Tuesday, April 21, 2009


The EI coordinator called me today. She said "Hi Mrs.Johnson. I was calling to let you know that your therapists will not be coming out to see J this week."

You don't say?!?! They come on Mondays. Today is Tuesday. Even if they didn't call me, I think I'd have figured it out by now! I didn't tell her that though...hehehe. Just thought it! I told her that I spoke with his therapists and they explained the lack of funds issue. She then asked me if I had thought of any alternative routes for J temporarily. I asked her if there were any non contracted therapists through First Steps that would be willing to see J, but she said not at the moment. Unfortunately we cannot afford to pay out of pocket for the sevrices, and I have no idea why they are so dang expensive in the first place?!?! So no. I have no alternative. The good news (I guess??) is that they will pick him back up in July once they get their yearly funds. I asked her if she was certain that J would be picked back up and she assured me that he would be since he was already actively receiving services. So he'll miss 2 months of therapy. I am going to do what I can to keep him on track, but I'm really worried about the occupational therapy. It's just extremely hard for him and he was finally started to respond to the sessions. Now I know he will regress and it will be hard to get him back on track. Everyone is suggesting that I just do what the therapist does, but trust me when I tell you it is not that easy. The main reason is b/c any child will work better with someone other than their parents. It sounds crazy but it's true. It happens all the time with my photography business. Parents tell me that their children HATE to take pictures, but I never have a problem getting great pictures of their kids and most parents leave the sessions saying "Wow s/he NEVER did that for me!!" Well, I'm a new person who only comes around once in a while, so it's intruguing to them. Same thing with J and the therapists. He knows them, but they only come once a week so it's almost like a treat to them and he doesn't mind spending 45 minutes with them. The other reason I know I cannot completely take over OT is b/c it's so rough for him and rough for me to watch him. Occupational therapy generally helps him with things that he normally should have no problems doing daily. She's helping him to be able to successfully perform his occupation, which right now is to be a child...laugh, play, learn, grow up...But it's hard for him since he's dealing with the sensory issue. He extremely turned off by different textures, he hates to wear clothing with tags, he doesn't eat, he can't sit still, he bangs his head when he's frustrated (although his diet change has decreased that tremendously), he falls ALOT, among other things. But she helps him to deal with these things. She started off working with his feeding issues. He went CRAZY!!! It was traumatizing for him and it made me cry to watch him go through that. I planned to ask the therapist to hold off on feeding therapy for a while, but she decided to stop on her own b/c it was just too much, so that's definitely something I'm not willing to do on my own. For the past few weeks she's been working on him with different textures. One that repulses him the most is dry oatmeal. He cries and gags when he has to touch it and usually gets up and runs to my lap for comfort. I NEVER want to be the person on the other side of the table who is making him do something that he doesn't like. I know it will help hima nd it's what he needs, but I'm his mother so I want to remain the person he can run to for comfort. So taking over OT sessions is not going to be an easy task.

I do, however, plan to continue doing sensory exercises with him. Those should keep him close to where he needs to be once the OT comes back. I ordered him a weighted vest which is simply a vest that I can add weights to. The extra weight give him added pressure since he is a "sensory seeker". It also helps his balance and could help with muscle tone, but that's not one of his issues. He hates to wear it b/c it makes him fall alot, but when he learns to not fall then that's helping his balance. I also got him a chewy tube, which is basically a rubber teething toy shaped like a T. When I gave it to him, he immediately started chewing on it. The tube stimulates his oral muscles and help him to develop oral motor skills, so hopefully he won't have any problems chewing adult food once he starts eating more. Also, the chewy tube can work muscles that will help develop his speech more. I often find him watching TV and chewing away on the tube. I may have to carry it along when we go to noisy places b/c when he gets nervous he chews on his shirt (or my arm!!) so I wonder if the chewy tube would help to calm him. Other things I can do can easily be masked as games, like ring around the rosey, jumping up and down, hand walking, etc. Anything to get the senses going. All of that will help him with the little issues, but I cannot and will not touch the bigger issues. Hopefully he will hang in there until July.

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