Guest guest Posted May 2, 2012 Report Share Posted May 2, 2012 Hi all, Sorry it's been a while since I posted. I'm very pleased to report that my son is continuing to make good progress at 's. Thank God he is continuing to gain back some weight and is now up to 116. He still needs to gain another 10-15 lbs., but he's eating really well now and not having to drink Ensure anymore. We had our first visit with him this past weekend. It was the first time we'd seen him in 6 weeks, the longest we've ever been away from him. I was really nervous about how things would go, but it went really well. He did A LOT of stuff for our first visit. We made our visits in short blocks of time as he tires easily, so we would go and take him out to lunch or to the mall, then bring him back and come back a few hours later to do something else. It was very stressful for him getting in the car and going places and he'd start out saying " I need to rest, it's too stressful, " but I would tell him let's just try and if it doesn't work out we'll come back. So each time he would agree to try and then we'd end up going. While we were out places, he would continually say how stressful it was and that his tics were giving him trouble, but he pushed through it nonetheless. Just this week he finally started attending group therapy and educational therapy. He's only able to go for a short time, but at least he's trying, which is great. Now granted, if left to his own devices he'd probably be hanging out in his room and in the day room and not doing much else, but he's definitely becoming more engaged with his peers and showing signs of progress. He's still having some bathroom issues and showers and hygiene is still a struggle, but his is complying and doing what he's asked to. With a few exceptions, he was pretty compliant on our visits and some of his old behaviors like wanting to stay sitting in the car for hours and turning out lights did not surface. While I'm of course thrilled with all of his progress, I also realize that he's at this is WITH a whole treatment team in place, 24/7 supervision, a regimented schedule and structure. If all of that were taken away I don't think he would be able to function very well. One of the biggest accomplishments is that for the first time since his Tourette's surfaced 2 years ago, he is now able to do his tics in front of peers. I can not tell you how HUGE that is for him!! Before going to 's, he was petrified of any peers ever seeing or hearing his tics. His tic now is pretty loud and very difficult to watch as he strains himself a lot physically, but he sat right there at the table in the dayroom and did his full blown tics without reservation. The kids are great, they just keep doing whatever they are doing and are clearly understanding of his situation. I'm going back to visit in about 3 weeks so it will be great to see him again and see how he is progressing. Glad to give some good news for once!! Quote Link to comment Share on other sites More sharing options...
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