The Pow-Wow Meeting

So today was our pow wow with Jed's new SLP and coordinator. It went very well. I think we were there for two hours. I was a bit concerned about this meeting only because of previous comments made by some people that had me worried that this may not be the program for Jed. But I was pleasantly surprised by the team work mentality. Jed will have speech therapy twice a week. He will get the short end of the stick when it comes to half days (the program runs on the traditional school calendar) as they have one each month, pretty much on his day for therapy. Oh, well, that still puts him ahead overall.

We discussed Jed's OCD issues with the SLP. I really liked her take on it, although I feel that it maybe only partially true for Jed. She thought that perhaps because Jed can not communicate, which is a big issue, his need to lay things out and show us could just be his way to take control of something in his life. He is really good at sorting things and it may just be his way of saying, "hey, I may not be able to talk with you all, but look what I CAN do!" Again, I thought that she may be onto something, but at the same time I still feel this goes deeper than that. But it was great to have another take on it!

I have been trying to do research on my own about apraxia as there isn't anyone else to talk to about it. So I asked the SLP if she would be able to tell (a few months down the road and has had time to work with Jed) how long she thinks we might be looking at having speech therapy. At first the coordinator had told us of a boy who was very much like Jed, starting from the very bottom rung at the same age. By five as he was entering kindergarten no one could tell he ever had a speech problem. I told them, that that is what is so hard about this as you hear the stories of kids who had one or two years of speech therapy and they are good to go. Then you hear of the stories about children in speech therapy for 5+ years! So then they told me that they personally believe that the children who recover so quickly really didn't have apraxia. The very nature of apraxia isn't something they feel, from their experience/teaching, is resolved that quickly. They feel that anyone with true apraxia will need intense therapy for YEARS. Oh, well that wasn't exactly what I was hoping to hear :-) And then the SLP said that from what she has seen of Jed and his abilities that she feels he truly has apraxia. We were able to see the results of the educational test she did last week. She said that although he tested mildly delayed (he was all of one point into the mild delay range) she felt that he actually was worse off than that as he had more than half of his points come from the fact that he knows a lot of his ABC's. Again, that wasn't what I had expected to hear, although we've always known that Jed has always seemed to be "off".

But perhaps the most disturbing idea brought up was one of him not talking....ever. I some how don't believe that will happen. Again, though, I was taken off guard when she brought that up. At first I wasn't sure if she wasn't using that possibility to just make a point. The first time she brought it up was when we were discussing his IEP (Individual Educational Plan). She layed out the areas she was going to work on. And we were talking about the need to change the IEP if we thought something wasn't working. So she said that she put this down to start with and that if we came to a time six months, a year (no real date given) and he made no progress she said that you can't beat a dead horse (not her exact words, but the same idea), if he can't do it, then he can't do it and other actions would be necessary. What those were I wasn't sure. She mentioned that our goal is for him to be able to communicate and that there are other ways to communicate other than verbally. WOW, did I hear her right? Like I said, at first I thought she may just be making a point, but she repeated herself at the end of our meeting. I have to say that through this all I have had a peace that everything is going to be OK. However, even though I know that peace comes from the Lord, I also know He hasn't specifically given me what that "OK" will look like. I have a peace that everything will be OK, not a peace that Jed is going to talk. Does that make sense? So when she made those comments I kind of started saying, Ok, Lord what does all this mean, why did she even have to bring that up?

So Jed starts therapy this Monday....woo hoo! I am excited to see what happens over the next few months. And I would be lying if I didn't say I am also a little nervous. Not overly worried or freaked out or anything like that, but a bit nervous. I really hadn't thrown in the prospect of Jed not being able to communicate verbally before. I kind of like having a plan and knowing what to expect. We have a plan, but we don't know what to expect. Time will tell. Now here's the thing. It drives my hubby crazy that I can wait very patiently to open Christmas gifts on time and not before Christmas. I also can wait patiently when I am pregnant to find out the gender of our child at it's birth and not before hand. But I am not feeling very patient with this at all. I kind of feel like we've been living in the unknown with Jed for a couple of years now. Granted we have been blessed to finally know what 'ails' him. But the very nature of his 'ails'...being neurological... make it unpredictable as to how soon or what course he will take. And I want to know now what to expect for him, for his future. But alas the Lord's grace is sufficient for the day, each and every day. I need to enjoy Jed, to work hard with him on the road to verbal communication, and let the results be what they will be.

It is late here and I need to get to bed. I am a bit worn out from the emotional stress of the day. Not to mention a needy baby thrown into the mix. He kept wanting to nurse all day...not a good sign. Could just be teething.......I am hoping it is only teething! Not to mention that it is very evident that we NEED to go back to eating mostly veggie like we were some 10 months ago. (Think lots of children complaining of tummy aches day in day out, multiple times a day...it makes one weary. And it is due to our diet, milk in particular.) We fell off that wagon long ago and we are truly reaping the consequences in many, many ways. But that will need to be addressed in another post for another day. My pillow is calling my name :-)