Tuesday, August 27, 2013

Buddy Boy's Mountain: Childhood Apraxia of Speech


Around a year and half, when Buddy Boy wasn't talking--or even babbling--AT ALL, I started to get concerned.  Up until then, I'd been assuaged by all the late talker stories people like to share and that internal mother hen voice that says there can't be anything wrong with my child...he's too amazing.  I kept thinking the breakthrough was just around the bend.  One morning, he would wake up and call me Mama, and tell me what he wanted for breakfast.  And then, somewhere along the way--perhaps a few months after the checkup when the pediatrician mentioned that children his age should have at least 15-20 words in their vocabulary, and I realized that he still made not a single consonant noise--that mother hen voice wisened up and said yes, he is indeed amazing and yes, there is indeed something wrong.


A couple months later, we began what turned out to be a very long process of evaluations, insurance reviews, and therapy waiting lists, and I had just a very small taste of the great difficulty parents of children with serious health problems go through.  

At 21 months, when he had his first formal evaluation, Buddy Boy used at least fifty signs, as well as a huge variety of gestures and pantomimes.  He could say Mama, but no other words or consonant sounds.  His expressive speech ability {what he could say} was estimated to be on the level of an 11-month old, and most of that was based on his signing skills.  However, his receptive speech ability {what he could understand} was estimated to be on the level of a child of 3 years and 7 months.  So, his output skills were at a level half his age, while his intake skills were at a level twice his age.  You can imagine how frustrating a situation that must be, to understand so very much and yet be able to express so very little.  

The age equivalency findings were illuminating for us, but the most important thing to come out of that evaluation was a diagnosis of moderate to severe childhood apraxia of speech.  I had never heard of apraxia, and most people I have talked to about Buddy Boy's diagnosis haven't either.  It is an oral motor disorder, where the brain and the mouth have trouble connecting.  Buddy Boy knows exactly what he wants to say and even how to say it, but his brain fails to get his mouth to move in the right way to make the necessary sounds.

After long waiting lists for speech therapists and much rigamarole with our insurance company and DC health services, who denied coverage because of Buddy Boy's far above average cognition {good problem to have, I know}, we finally started about four months ago with a wonderful speech therapist who uses PROMPT technique and whom we are blessed to be able to pay out of pocket.


What apraxia has meant for Buddy Boy, as he has gotten older and his speech skills have developed, is that

1. a lot of consonant sounds are still missing from his speech,
     {for example: Close your eyes is O oo eye; water is ah-eh; May I please have some? is Ay I ee ah um?; car is ah}

2. he adds in filler sounds and pauses to help him pronounce certain sounds,
     {for example: Daddy is Dada-y; Mommy is Mama-y; no used to be no-uh, but he's conquered that one--yay!}

3. his vowel sounds are sometimes imprecise, and more difficult consonant sounds are often replaced with easier ones,
     {for example: Julia is Ee-yah; where is ee; back is bat; duckie is guttie; want is nant}

4. some multi-syllabic words are just really far off the mark
     {for example: Andrew is Mmm-ah;  Band-Aid is ninid}

5. he has a hard time with volume control...sometimes he's inappropriately loud in his speech {what 3 year old isn't, though?} and other times he is too quiet, especially with certain voiced consonant sounds, where he can only make the unvoiced equivalent,

6. he has his own jargon, that I think comes from his realization that he can say some words better than others and therefore has more likelihood of being understood when he uses these, but also perhaps from some of the word confusion that is a symptom of apraxia and of course, from being three, as well,
     {for example: everybody is allbah-y (allbody); nobody is nonebah-y (nonebody); who is oobah-y (whobody); fast is at-ly (fastly); horse is gi-y-up (giddyup)}

7. and he sometimes favors the left side of his mouth for sound production, especially when he is thinking deeply as he's speaking...his lip curls up like Elvis when he is really deliberating, and he is pretty darn cute at that moment.


As you might imagine, his speech is largely unintelligible to people who are unfamiliar with it.  There are phrases and words that he says perfectly {go, me, I, do, ball, map, mat, and many more}, but when he is conversing in long paragraphs, a lot of what comes out is strings of vowels and pauses.  Little Guy understands practically everything he says, I am right behind Little Guy, and the Mister is right behind me.  

When I am talking with him, I am SO tuned into him, watching his mouth, thinking about context clues, trying my very, very best to understand what he says to me the very first time he says it, because grrr...how awful to have to repeat oneself all the time.  But even so, there are those times that I try and try to understand what he's saying, but just can't.  These days, after a few attempts at getting me to understand him, he refuses to try again and just tucks his chin into his chest and closes his eyes.  Those are the really bad moments that send me flying through a list of possible words, racking my brain for what he could be trying to tell me, all the while with a pit in my stomach over his evident despair.  

