Apraxia, Maybe?

Thanksgiving went beautifully for us! Last year Zac could only eat quinoa drops during the meal, while segregated in a high chair.

This year he sat with us at the table and chowed down on 7 different foods! (Nine if you count butter, milk and salt.)

It was a glorious sight to behold.

Both boys and I got to eat a full, real meal…with no food snatching or accidental ingestions. Yay! And whew!

The best part of the day, though, was when Zac decided to give us the most awesome gift ever.

He said “da-da”.

My mom and Zac’s speech therapist have both reported that he has said da-da before, but he has never said it in front of me or Darrel. Ever.

Until Thanksgiving.

Darrel, the computer geek, was helping my parents with a computer problem and needed to use Mom’s laptop. Zac, unfortunately, was watching a movie on Mom’s laptop at the time, and was very upset when Daddy took it away.

He ran up to me, distraught, pointed to where Mom usually keeps her computer, and exclaimed “Da-da!!”, then pointing to the kitchen where Darrel had taken it.

I was floored!

And amused. The first time my son says da-da, and it’s so he can tattle on his daddy!

By the end of the day, he’d said it several more times, including when we got in the car to leave.

As I strapped him in to the car seat, he looked at me and questioned “Da-da?”

Just then, Darrel opened the other door to get Jed strapped in and Zac exclaimed “Da-da!” With a huge smile on his face.

I assume that was “Where’s daddy? Oh! Yay! There’s daddy!”

For the record, yes, this is the first time in his life Zac has said “da-da”…and he is two and a half years old.

I’ve mentioned that Zac has been going to speech therapy since May. What I haven’t mentioned is how it’s going.

It’s going slow. Glacial slow. Molasses in January slow.

Frustratingly slow.

He has made progress, but not much and not quickly.

I’ve been concerned and frustrated, as has his therapist.

Back in the first week of October, as we were getting over the stomach bug from hell and going through some rough times, we had An Incident.

Zac woke up at 6:00 a.m. screaming, crying, whimpering, flat out miserable.

I couldn’t console him. I did the 20 questions routine: does it hurt here? There? Anywhere? Do you want this? That? Anything?

And got nothing.

No response.

He was capable of giving yes and no answers at that point, but he gave me no answers at all.

I was in tears. I wanted to fix things, but I didn’t know what needed fixing.

In my exhausted, stressed state, I grew overwhelmingly frustrated at his lack of speech. Finally, after 45 minutes, I was able to figure out what had him so upset.

A band-aid.

He had gotten a scrape on his lower back, which I’d doctored up the night before.

He was reacting to the adhesive in the band-aid. When I pulled it off, the skin underneath was bright red and swollen. But pulling it off calmed him down, and by the end of the day the skin was back to normal.

In my frustration, I googled “why doesn’t my 2 year old talk”. Honestly, I don’t really know why I googled that. I think I was hoping I’d find some amazing stories of silent children suddenly speaking full sentences or something.

I didn’t get that. What I got were many links to various resources about speech apraxia. I read them.

And my jaw dropped.

With great difficulty, I managed to wait until after normal business hours before texting his therapist.

I think the world of her; in every way she’s proven dedicated, creative, thorough, and brilliant. So I just needed to bounce this possibility off her and hear her say it wasn’t a worry.

But that’s not what she said.

Turns out, she has suspected speech apraxia for a long while. Since mid-summer, to be exact.

Only one problem: Zac doesn’t even speak enough to evaluate him for an apraxia diagnosis.

And since speech apraxia is so serious, so complicated, and she knew of all the other issues we were dealing with, she decided the best course of action was to wait until she was certain he has apraxia before worrying me with a theory.

So what is speech apraxia? According to the folks at ASHA (the American Speech-Language-Hearing Association), it is actually called Childhood Apraxia of Speech.

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

Zac isn’t making enough sounds to be fully evaluated and given a diagnosis yet, but he exhibits many of the symptoms of this disorder.

• His hearing is fine.
• His therapist has already given him an oral-motor assessment and found him to have no problems there.
• He almost never babbled as a baby.
• He only has a handful of consonant sounds he makes (b, m, g, w, h) and two vowel sounds (a and o).
• Understands EVERYTHING that is said to him, but never talks.
• Rarely imitates sounds or words, and then only after he’s heard it stressed repeatedly more often than you’d like to have to say it (we’ve been working on da-da since June, as an example).

Plus other things.

Additionally, he seems to freeze up completely when asked to say anything. His most productive speaking times are when he’s playing, or when he’s angry or upset. It’s as if being distracted or feeling urgency allows his brain to work, whereas being asked to speak makes him anxious and scared.

