Neurology, delays, a dream, and a miracle.

By Laura Smith|January 29, 2017|Apraxia, apraxia blog, Childhood Apraxia of Speech, developmental coordination disorder, dyspraxia, special needs parenting|0 comments

Most parents of kids who have a child with global apraxia will at some point visit the neurologist.  It’s usually before the age of 7, which is the age Ashlynn is today.

I remember the referral, although the dates are a little fuzzy.  We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens.  Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard.  Really hard.

Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it.  The pediatrician, knowing I was in the profession tread lightly.  The result though was a possible referral to the neurologist.

I declined.

So curious to me now.  Why did I decline?  Why wouldn’t I have at least gone to the appointment?  The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit.  I pounced on the cop out and religiously massaged her calves every night.  By the time of her next visit, her heel cords were looser and she could flex her foot.  I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral.  Of course I said no.  I could help her.  I could do this.  I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t.  We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.

Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist.  I actually would have went sooner, but our insurance sucks!  I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do.  We have her in all the right therapies, I would wait when maybe my insurance would get better.  This past year I switched the kids to my insurance plan.  It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.

Ashlynn’s “ballerina toes”

The appointment itself was good.  She took our case history, and did an exam on Ashlynn.  She was a lovely
person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues.  I was so proud.  I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress.    I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.

She was a resident, so she went to get her supervisor for the final conclusions and recommendations.  The supervisor came in and examined everything she missed.  I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate).  She didn’t say this aloud, but I knew as an SLP that was what she was examining.  They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing.  I nodded my head.  It’s what I was expecting.  I know many, many kids now in the apraxia world and this is the next step.  We want to see if there is an actual cause we can pinpoint for all the motor planning issues.

Then, this.

“We would classify her at this point as a developmental delay (insert loss of breath.  Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”

I just stared back at them.  I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level?  They heard her talk, ok.  They have my case history, ok.  I wouldn’t put her at a 4 year old level based on that.

“Does that sound about right?”

I kept staring.  Her dressing skills.  They asked me in detail about her personal care, adaptive skills we call them, and, oh yes.  Yes.  She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….

“Ms. Smith?  Does that sound about right?”

I nodded my head.  I couldn’t get any words out.  It felt cruel.  It’s not their fault, it is just the way these appointments are.  I thought of Ashlynn’s four year old brother on the way out.  He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.

I looked over at Ashlynn holding my head walking out of the hospital.  She was smiling holding my hand, and holding a notebook and pens in the other hand.  Always working that girl.  ALWAYS.  During the appointment she “took notes” for the doctor and gave them to her at the end.  The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level.  Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude.  I wanted to cry, but I won’t.  That’s not to say I’m against crying.  It’s just to say it’s not how I want to process it all.  I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.

I turned on “The Fighter” by Gym Class Heroes.

“Just waking up in the morning
And the be well
Quite honest with ya,
I ain’t really sleep well
Ya ever feel like your train of thought’s been derailed?
That’s when you press on Lee nails
Half the population’s just waitin’ to see me fail
Yeah right, you’re better off trying to freeze hell
Some of us do it for the females
And others do it for the retails

But I do it for the kids, life through the tower head on
Every time you fall it’s only making your chin strong
And I be in the corner like mick, baby, til the end
Or when you hear this song from that big lady”
One last thought.  My dad has never been a dreamer and he certainly did not encourage us to dream.  He encouraged us to work, stay out of debt, and have a plan B.  He’s a practical man.  I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out.  Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life.   That’s why it was surprising the other day when my mom called me and said,
“Dad wants to know if you know what Ashlynn’s name means?”  Seems like something I would know.  I didn’t know though.
“No, what?”
“To Dream,” she responded.
We both paused.
“Wow” I managed.  “Dad told you to tell me that?”
“Yes.”
I was silent.  Honestly it was hard to process.
“He told me the other day too, Laura, he believes Ashlynn will be a miracle.”
Silence.
“Wow” I managed again.
So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”
So work baby girl, and I’ll work alongside you;  but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.

My dad with four of his grandchildren including Ashlynn

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