Today was Joshua's IFSP meeting his infamous PT actually attended. Well of course she did more than attend, she had him in his stander and then in the walker she lets us borrow. I went through all the same emotions I had almost a year ago at his evaluation and decided that rather than cry about it I could send her an e-mail and let her know how I feel. So I did just that and here it is.
First I want to say I really do appreciate all you have done for and with Joshua but you have to know that not every single one of the suggestions or recommendations you make are possible especially all the time and for the amount of time you want them to be done. I am his mother and I have to live with him and all of your suggestions. Just today I was brought back to the feelings I had when I took him to his physical therapy evaluation almost a year ago and it was very painful for me. I do not think he will like having a pressure suit at all, we have tried it with him and it has made no difference in fact he was worse during OT when it was done. I will try but I make no promises. The same goes for the stander. Of course I want him to walk and to improve but at what cost to me and him? His entire day cannot be therapy, he has to be allowed the same things that other children are allowed, free play time. I understand that you are concerned with his growth and development and appreciate it and of course so am I. Right now he loves speech therapy, it is the one therapy where he is allowed to just play and I will not ruin that for him. If he does not like being in the stander during that therapy and it becomes where he no longer enjoys it then I will not continue it. He has made improvements there and I want that to continue. It is just as important to me that he make improvements in speech as it is in other therapies. So I will try your suggestions and recommendations but in the end I will choose what is best for me and my son, I have to be able to sleep at night and not be miserable and I am right now going through the same emotions I had when he was first evaluated. I do not need to be reminded that he has a long road, of course I know that, but I don't need reminders. I also don't need to know that you thought he would have graduated by now and he hasn't, that hurts and I do not need to know that. I also am not ready to contact other families dealing with the same diagnosis as Joshua. If and when I am ready I will do it on my own. If you want more information about his diagnosis I suggest googling it but it was suggested to me by the genetic counselor that I not do that as it tends to be negative and I do not need any more negativity in my life. Also all children are different and I do not think that just because one child with the same diagnosis did something at one time does not mean Joshua will do the same. I am sorry but I think I have to tell you how I feel as I have to live with myself and Joshua and the suggestions and recommendations you make. I want him to enjoy being at preschool as well and do not think he would like being in his stander. He does pull up all the time and even stands alone for up to 20 seconds at time. You may not have seen him do that but he does it ALL THE TIME at home and even at preschool. Maybe that's not good enough for you but I have to celebrate the things he does and how far he has come and I think those are wonderful.
She came back by the house to install a piece on Joshua's walker and said it was great that he was standing for 20 seconds but that in 12 months (it's only been 10) he's only made 4 months of progress and I said that's better than none and she said if it wasn't for intense therapy he wouldn't have. Who does she think she is? She knows that it's 100% therapy that's gotten him to this point? No one knows that! She brought back by his shoes that go over his AFOs which have gotten too small for him for him to just wear the shoes without the inserts but if he can pull his feet out of smaller shoes that are his size how does she think these will stay on his feet when they're a size bigger? She said all we can do is try and they're just recommendations. Well they sure seem like more than that when she says them!