Wednesday, May 14, 2014

Speech Apraxia, Our story

Today is National Apraxia Awareness Day.  Have you heard of Apraxia?  The term was entirely new to me when my son Nick was diagnosed 8 years ago.  Back then, it was quite rare and the only resources available were related to autism. 

Apraxia of speech: A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands. Children with apraxia can be helped significantly with intensive speech therapy.-Medterms.com.


10 Signs of Apraxia
1.  Struggling to get words out
2. Underdeveloped muscle tone.  Drooling as a toddler, feeding issues, etc.
3. Small and gross motor delays
4. Social avoidance
5.  Clearly understands language but can't use it
6.  Displays greater speaking difficulty when nervous or anxious
7.  Sensory issues (hates loud noises, can't stand hair cuts, wears the same shirt every day)
8.  Hyperactivity related to sensory issues
9.  Seems to speak his or her own language
10.  Reading, spelling, and writing difficulties


 
Nick was an adorable, healthy 9 lb 4 oz baby that was always happy.  He came into this world just as my mother left... but that's a story for another time.  Nick had a normal birth history without complications and everything seemed to be going along very well.  At about 14 months, I walked into Nick's room one morning, flipped the light on and something felt different.  I couldn't quite put my finger on it but Nick seemed different... more reserved and not as easy going.

We'd go to playgroups and other baby/ toddler activities.  He'd play well with other kids but he wasn't talking like they were.  He wouldn't make eye contact and his motor skills seemed behind.  Well meaning moms would ask if I had heard about Autism.  They'd tell me about articles they'd read, they'd point out the milestones that their children were achieving and raise an eyebrow as if to say, "Do you realize your kid is different?"   
YES!  I realized and YES, I was terrified.

Having quit my job early on in my pregnancy, I found myself isolated and trying to find other stay at home mommy friends.  My mom had passed and very few of my friends were mothers.  Nick and I would drive many miles to meet moms and other kids but still... we just didn't fit in.

We put Nick into speech therapy at about 15 months.  We saw small improvements but we were still so far away from where we should be.  I was having lunch with a former co-worker one day when she hit the nail on the head.  She said, "Lisa, it's like he knows what he wants to say but can't get his mouth to form the words.  I know he understands you and wants to talk."

I've been known to create a disease or two after spending hours on google.  I'm sure my friends and family thought I had created a new disease when I told them I suspected Nick had apraxia.  I emailed the speech therapist to see what she thought.  She wasn't sure because Nick was so young.  We continued with therapy and wondered in the back of our minds if we were dealing with Apraxia or Autism or both... we seem to be straight A's when it comes to disorders.  Asthma, ADD, Arthritis, Apraxia.  After being asked time and time again be friends, strangers and even my daughter's pediatrician about a possible autism diagnosis, we consulted a neurologist.  She spent an hour with Nick, turned to me and said, "Nick does not have Autism.  He has a severe speech disorder called Apraxia which also impacts his gross and fine motor abilities."

I burst into tears.  The tears were tears of relief.  We finally had a diagnosis that was treatable.  Nick would get better.

The neurologist connected us with a social worker who got the ball rolling for speech, OT, special schooling, book lists, you name it!  The next few years we exposed Nick to every extra curricular and social experience we could find.  Of course Nick didn't want to make eye contact!  If he did, he'd be expected to speak.  We did it all!  Two preschools at once, gymboree, little gym, gymnastics, golf, soccer, t-ball, swimming, social groups, speech, OT, vision therapy, the list goes on.  We read every book we could get our hands on.  When one speech therapist would tell us Nick had progressed as far as he could, we'd politely move on to the next therapist.  Public school tried to slap an autism label on Nick even though every therapist and neurologist we saw said he was not on the spectrum.  Nick hated school and ended up in the ER with an anxiety attack because there was so much focus on what was wrong with him instead of what was right.  Our son is brilliant... seriously.  We pulled him out and put him in private school.  When that private school stopped working, we put him in another.

My shower became my crying closet.  I'd worry if Nick would ever speak a proper sentence.  I worried that maybe we had missed a really scary diagnosis.  Would his social skills ever develop?  Would his motor skills ever catch up?  Would he ever be happy or would he be consistently bullied?  Would I have to home school?  I cried out to God and asked him why He would take my mother and allow Nick to have apraxia.  It just seemed too cruel.  I was brought to my knees in prayer and my Sundays changed from "football and pajama day" to church... and then football and pajama day.  I started studying the Bible and found community with the women I studied with.  We began volunteering for a ministry outreach, Young Life, and found support from loving and caring friends.  Nick started to get better.  He'd make huge jumps and then plateau for a while.  

Nick was 8 and I found myself standing on the playground, talking to a new friend as we watched our kids run around and have fun.  I told her about the challenges Nick had experienced and she said, "Are you serious?  I never would have known!"  That's when it hit me.  Nick beat apraxia! I joke now that we prayed too much because the kid never stops talking. 

Nick is 10 now and doing wonderfully.  He has straight A's in school... the right kind of A's, has several close friends and he's very happy.  We occasionally deal with stuttering but that too shall pass. He writes as well as a ten-year-old boy can, reads at an 8th grade reading level, plays basketball and soccer and is insanely good at the hula hoop.

I share our story and our journey with you in hopes that someone might find inspiration for their own difficult road.  Early intervention was key for our son but it's never too late to get help!  

Websites:

Facebook
Apraxia Mom
Apraxia Kids- Every Child Deserves a Voice
 
This journey has been incredibly difficult.  As much as I hate apraxia, it has blessed our family in ways we never would have experienced.  The tribe of people that support us is a miracle.  Therapists, friends, other special needs families, the list goes on.  I've lost a lot of friends along the way that didn't understand why I didn't have extra time.  I've angered more than one teacher, principal or school board member.  I'm pretty sure I'm on a few government lists for the phone calls and letters I've written demanding more resources for public education and special ed.  I've been called a barracuda mom, momma bear and a few other things that I can't share here.  It has been worth it!  Advocate for your children because nobody else will!