Apraxia: One mom’s story

My 23-month-old son’s speech language pathologist is leaning toward diagnosing him with “apraxia of speech.”  In short, an apraxic kid can be bright in all respects, but when it comes to speech, his brain has difficulty coordinating mouth and speech movements.

I’m in the early stages of learning about apraxia. I asked Michelle Stevens, the coordinator of the Childhood Apraxia of Speech Facebook group, to tell her story. It’s one that I think falls under a ‘best case scenario’ and so is something I cling to in thinking about the future.

Here is her story:

Our second child was a princess. She was beautiful. I had an awesome pregnancy and delivery. No problems whatsoever. She was so happy. She smiled all the time. She breastfed perfectly.

It was not until about 7-months when I noticed that she didn’t do the raspberry sounds that I remembered so greatly from our first born son.

Then I noticed that while she was so alert and engaged with us in all ways, she did not purse her lips together much or babble. She also would stick her tongue out — or it hung out a bit — like it was too big for her mouth.

We now know her tongue was not too big. She had no awareness of her tongue or mouth.

At her 12-month wellness check her pediatrician was not concerned. “Some kids just start late,” they said.

At her 15-month wellness check, I told them she was not saying “dadada” or “mamama” babbling or any words or sounds. Again, they said, “That’s no big deal.”

I was not going to wait until her 24-month wellness check to see.

I called our school system which connected me with an early intervention program in our state, Virginia. Someone came out and tested her.

We found out at 16-months that she had no awareness of her mouth. We then began speech therapy. We also went to a pediatric developmental doctor who diagnosed her with what the speech language pathologist had already told us.

Luckily, Virginia’s early intervention program came to our home and worked with her.

She had normal age appropriate receptive language. You could ask her to point to anything, and she would. Since she never fussed, she did not really need to communicate per say.

My daughter was a happy go lucky kid with no other issues other than some sensory related things ( low sensory…not heightened senses)

I read in a book once a simple test for apraxia. Put a dab of peanut butter on the outside corner of the child’s mouth or some other yummy item. Just a dab of it. The child SHOULD take their tongue and try to lick or reach it. It has to do with their mouth awareness and the connection to the brain.

If they don’t instinctively stick their tongue our or try to get it off their mouth/lip area…then the child **could** have apraxia. I tried the test, and sure enough my daughter did NOT even notice that dab was there on corner of her lip.

My daughter was diagnosed with apraxia at age 2.  She did not talk or move her mouth for any sounds until we started speech therapy.

The receptive knowledge of language is there with an understanding of what is being asked, but expressive words couldn’t get from her brain to her mouth.

At age 3, we started once-a-month private therapy. Our school system has a preschool program for kids with developmental delays and we were let in. This was very helpful. We continued speech therapy up until age 6 when my daughter started full time school. She now receives therapy two times at week for 30 minutes with the school therapist.

At age 6, her apraxia is almost 100% resolved. She has complete awareness of her mouth. She has tested age appropriate for speech and language.

We are just working on the articulation of her words as sometimes she can be hard to understand. She still occasionally leaves off the ending syllable or letter. For example, “house” might sound like “houws” or “houw.”

But for us, that is completely fine because each year it will get better as we “fine tune” her speech.

Things that worked for us:

1. Kaufman cards — I believe these cards [sort of flash cards with words and pictures] are what got her talking.

We did the first set of cards — animal sounds — for practically eight months. And that is all. They are in an order that you move on through once cards are mastered.

It took forever to get through that first set of sounds, but then the others flowed quicker. It is all about teaching the mouth, lips and brain to work together to form letters and sounds to make words.

2. PECS cards — picture exchange communication. [A child uses picture cards to express what he wants.]

Unfortunately for us, these never worked. They are used for autistic children or any child who needs help expressing themselves. I have had friends who used them though and had success.

3. We also did listening therapy while using the cards, which helped the brain focus somehow.

4. PROEFA fish oils — we saw progress with sounds coming faster. There is a lot of statistical data supporting fish oil and speech production. Some of the people I have met and used fish oil had awesome results within weeks increasing to words and 2 word utterances.

Ours were lemon flavored gel caps that we poked a hole in and squeezed onto a spoon. We always gave her a gummy bear afterward.

5. We also had our speech language pathologist do “Prompt” which is a technique for helping the mouth form letters, sounds and words. This is amazing because a lot of apraxic children need their mouths trained. I can attest that this does help.

The key to all our success was starting early, at age 2, but it can still be possible at any age.

I hope my daughter’s journey and story might give you some encouragement. Again, this was what worked for us. I’m just a mommy who is sharing her story…..

Michelle Stevens from VA

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Comments

3 Responses to “Apraxia: One mom’s story”

  1. Wendy says:

    My 2.5 year old son has Apraxia. Not as sever as Michelle’s daughter. He didn’t say his first word until 22 months. He had few babbles and not many sounds. We started speech at 18 months (early intervention program – ohio). He couldnt’ blow a whisle or stick out his tongue or mimic our mouth movements. at 2.2 years he started trying to repeat some of our words and had about 8 spontanous words (some of which were uh oh and whoa though). We intensified the speech focus in the fall, added “Speak” omega 3 suppliments (specifially for Apraxic kids) and have noticed huge improvements. He is very hard to understand but “taking” two – three word sentances. I felt a little overwhelmed when we discovered he had Apraxia, not ever hearing of it, but there is a lot that can be done. It’s a long road. there are support groups too. You are all not alone. :)

    March 1st, 2010 at 6:36 pm

  2. HappyMom says:

    It drives me crazy that parents are told by pediatricians “not to worry,” and “kids develop at different rates.” Early intervention makes such a difference. I applaud all parents who have the confidence to make the (sometimes huge) effort it takes to get their child help.

    At nine, my daughter still struggles with dyslexia. Despite starting with tutoring and various types of PT and OT at age five, I still do not feel that I’ve gotten her the best or most help.

    So, to anyone questioning whether to go forward getting services and help – YES! DO IT!

    March 2nd, 2010 at 10:43 am

  3. Heather M says:

    I was a child with severe Apraxia. I did many years (8 years) of speech therapy at home and with a professional. Today no one would know what I came through. I have met speech pathologists at social events and they are in shock! My mother put many hours into helping me. It was a family affair – but it was always fun.

    In my head – I thought I sounded like I was speaking like everyone else. My speech therapist would record me saying words and play it back and I really had no idea. I remember this at 3. I am terrible at spelling and that was hard in school – however I have always been a strong reader. I was lucky to have an older brother who looked out for me when we were playing. My group of friends learned quickly what I was saying.

    Good luck with the therapy! Lot of hard work can really pay off!

    March 3rd, 2010 at 8:06 am

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