Most heartbreaking of all, though, is when his therapist told me of a conversation she had with him.

He wanted to play with a toy she KNOWS he has a sound for, so she told him he had to ask for it before he could have it. He refused and started to get upset.

Miss K: Zac, I know you can say this. Don’t you want to talk?
Zac: uh-Huh
Miss K: That’s great! You know I’m here to help you talk, right?
Zac: (big smile, excitedly) UH-HUH!
Miss K: But baby, you have to try if I’m going to help you.
Zac: (face dropping into a frown) uhn-uhn
Miss K: You want to talk, but is talking just really hard to do?
Zac: (big, sad eyes) uh-Huh

Break. My. Heart.

His therapist also gave me a little test to try on him: wiggle my tongue back and forth from side to side, trying to get him to imitate me. She said normal kids will usually giggle and try to do it back. Kids with CAS may giggle, but if pressed to attempt it themselves will refuse, and often become angry.

I tried it. He became very angry.

Not enough for a diagnosis, but another brick in the wall, so to speak.

The confusing part is that while he exhibits many signs of CAS, he also does many things that are basically the opposite of CAS.

He has no sensitivity issues with his mouth (he loves brushing his teeth and has no food texture issues). He has amazingly good gross and fine motor skills. He has no problem eating.

Of course, the ASHA people say not every child will have every symptom.

In fact, I saw a great deal of similarities between FPIES and CAS. Both are little understood, no one knows what causes either, they’re both incredibly rare, each child presents differently, and there is no cure…only treatment.

(Why does my son have to be the rarest of the rare, huh??)

So what’s next for Zac?

Well, we’re applying for TEFRA, which would help us pay for the intensive therapy he will need (3-5 sessions per week) if he does have CAS. Neither insurance plan offered from our two employers covers more than 20 speech sessions per year. At up to 5 sessions a week, that could be used up in a month, and we can’t afford $115 per session.

We’re also going to have to get an official diagnosis. Unfortunately, there’s only one place in NW Arkansas that officially can diagnose CAS, and they have a wait list for initial appointments up to 6 months long.

And as I said, Zac isn’t speaking enough to be diagnosed, even if we were able to get the appointment.

So we continue doing what we’re doing, waiting until we get TEFRA and the nod from Miss K that Zac is getting close enough with his speech to go ahead and get on the wait list for a diagnosis.

And then we’ll see if we are right or wrong.

As for what we’re doing, well, Miss K has suspected CAS for a while. While she can’t actually officially diagnose him (though she is fully certified to treat CAS), she has noticed that when she implements therapy techniques that are applicable for both normal speech delays AND CAS, Zac responds more favorably. So that’s what she’s doing.

We also now have a “communication book” for Zac.

I’ve taken (and continue to take) photographs of things in his life; things like the foods he eats, the toys he plays with, the movies he enjoys, the people in his life, etc. Miss K put them together in a 3 ring binder so that when he wants to communicate with us beyond his limited speech abilities (which is more often than I would like), he can use photos to “tell” us what’s on his mind.

We’ve only had the book for about 3 weeks now, and the most progress in his speech we’ve seen since May has happened in that time.

It’s like having a way to express himself takes the stress of speaking off his mind, so he can relax…which allows him to speak.

There are other little things we’re doing, like no longer saying “can you say _____?” to him. (He literally CAN’T say it, and phrasing it that way could add pressure to an already stressful situation.)

Plus other little things like repeating our words to him more frequently, as in if he comes up to us with a ball, saying “oh, did you get the BALL? You love to play with the BALL! BALLS are fun! Can you kick the BALL?” instead of the usual-for-a-2-year-old “you got the ball! Want to play? Kick it!” We make sure to say the object word as often as we can in that moment.

I hate that this may be his diagnosis. I hate that my sweet Zac potentially has ANOTHER “issue” to add to his collection.

But I feel good about the fact that we are in such good hands, and that we (his therapist and his family) are doing everything we can to be proactive in the face of this.

I’m only sharing this for 3 reasons: one, it was starting to get awkward writing certain things without explaining the potential for CAS. Now I can write more naturally.

Two, in case anyone else out there deals with CAS, I’d love any input!

And three, in case someone else out there is in a similar predicament, so they know they aren’t alone.

For now, we will keep encouraging him the way we’ve been instructed, and we’ll relish the (hopefully) now common sound of “da-da” coming from sweet Zac’s little mouth.

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Anyone else dealing with CAS? Is there anything people who suspect CAS but can’t get a diagnosis yet should do that you can think of?