and it has opened a whole new conversation in our home-- a bit painful at first, but highly redemptive as well.