November 13, 2009

the system

A few weeks ago I attended a Down syndrome convention.  I met some really great people and received some fantastic information.  Perhaps too much information.  It seems like every time I learn something new, it makes my job as a mom harder.

My buddy is in the Birth to 3 system that offers early intervention for children with special needs.  We do physical therapy, occupational therapy, speech therapy, and have a teacher.  I’m sure monkey bear thinks that every baby gets people traipsing in and out of the house doing “exercises” with them.  It’s a lot of different therapies and I learned that it may not be enough.

Right now in between appointments, I become the physical therapist etc.  I have to work with him every day so that he can progress through his milestones at a faster pace.  If he was left to his own devices, my buddy would hit each milestone, just at a much, much slower rate.

I learned that in other states he would be receiving over 20 hours a month  of services while we were receiving 5 hours.  I had a meeting and bumped the hours up to7.  I really want to do what is best for him, but do I really want to fight and buck the system just to have someone in my house interrupting my schedule for 20 hours a month?  And is that really what is best?

How am I supposed to advocate for him and fight for what he needs when I don’t really know what his needs are?  I am not ready for a lifetime of dealing with the “system” and pretending I know what will prepare him for life better than everyone else.  I just wanted a family, not a cause.

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