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Finding Out That Our Son Has Cerebral Palsy

Finding Out That Our Son Has Cerebral Palsy

Every superhero has their kryptonite.

This week we made a big change for our son, Sterling.  He wasn't happy at his former preschool for some time and would cry every night when he realized it was a school night.  "Please mommy, I don't want to go to school," he'd say. 

The developmental program at this super expensive LA pre-school was almost non-existent and the kids, including Sterling, were bored.  There were no lesson plans and it's like 'Lord of The Flies' on the playground.  When I met with the director about Sterling she turned the tables on us and said it wasn't the lack of a program, but that some information I had shared with her regarding our little boy was the root of his daily pre-school unhappiness.  

Let's backtrack a minute.  I knew from the time Sterling was 12 months old that his walk looked different.  The pediatrician didn't see it, nor did our parents or best friends.  I asked at every well-visit and even took him to an orthopedist when the pediatrician suggested it was perhaps a tight heel cord.  The orthopedist found nothing with a full-body x-ray and suggested we see a neurologist.  Our pediatrician didn't think it was necessary at the time, so we continued monitoring his walking. 

Sometimes he does a little skip when he's running, and sometimes he holds his left hand in a fist, but it's so subtle.  Finally, at his 3-year-appointment, the pediatrician said it was time to get a second opinion.  She still felt it could still be a tight heel cord, which is important to handle in the toddler years.  Fast forward to our appointment with the top pediatric orthopedist in Los Angeles.  He played with Sterling, noticed how funny and thoughtful our little boy is, watched him run.  Then sat us down and said "your son will lead a normal, healthy life and his wife one day won't even notice.  But Sterling has cerebral palsy". 

However stunned we were by the preliminary diagnosis, part of me knew.  I didn't have the label for it, but I had felt it in my heart since he was little. 

A friend got us in at Children's Hospital with a leading pediatric neurologist and she confirmed the diagnosis, agreeing with the orthopedist that Sterling's CP is so mild that he doesn't need therapy, it won't get worse, no MRI necessary.

This all happened right after we had our third baby.  Our emotions were high, and we are still in the process of 'what do we share with him'.  We don't want him to face discrimination.  We want him to embrace himself.  Are we open about it?  Do we ignore it?  Do we call it CP?  Do we call it a 'left side weakness?'  What do we do?

Back to the present day -- I had confided in his former preschool's director right after we got the diagnosis.  She had never noticed, nor had any of his teachers.  

But when I voiced my concerns about Sterling being bored at school, she turned it around on our son.  "Mandy, I know the doctors said his CP is mild, but I'm seeing it more.  Maybe he can't keep up with the other kids.  Look at the way his clothes hang off his body".

The way his clothes hang off his body?  He's a very tall three-year-old who insists on wearing jeans that he has to pull up himself after he goes to the potty.  They sometimes fall back down a bit and he could care less to pull them back up.  The way his clothes look on his beautiful little body has nothing to do with him crying every day that doesn't like his school.  Or that one of his teachers said he "was a loner" rather than teaching him how to enter play with the girls who wouldn't include him.  

I'm so proud of this picture of him at his new school, in gym class.  This was his first day.  He couldn't have been happier and I know we made the right decision changing his school.  

Sterling needed more - more structure, more learning, more nurturing.

And you know what we told him?  Every superhero has a weakness -- their Kryptonite if you will.  And his is that he will have to remind himself to use that left side even when it's easier not to.  

Our experience with our Sterling has made us even more grateful for the health of our children.  And to not be afraid to make a change -- even if it's mid-year, mid-way through pre-school.  Because it's made a world of difference in our child's happiness, and in turn, my own.  

Polite As Fudge

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