Do I have to do everything??

Apparently yes, I do have to do everything. I get so aggravated following up with doctors and people that should be doing their jobs. These people are supposed to make things easier, not harder on me.

WARNING: This is a rant, Beware!

I have been trying to get help with a Behaviorist with Kendal that can possibly work with me and James and learn how to deal with behavioral issues. She is still swinging her arms alot and trying to hit people in the face. She does this quite a bit with the therapists when it is apparent she does not want to do what they are asking. With her communications delays, I think this could probably get much worse as she gets older and gets aggravated and frustrated about things. The speech therapists came in this morning with cut marks up and down her arms from working with a child yesterday. She was literally bleeding from her wounds and apparently this is not too unusual when working with all kinds of children with special needs. In my book, that is totally unacceptable and something that I will not tolerate from Kendal. I feel like if we take care of the situation now when it is a small problem then hopefully it will not escalate to the situation I just described.

Anyway, TEIS (Tennessee Early Intervention System) said they will only get a Behaviorist if she is diagnosed as Autistic. I explained that I needed help and that AS and Autism have a lot of the same behavioral characteristics. The neurologist explained this when we saw him because he has an autistic son and deals with some of the same issues we have. So I then called the neurologist to see if he would write a letter on our behalf explaining that he highly recommends a behaviorist and that the behavioral characteristics are very similar to Angel man Syndrome. Of course, they told me they would get right to it and of course that was almost 2 weeks ago and I have to follow up with them to make sure they are going to get it done. Also, the doctor was supposed to call me with Kendal's EEG results (see 8-13-08 post) and of course I have heard nothing. I don't like to be a bother but my goodness, if I don't handle things they will not get done. I know this doesn't seem like a big deal but in EVERY situation dealing with Kendal's stuff, I have to check, recheck, and call and recall to get things handled. Why can't they just do it??

I still don't know if TEIS will help me with this even with the letter but our service coordinator said we needed to give it a try regardless.

Also, I'm wondering if the geneticist is ever going to call me. I spoke with Terry Jo a few weeks ago (see 9-4-2008 post) and she stated she was going to be sending some information to the geneticist about further testing on Kendal. Of course I haven't heard from anyone. I don't know if Terry Jo sent the info and if she did I don't know why no one has called me. I guess I will have to send an email tomorrow to Terry Jo and see if she sent the stuff over and if she says she did I will then make contact with the genetic counselor.

I will try to make some phone calls and light some fires under someone. Wish me luck!