Living with Cerebral Palsy

I know I don’t talk about this much. It’s difficult, and for the most part, I don’t like my son to be restricted by a diagnosis. I’d rather look at what he can do, rather then what he can’t.

It’s frustrating though. Not knowing where your life with your son is going. Not knowing what the next step will be, what I should be working on with him. Trying to figure out his stages as oppose to “normal” children. It’s a little easier because he’s my first and I really don’t know what to expect (I pretty much stopped reading those milestone books after a few months).

He was denied, again, the high-low base for the kid cart. Yeah, we’ll get the kid cart but it’s hard for me to see what the point of getting it is. It’s been awhile since we had the appointment where we talked about it and all I remember was focusing on the benefits of the high-low base.

He’s getting better with his upper trunk control. He seems to want to “bounce” more. He moves his little butt in the air when he’s on his tummy.

I feel like we could be doing more. Like I could be doing more. I know he has so much more potential and it feels like we’re not tapping into the right spots.

There’s no guidance in situations like these. There’s no handbook. It’s a lonely road, that no one but another mother of a child with special needs understands. I’ve tried and tried to get into local groups around here, but CP is just a minority compared to things like Autism.

There are so many good days. Days where I feel so positive. But there are a few days that trickle in and I just think that this is not fair. This is not fair to my baby.

I’m so proud of him. I love him so much that my heart aches at how much he has to struggle.

He has a little over a year left, before the Early Intervention ends and we’re turned over to the school district to start a new…adventure. This brings about another load of worry and fear.

This Thursday is an evaluation with the therapists. To see where he’s at and where we want to go. I’ve made a detailed list of all the categories we work on and I plan to make specific goals in each category. I’ll get a notebook for the therapists to write down what they did during their session so that everyone is up to date and knows what we’re working on.

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