You know you need awareness when you know more than the “experts.”

By Laura Smith|August 16, 2017|Apraxia, apraxia blog, developmental coordination disorder, dyspraxia, Executive Functioning Skills, global apraxia, Sensory Processing Disorder, special needs, special needs parenting|

About a year ago I switched insurance from my husband’s to mine, in order to leave no stone left unturned.  I know that kids with apraxia can have some sort of positive indicator on a brain MRI, or genetic marker.  I had yet to do any of that testing, and so I decided this was the year to do it.

My husband questioned why.  Is there a reason to know? Will it change anything?  Well, in some very small cases, people have discovered things that have been helped, but most likely the results would not yield anything.  My husband again questioned why.  Would it change the treatment plan?  Therapy plan?  Long term prognosis?

“Probably not,” was my reply, but honestly, I just had to make sure.  I have to look in her eyes every morning and every night as she struggles through every daily living task and educational task. I have to pray most days to check my patience because many things she does is not her fault.  So yeah, I also have to be able to look at myself  reflected in her adult eyes someday and tell her with complete honesty,

“Ashlynn, I did everything I knew in my power to do, to help you.”

I have to be able to say that.  Yes it cost thousands of dollars and I’m on a payment plan for those medical bills now, but it’s worth it.  Everything came back negative and it’s STILL worth it.

I’m not here to cry and moan though.  If you have a child with apraxia you are just as much in the hole as me.  No martyrdom here.  What I DO want to talk about though, is neurology.

I went to the Children’s Hospital of Denver.  Well respected, popular hospital.  I took her to neurology and the first appointment went exactly as expected.  Exam and then orders for an MRI and genetic testing.  Pretty standard with Ashlynn’s presentation.  We only found out our neurologist was a resident when the supervising doc came in for a review.  Nice.  I guess it’s no big deal, but it would have been nice to know our appointment was with a resident. Maybe that’s not common, I don’t know.

The second visit was a follow up visit.  I already knew the MRI and genetic testing didn’t yield anything remarkable.  I was there to see what their dx would be.  Our resident neurologist did her exam and then a different supervisor came in. She did a few things with Ashlynn, and then, as though I wasn’t even in the room she proceeded to tell the resident that “she doesn’t have apraxia” among other things.

I think I sat in my chair in the twilight zone for a minute.  My head shifted back and forth between the two as I struggled to process what had actually been said.  Did that woman just say Ashlynn doesn’t have APRAXIA???

“Um…wait.  Yeah, I’m sorry.  Did you just say she doesn’t have apraxia or oral apraxia?  Ask her to close her eyes on command.  She can’t.  Ask her to spit out some water…she can’t. Ask her to smile on demand, she can’t.  Oh, and if you don’t hear her speech apraxia, I am more than able to take you through a motor speech exam quickly.”

The supervisor did many of the non-speech things I recommended.  She saw, as I said, Ashlynn couldn’t do them.  She then looked at her resident, again as though I wasn’t in the room and commented, “Oh, is this the SLP?”

“Yes, I’m an SLP that specializes in her disorder,” I responded for the resident.  “Would you like me to take you through a motor speech exam?” I reiterated.

She told me that wasn’t necessary and changed the subject to the next course of action.

People.  WTF?

You ALL know just as well as I know that if I WASN’T an SLP, that neurologist would have told the parent ASHLYNN doesn’t have apraxia.

Ashlynn has been in therapy since before 3 and has a mom as an SLP!  She is now almost 8!  My God, I would HOPE she has improved.  WTH is wrong with people??  This is a DOCTOR for CHILDREN’S HOSPITAL NEUROLOGY.

Sigh

This is why I say and will ALWAYS say, you the parent are the expert on your child.  It sucks right now because parents seem to know more about apraxia and dyspraxia than experts.

I have a client who has a son with apraxia and dyspraxia.  Apraxia was officially dx by me, so she asked where she should got to get the dyspraxia dx.  I recommended a neurologist.  She found herself at Children’s Hospital too.  Different neurologist.  She point blank asked if her son had dyspraxia and his answer was,

Do I look like a therapist?

My dear readers, therapists don’t diagnose dyspraxia or developmental coordination disorder!!!  It’s a DOCTOR who does this.

I absolutely hate that we as parents know more than the professionals, but you guys, we do.  I say that AS a professional too. That is why awareness is so important to me, but right now we have to be the experts on our children!

Don’t stop.  Don’t accept any “expert” opinion just because they are an “expert.”   Don’t be afraid to ask questions.  Dig for answers.  Listen to your gut, because you DO know your child better than anyone.

Advocate.

Don’t blindly accept “expert” opinion.  Value your own.  You are a parent and that makes your an expert on your child.

Remember that.

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