Visit Details 2-27-09

This visit was number 3 for me, but it was the first visit that Norman and I were able to go together. From our perspective it was a wonderful visit. From the staff, however, it was not seen as well. I will explain that later on in the post.

We met with Micki, Eli's therapist at 10 for the weekly session - the first part of which was without Eli. Some things that we learned at this weeks session include...

*All neurological testing is completed (minus the EEG - they are still trying...)
*His eating seems to be looking up bit at least. They have taken away his desert privileges on the nights that he doesn't have a vegetable, protein and fruit. Those are the prerequisites for him to have any kind of treat. They have a staff member sit with him and report on everything he eats. (This is a huge relief to us)
*His aggression is still the same, but hopefully switching from Depakote to Tegretol will give some improvement.
*They are impressed with his schoolwork and level of knowledge he shows. This is HUUUGE to me because they "GET" him. Anywhere else they would call him unteachable and probably behind in his abilities, but that isn't the case at all. He just has to be taught in a way that reaches him. And they are reaching him. He does the best in school. He has to have a one on one classroom help to re-direct him back to the activity when he gets sidetracked. They said that it is imperative for him to keep the activities short, with clear objectives, and then a reward to work for. But he is excelling, and they SEE how smart he is. It matters that others see it, because it does no good if I'm the only one who sees potential in him.

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They told us that he is reading at a end of Kindergarten/beginning 1st level, and I am so happy with that. Considering he's only been in Kindergarten for 4 weeks now, that is awesome.

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After that, Eli joined us, and he was over the moon to see Norman. From there we went to lunch where we bribed him to eat a turkey sandwich in exchange for some of Norman's curly fries. He ate well...which made us happy. We went from there to Point Store (which I promised to fill you in on and haven't yet, but I promise to). He picked out a flute/recorder thing, and then we went to the family center to play pool. After that, we went outside and played with one of Meridell's campus cats, Jill. I clipped Eli's fingernails and toenails, and got his grooming up to date. They cut his hair this week, and he looked so adorable. Short hair and nails...I was happy to get to do my mommy stuff.

After that, we had him rejoin his class and go back to school, and Norman and I went to his dorm to re-arrange his closet and I was glad we did. Norman found some of Eli's pajamas in his roommate's dirty laundry, and I found that someone else's socks had ended up in Eli's laundry. So at least some stuff is staying kind of neat and in order. He has lost an expensive zip up fleece that my dad bought him at the Columbus Zoo, but so far, that is the only missing item.

After that, Norman and I left to do some shopping and kill some time while Eli was in class, but we went back after school was out,and we took him to a playground to spend one more hour before it was his dinnertime and time for us to leave.

Leaving was hard..it was so good to watch Norman and Eli chasing each other and playing on the playground...it was really sad to have to stop that and say our goodbyes. The sadness in his eyes is almost more then I can bear, but even worse than that is the feeling that I have to stay so strong and I don't know what that must seem like in Eli's eyes. He didn't want to let us go, and one of the nurses had to take him by the hand and lead him off to dinner. I know that after we leave, things get back to normal fairly quickly for him, but for Norman and me it's not that easy of a recovery time.

I almost forgot to explain why the day didn't go so well in the eyes of staff there. Apparently after we took him back to class, he had alot of aggression. He was so cheery with us,but as soon as we left to let him get back to class, apparently he had a meltdown. He was hitting and pushing other kids and doing some spitting type actions. He doesn't actually spit..he just makes the gesture of it, which is obviously enough for staff to take notice.

We asked him later why he did that, since he had been so happy and knew that we were coming back, but he didn't know. He never knows...and we've learned that it isn't an excuse. He simply has urges to do things...has no filter to make him think about whether he should or not...so he follows the impulse. That's why he's there...so it's no surprise..or at least, it shouldn't be. I still am shocked sometimes.

Okay, time to wind this up, find the potty and head to our gate. This has been a great timekiller!! :) Sorry it got so long... ((HUGS)) I'll do the point store post next...