Wishes

Today one of Spencer's teachers told me another parent said they felt that Spencer got special treatment because of his disability.  They went on to say, "I wish my kid was disabled so they could get special treatment too."

No they don't.  While I love Spencer and who is he, the worst part is everything he has to go through.  Based on that, I would kill to make him typical.  I don't dwell on it, but I often think of how he would be different if he didn't have Ohdo Syndrome.  What would he say?  What would he be eating?  Would he know how to read yet?  Would he want to play t-ball?  How dirty would he get after playing outside?  I don't get mopey or depressed about it, but how would our lives be different?

I think why it bothers me so much is because they don't know how hard it is to care for someone with special needs.  They only see what's right in front of them, which seems like a happy kid.  To get Spencer to the place he is at now has taken years.  Years of therapy, nearly 30 surgeries, trial and error, research, worrying, and sleepless nights.  They haven't had to hold their kid down so they don't hurt themselves until the pain meds kick in.  They haven't had to feed their child every meal for 4 years.  Their kid doesn't spend 5 hours a week in therapy.  They don't have to drive three hours one way to make sure their child has good healthcare.  They don't have to give their kid a bath first thing in the morning so they'll pee and not pee through their diaper at school, because that's how long it take Spencer's bladder to wake up most days.  They don't have to deal with the wonderful world of orthotics- their kid can wear whatever shoes they want.  They don't have to deal with sensory issues and dealing with the meltdown caused by something as simple as cutting his fingernails.  They don't deal with the constant doctor appointments.

Most of all, they can say they wish their child was disabled.