The lady from First Steps, Kate, came tonight to do a physical therapy evaluation on Z. She did lots of tests and it made me aware of how delayed he is in gross motor skills. Fine motor might be a bit behind as well.
After her assesment she said he definetely has low muscle tone (that is an NS symptom/characteristic/side effect) and she said he was really working hard to use his upper body muscles. She also said she thinks he has some sensory issues. Since this was just the initial evaluation, I have to wait for her to contact our "case worker" and then we will work out a plan for him. I didn't ask but I assumed this meant that he qualified for PT under the MO First steps Program. I think they will then determine what the insurance will cover and what our costs will be. We should hear from her in a few days.
I am just always amazed by the different things these "experts" show me. She gave us lots of exercises to do. She showed me how Z won't even twist at the waist to reach for something on his side, he just uses his arms.
Even though I expected this and deep down (not even that deep down) I knew Z was really delayed, it still left me a little sad to hear an expert say he did have low muscle tone and was delayed. I don't understand why it upset me and broke my heart for him, yet again. If this is the worst thing he has to deal with, the worst complication of his NS, he is not that bad off. I just look at my teeny tiny little boy and don't want him to go through any more than he already has. It isn't fair. Z doesn't know he is delayed, he is happy and silly, just like a baby should be. If it doesn't bother him then why should it bother me?
It's okay because I am going to get him all the help he needs to be the best he can be...he deserves that and so much more.
2 comments:
I hear you honey. Z is happy and silly and doesn't know any different from what and who he is. That said, you're absolutely doing the right thing to fight for the services and then run with it. He's a smart kid. He'll pick it up so quickly and the confidence he'll show will fuel him on to more and more things.
Hang in there! We do all we can because we love them...
BTDT. It is tough to hear anything not "normal" when it comes to our children. You are doing the best thing you can for him and with help, he could very well catch up! My DS entered the IL Early Intervention program (same as what you have only in IL) at 19 months because of delays in gross and fine motor, and speech. 5 years later we are still getting therapy and help from school (and privately).
My heart breaks, too, but I find comfort in seeing progress and knowing I am doing whatever I can for my DS.
With the Early Intervention program in IL, our fee was based on household income. It was a flat monthly fee regardless of how much therapy we received. The more therapy, the better since you pay the same price.
If you have any questions about the early program, you can email me. While each state is slightly different, this is a Federally mandated and funded program.
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