The very worst moment came on a visit to Alabama, when Buddy Boy came out to the kitchen from a trip to the potty, wearing a long shirt.  He kept telling me, "Me nant um uh-eh-eh" and while I knew he wanted something, I couldn't figure out the uh-eh-eh.  He tried and tried and it wasn't until he was in a crying ball on my lap that I realized he was missing his underwear.  So basic, so simple, and a total failure to communicate.

It's that kind of thing that scares me, because he doesn't have to have strangers understand the complicated thoughts I so love hearing come out of him, but there will come a time when he will need them to understand his expression of a basic need.  Like, in a couple weeks, when he starts preschool.


This video highlights a lot of what I worry most about for Buddy Boy, and watching it was really the first time that I realized what a journey Buddy Boy has ahead of him.  Previously, I had assumed that apraxia would be a little bump in his preschool years, resolved quickly.  Sparked by that video and a hundred other Google nights, and confirmed by conversations with his speech therapist, I now realize that apraxia is Buddy Boy's first mountain in life, one he's going to be climbing for at least the next few years.  I have hope that his apraxia will be completely resolved in early childhood, and his therapist says she has seen cases as severe as Buddy Boy's be resolved by age six, so that hope is reasonable.  I also have great fears, but I am trying to give those up to the Lord.
I intend to be Buddy Boy's most loyal and devoted Sherpa as he climbs this Everest of apraxia.  And when we get to the top, I don't know what we'll shout, but it will be something everyone can understand.

12 comments:

BettieBoyd said...

XXXOOO

BettieBoyd said...

XXXOOO

Anika said...

This post brought tears to me eyes. I cannot imagine how hard it must be for JF to know SO MUCH but not be able to be understood. I'm hoping and praying that therapy works wonders. And best of luck to JF on starting preschool!

Golden Gate Fam said...

Prayers for JF as he climbs this mountain!

Wanting What I Have said...

Oh Elizabeth...wow! Thank you for putting your heart out there and for sharing. My mama heart aches for you and also cheers for you! How awesome to see you and the Mister rise to this occasion and battle for your son and alongside him. What precious and wonderful parents he has. I have a friend whose son has apraxia. It has been an eye opening experience to walk beside them through it. Their son has made tremendous strides! Y'all hang in there. I am praying for you. And for JF. He couldn't have better soldiers fighting with and for him. I cannot wait to hear y'all scream from the top of Everest!!! Love you.

Aunt Betty said...

As you know I went down a similar path with your cousin, so i understand your worry. Does his teacher understand signing? If not will they allow him to have que cards until they are all fimilar with each other and he with the school? If so my suggestion is that the two of you make some like for bathroom, water, food, sick, hurt etc. Then the important things are covered. They could live in his pocket or cubby. Love you all and remember he is a tough smart little boy and he will work it out and come out even better on the other side!

Jessica said...

He is so lucky to have such a strong and dedicated sherpa on his journey. He has already made so much progress with you, the Mister, and LG at his side. You know we are all here to help hold the packs on the way up.

Picks4Precious said...

Thanks for sharing!

Rachel Cagle said...

He will scream from the top-- he will be HEARD from the top. NO matter what.

Laura Ann said...

What an amazing Mommy, Daddy, and older brother he has! I am sure Baby Girl is helpful too. Praying for y'all and cannot wait to hear his shouts of praise!
LAW

Staci said...

I randomly stumbled upon a comment you left on the Nato's blog. I've been an SLP for about 12 years- specializing in apraxia for about 4 of those years. In your comment you mentioned Nanci Kaufman, and personally, I think she is phenomenal! There isn't anything "magic" about the products, words, etc, but over the years, the strategies I've learned (beginning with Nanci's trainings) have been the most effective in working with my kiddos that have apraxia. She does have parent training DVDs, intensive 2 week "camps" where children and families go directly to her center, and video consultations. I would thoroughly endorse the Kaufman Center as well as SLPs who understand the fundamentals of those therapy techniques. So, there's your unsolicited advice from a total stranger. Best wishes to your little buddy! It sounds that he has a great support in you.

Staci

Jamie Helms said...

Oh how I love you, E. Buddy Boy is an INCREDIBLE, highly intelligent little one that will shock us ALL in his quest for the top of this mountain! Sending each of you my love...