The Hard Part About Special Needs Parenting

My girl.  She’s almost 7.  She’s almost in second grade.  She’s in a regular first grade class.  She can sight read with the best of ’em.  She can count super high.  She can dance and sing and play.  She knows everyone’s name.  She has friends.  She has ALL THE FRIENDS.  She has 47 chromosomes.


My girl, she’s 6.  She’s in first grade.  She doesn’t understand much, if anything, of what she reads.  If I’m being generous, her academic skills are more on par with those about to enter first grade as opposed to those completing it.  She has trouble with fine and gross motor skills.  She can’t really jump rope but she’s working on it.  She’ll get it.  She’s got her mother’s drive to get shit done.

* * *
Once upon a time, I had a baby.  They put her in my arms and said congratulations. I thought she looked a little funny. They swept her away quickly.  Long story short, the doctor came in and told me she had Down syndrome.

My first thought – my very first thought – was “oh God I don’t have the energy to fight the school system for 20 years.  I don’t know what I’m doing.  I did not sign up for this.”

* * *
Nearly seven years later…

Still having that thought.

Today, I’m at a cross roads in that very journey, torn between making a school decision that goes one way in my head and the other way in my heart.  A weird place for this total Myers-Briggs “T” who makes decisions using her brain and only her brain.

I don’t know who has my girl’s best interests at heart, I don’t know who to trust, and I don’t know what to do.  If I’m being honest, I don’t like either of the options I’m faced with.


My brain thinks it’s made a decision… and then I look over at my girl, playing on the floor with her babies, dressed up as a princess, her hair half falling out of her ponytail, hands stained from painting with all the colors at after-school… and my heart kicks in.  Back at square one.

This happens several times a day.

When people say “I could never do what you do” in reference to my girl, I always say “Yes you could. You do what you need to do for your kid, no matter what. You just do.”

This may be the first time I don’t actually believe it.

One thought on “The Hard Part About Special Needs Parenting

  1. Melissa this is heart breaking. I really believe that whatever choice you make, it WILL be the right thing for her. Thank you for sharing these hard parts with us.


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