More PT frustration

I haven't had time to post about this with Brian leaving for the funeral, Will's birthday and the rest of the general nuttiness. This week we had a very interesting (for lack of better term) PT session. We really like our (relatively) new PT Maureen. She obviously knows her stuff and has really honed in on what issues plague Abby the most. Her general lack of balance, equilibrium and center of gravity issues, eye movement issues, trouble with bi-lateral body movements, lack of protective reactions and a few other more detailed issues. We have spent the past couple of months working on training her brain to protect her body when she falls (put out her hands, blink, etc.) but she has shown very little progress. Her balance is no better and we have made very little progress on the other issues. Thank God that Maureen is unwilling to throw in the towel and say she gives up (I am truly thankful for that).

We sat down this week, in lieu of doing any real therapy, to talk about where we are at. Basically it is time, because the girls age out of EI in June, to start trying to tease apart those things that will improve with time and what things won't. For the things that won't we need to start coming up with adaptive alternatives for her. Let me tell you, this was not an easy conversation to have. It makes me sad. It makes me so sad to know that she will not be "normal". That her life will be more challenging. When Maureen talked about some day, when she is in high school that she will likely not be able to use the stairs with her classmates or navigate the halls when they are crowded. That doesn't sound like a big deal BUT imagine being 14, insecure, having to take the elevator when no one else but kids on crutches or in wheelchairs are allowed. Do you know how stigmatizing that will feel for her.

It makes me sad that I am going to have to fight the school district next year to get her a one-on-one aid to help her navigate her pre-school so she doesn't get hurt? I always knew this day would come. I knew that some of these "issues" would never go away. And here we are. Having to sit down and take a long look at all the work we have done over two and a half years and basically stop working on some of this. This isn't who we are. We don't quit. We don't take no for an answer. Never have, never will. But now we have to start picking and choosing what "battles" we fight. What issues we tackle. I hate this gray area. It used to be so black and white. Get Abby to roll over. Get Abby to sit up. Get abby to crawl. Get abby to stand. Get Abby to walk. We did it all. We had clear purpose, we had strategies from our therapists, we succeeded... at every damn thing. But now no one has a clear idea of what the heck is going on. What she will be able to do or not do. What is going to help. What the goals should be. I feel so lost in this respect. It is so helpless to know she needs help but have no idea what to do for her.

I thought PT was hard six months ago. Pushing her to do her exercises. I had no idea how hard it really could be.