Monday, July 18, 2011

Mr. Daniel

Mr. Daniel. How I love you! I have had a horrible headache that has lasted a couple of days. You know the kind that make you sick to your stomach and you have an after the headache, headache? My sweet boy who is VERY excited about his violin decided to take it out and play me a song to make my head feel better. He has yet to have a lesson so you can imagine what that sounded like! I had hoped to take him to Music in the Park as we have been SO busy that we haven't had a chance to go all summer and they so enjoy it. He was all excited to go and wanted to take his violin so that he could play for the people to sing and dance to! It is so fun to watch the shear joy he has for the violin. He has loved it ever since he was about a year old and we moved in with my parents while Paul was in Iraq. My sister Hannah was learning to play the violin then and he would beg her to play for him. (Eliza was learning the Viola at the time as well and Reagan would scream when she was a baby anytime she hear Eliza play!) He is so excited to start his lessons this Friday with his little 1/8th size violin. I really think it will be good for him as he learns so well with music.

As I have mentioned in other posts we have been very busy getting Daniel in to see therapists and doctors. We decided that even though the school district had decided that he no longer needed speech services that we needed to have him evaluated by a private speech pathologist as we still had concerns. She finished evaluating him last week and while she hadn't scored the results yet felt that there was still definately a need to continue speech with him. As soon as he doesn't have speech therapy he starts loosing all he has gained and we really don't want that and there are a few other issues there as well that she saw. So once a week he gets to go play with toys and work on his speech with her.

We also had him evaluated by an Occupational Therapist. This was a bit of an eye opener when I read the report. There were all the things that we had known about the ADHD and mood disorder and plans on how to work with him on increasing his abilites in these areas but they had also noticed some other things. Like low muscle tone, the muscles on his left side are significantly weaker than his right side. He doesn't have a lot of strength and tires easily. When going up stairs instead of changing feet he puts the right foot on the stairs and then brings the left foot up to it. He has never been able to catch a ball, he doesn't have the strength to push the pedal of a bike down when it gets stuck at the top. For him to sit and write something (which he hates to do.) It literally takes all of his body to do it. Not just his arm muscles. I have been telling the doctors for a few years that he shouldn't fall as often as he does or run into things, (He can't plan quick enough where to put or stop his body.) and they would never listen to me. So we are now in the process of getting a Physical Therapist evaluation to see how far behind his gross and fine motor skills really are. Because we are at the end of medications that we could currently try for his ADHD and none of them work or he has really bad reactions to them, with this new information about his muscles and etc. we may have to look at seeing if it is just a symptom of something else that is going on. The good news is that he LOVES OT and cries to go there. They are really making a difference for me too in helping me find other ways of working with him.

He will be doing a sleep study the first part of next month as he has had these sleeping days where he would sleep for 20 hours in a day about once every 2 weeks to week and a half. Then between that he would sleep during the day for several days about 6 hours or so and still go to bed on time. Part of this was medication but he still continued to do it off and on. So we are exploring what is going on with that. The sleep doctor supected sleep apnea which runs prolifically through Paul's Dad's family. I've never seen him quit breathing  but the doctor said that ADHD misdiagnosed frequently and it is sleep apnea, as kids will be so tired that they will just keep going and not stop. We'll see what the results are, but it was interesting to hear.

And today we recieved the results from the Neuro Psychiatric evaluation that we had done. It confirmed basically everything that we had said but helped us understand that there are reasons for his behavior and now we have the tests done to back up what we are saying and what we need the therapists and doctors to do. She said she would diagnose him with Aspberger's but he has language problems and you can't have language problems with asperbgers. He would be on the autism spectrum due to his developmental delays but he has none of the odd behavior that autistic children have. He doesn't get social cues by reading faces at all. He is just starting to figure out that what he is thinking isn't necessarily what you think. Ex. Lying is usually learned around 3 years of age. They figure out that you don't kmow what they are thinking. Daniel at 5 is just now starting to figure this out and probably at least partly because of Reagan figuring it out. He scores average on his fine motor skills but only because he works SO VERY hard to make things work. The doctor felt that as we worked with OT and Speech that a lot of his emotional outbursts will end because he won't have to work SO hard at everything, and he will begin to understand things a little better. He definitely has ADHD but hopefully as some of these other things get taken care of he will be able to control it a little better.

Daniel continues to see a Play therapist which he loves. She has been working with him the longest. She is a treasure that we never want to give up! He does much better about moderating his emotions during that day after seeing her. He also sees his Pyschiatrist now about once a month. Which is so much better than once a week or every 2 weeks!

Recently at his 5 year old check up Daniel was not able to pass the eye test with his glasses on... We just got them in February. So we are waiting to go see the eye doctor again to see what's going on. Unfortunately since we have government health insurance the soonest they can get us in is September 8th. But don't get me started on that! I could go on forever!!!

So Daniel's life very busy with all of this but you know every single teacher, therapist and doctor has said of him that he is really a sweet boy and that he really works very hard to do what he can. For that I am grateful that he has the spirit to work so hard and keep trying to do his best even though for him some of the stuff is like moving mountains.

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