Why we’ll never stop working

By Laura Smith|April 30, 2015|Apraxia, apraxia blog, Childhood Apraxia of Speech, dyspraxia, global apraxia, special needs, special needs parenting|1 comments

I’ve been down lately.  Really, really down.  It pretty much started at Ashlynn’s re-evaluation meeting and went downhill from there.  For all the work she’s done, for how far she has come, for what she knows in the face of so many challenges,  it was like a slap in the face.

It’s really not anyone’s fault.  It’s just the way it is.  I’m dealing with mixed expressive/receptive language issues now.  I knew this, I did….it’s just seeing those damn numbers.  1st percentile, .5th percentile.  Phew.  Deep breath

There were also awesome numbers.  Articulation is in the average range.  The AVERAGE range!  That’s phenomenal.  Ashlynn is intelligible to perfect strangers in and out of context.  For someone with apraxia of speech, she beat it in 2 years with a TON of therapy, but she overcame it.

Now we’re faced with new deficits.  Word finding, expressive language, grammar, syntax, receptive language, memory, attention, writing.

It was overwhelming.  My husband had tears, and he’s the one who always finds the positives and the “what she can do’s.”

Even her receptive vocabulary test came back just under the average range.  Receptive vocabulary tests have been shown to correlate with IQ tests (even though I didn’t give her an IQ test), and even though I don’t think the test was totally valid since I’m sure her attention played a factor…..

It still made me pause.  For once I started thinking, maybe we don’t have this.  Maybe I am dealing with limitations.  Maybe I am in denial.  Maybe I’m not seeing things because I don’t want to see them.

I would read stories and updates on other blogs and get jealous someone’s child ONLY had apraxia of speech.  CAS is no joke either, but if Ashlynn only had CAS then she would almost be over speech forever!  Sigh.  You know you’re down when you’re jealous of other kids’ disabilities.  That is wrong on so many levels.

I looked everywhere trying to get my positivity back.  I talked to family, to friends going through this journey too, co-workers…nothing helped.  I poured over pinterest looking for inspirational memes and quotes that were going to change my negativity and squash my doubts.  I found nothing.

I scoured the internet looking for success stories for global apraxia.  One I found was on disability now but at least happy she had made it through childhood.  That wasn’t exactly lifting my spirits.

At the same time, I finally read a new research article on Apraxia that’s been in my pile.  The article describes kids with motor planning deficits (kids with apraxia) rely heavily on auditory feedback which was proven when they demonstrated diminished speech articulation in the presence of noise.  Gee, I thought. That’s great these kids found a compensatory strategy to make up for their motor planning deficit, but what happens when you have sensory processing disorder and possibly some receptive language issues that makes that feedback unreliable.  UGH

But then I found it.  My inspiration was sitting right under my nose.

I know this guy who has bipolar disorder.  When I met him he was kind of a hot mess.  He hadn’t gone to college, was partying, and constantly getting fired from his jobs.  Of course, having bipolar disorder is very difficult.  There are daily struggles in his mind I will never know.  The statistics for someone with bipolar disorder are less than impressive: 90% of marriages end in divorce when one person is Bipolar.  Less than 50% of people with bipolar take their meds, and 1 in 5 commit suicide.  Many live on disability.  Many are homeless.  This guy though, he’s been married for 10 years with no sign of stopping.  He’s loyal, faithful, hardworking, finished college AFTER his diagnosis, and stays on his medication.  Who is he?

He’s my husband.  He’s Ashlynn’s dad.  Everything he shouldn’t be doing he’s doing.  Everything he shouldn’t be, he is.  My husband, Ashlynn’s dad, defies statistics.

Then I started thinking, I know this other guy.  He was raised under an extremely physically abusive, alcoholic father.  His parents ultimately divorced.  He was forced to go to war and and live in actual nightmares.  What are the stats on a guy like this?  Well, since he’s the product of divorce, he’s 40% more likely to end up divorced himself.  He’s four times more likely to be an alcoholic.  As a vet, he faces a higher possibility of homelessness.  What did the future hold for this guy?

Well, he’s my dad, father of three. Married for 45 years and happily retired.  He’s healthy and has a drink maybe once a year.  My dad, Ashlynn’s grandfather, defies statistics.

And that’s when I started to realize.  Ashlynn comes from a long line of statistic breakers.  It’s in her blood.

I thought of me.  Had I defied statistics?  Well, neither of my parents went to college, so it would be less likely I would receive a college degree or much less an advanced degree….yet here I am. It was highly unlikely I would have ended up at Duquesne University for an elite group of SLP’s, yet there was I was last summer.  Maybe I do defy statistics.

My dad’s nephew years ago was on the wrong track.  He was in jail, and he didn’t know how to make a life for himself after he got out.  He was lost.  He asked my dad for advice and my dad said “keep working.  All I know is to work.”  Years later that same nephew had kept a job and was raising adopted children.  He was not in jail and will never go back.  He told my dad he always remembered his words to just keep working.

So there it was!  Right under my nose.  We are statistic breakers.  We are hard workers, and Ashlynn is no exception. She always wants to work, do homework, practice writing, ball skills, pedaling, speech, read..you name it.  She attacks it, and I realized, I may not have success stories for her EXACT same situation, but I do have success stories for many other hard or seemingly impossible situations and she will be one too…..if we just keep our head down and

working.

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  1. SHE will be the success story! We are in the middle of making the stories. The battles are hard and horrible but this is a war that we’ll win. No doubt about it.

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