A is for Apraxia

One of the hardest things in life is having words in your heart that you can’t utter.

—James Earl Jones

We met with a representative from our school district on Monday to talk about the special education services that are available to A from now through kindergarten and beyond. Later in the evening, Justin and I sat talking about it. I got quiet and a little teary.

We’d both felt good about the meeting. It was encouraging in a lot of ways.

It’s just that the reality and scope of what all of this means for A and for our family keeps sinking in at surprising times and in surprising new ways. [Insert sentence here about how I’m cognizant and grateful that it’s not so many much more difficult things that other families deal with. But this is hard and I’m learning to be okay with admitting it].

Earlier in the day before the meeting, Ash and I were sitting on the couch and he was trying to tell me something. He was making lots of sounds, but not one of them made any sense to me. He tried probably 8-10 times to tell me. I asked him to show me, but it must have been something abstract because he couldn’t do that.

I was sad and frustrated and, to be honest, a little irritated all at once. With myself, with him, with the whole situation.

I’m A’s primary caregiver, so I’m usually the one who is able to piece together what A is saying via a patched-together mess of signs and context and incomplete word sounds. When even I can’t place it, I feel so helpless. Ash is a bright kid with boundless enthusiasm and a lot to say. We can’t understand it.

I’m realizing now that for a long time I thought it was just a matter of A learning how to make the sounds that were missing . . . how to say the “b” in ball or the “c” in cat. But it’s so much more than that. When prompted, most of the time he can imitate the sound we’re going for (though he still mixes up sounds and subs in one he knows if the one we’re asking for is too hard).

For A, the neurological connections that allow most of us to move our bodies and our mouths without even having to think about it are not (yet) present. It’s like he has to plan every movement in a word before even getting started. It’s no wonder than when he’s trying to talk spontaneously, he’s leaving all the hard parts out.

Here’s A saying his numbers: Uhn, ooh, eeh, err, igh, ix, enn, eight, ine, enn. His ABC’s sound like this: A, E, E, E, E, eff, E . . .

Milk comes out “itt.” So does sit. Hurt sounds pretty similar too. He’s sitting next to me sorting his crayons into piles of colors right now, and just said “ooo . . . ow.” Which, of course, means “blue pile.”

There’s not a day that goes by I’m not thankful we learned signs. I had no idea at the time that even after A started “talking”, we’d need them. Almost more than ever. These days, he expects us to understand.

***

A is rapidly approaching his 3rd birthday, which means he will age out of the Early Intervention program he’s been a part of since he was 18 months old. I’m simultaneously excited and a little sad. We’ve had such strong support — speech therapy in our home once a week with an amazing therapist and a structured play group once a week (play, music, arts & crafts, snack, etc). We recently added another weekly class — a pilot program for children with motor-related speech delays. (They are seeing a huge increase in the number of kids with motor-related speech delays, so they’re working to find new therapies that might work better for those children).

The rep called out A’s struggles within 5 minutes of arrival. It’s always a little startling for me as a parent to see how apparent his delays are to a trained eye. Motor skills. Apraxia.

We’ve avoided an official label for A’s delay because under 2 1/2, a good diagnosis is difficult, and also because our ST didn’t want to freak me out. She knew I would do research (because, as she describes me, I’m Type A. Never had that description in my life — ever — until I became a parent and I had to figure out a way to feel, if not in control, informed about how best to help my son. I’ve never been so organized in my life, but it’s by necessity.)

But at the meeting it was clear that the word we’re using is Apraxia, or more specifically Childhood Apraxia of Speech (CAS). This wasn’t a shock, but the whole meeting still felt full of such odd contradictions.  He knows his ABC’s and numbers but can’t say them. He knows and understands a huge vocabulary. But left to his own devices (no prompts), he’s limited to a few sounds. He can spell ASHER, but if he were to get lost, he wouldn’t be able to tell a grownup his name. Such a smart, social kid, held back by the inability to speak.

Our representative stated it this way: “He’ll go from developmental ed to the gifted program once he’s older — I’m calling it now.”

I’ve been trying to find a good explanation so friends and family will understand why this isn’t just a “he’ll catch up” situation and why we’re so invested in his therapies. Here’s a great description I found in this article:

Children with apraxia of speech know what they want to say, but their brains have difficulty coordinating the muscle movements of the lips, jaw and tongue necessary to say those words. Often, these kids speak in only vowel sounds or chunks of words and sentences are missing.

Yup. Exactly. This. (For more information, this was also helpful).

The causes of CAS are largely a mystery. The true numbers are hard to pin down, but between 1-10 of every 10,000 kids deal with it.

We know that there can be a genetic component (though no one in either of our families had speech issues. We are keeping our fingers crossed for F, as it’s not uncommon for sibs to both have difficulty). We know that it can be related to low muscle tone and a lack of movement in infancy. Check and check in A’s case, especially when we think about months spent in the boots and bar to correct his metatarsus adductus. If I had it to do over again, we would have found another way to correct his feet, but we went with what we knew at the time. A had eating struggles and met all of his movement milestones quite late even before the boots and bar, so though the lack of movement didn’t do him any favors, chances are we’d be here anyway. I try not to make myself crazy with what-ifs and chicken-egg scenarios.

What we are trying to do is figure out the best way to help him. We’re realizing we need to prompt him for the right sound, even if we are able to understand him, so he can get good practice in. It’s a little exhausting to be lay speech therapists all the time, but the practice matters, so we’re doing our best to remember.

In December, A will be evaluated by the district to see if he qualifies for services, among them continued speech therapy and developmental preschool. I’m fervently hoping Ash gets into both. Preschool would be mornings 4 days a week and a bus would pick him up here in front of our house. Without knowing school is a possibility, every time we pass a school bus, A points, says “us” and then signs “my turn.” So I think he’ll be ready.

It’s painful at times, but I can say without hesitation that this beautiful boy is making me better. He’s opening my eyes and my heart to other parents, other kids with all kinds of disabilities (our playgroup has a child with cerebral palsy and another with spina bifida). He’s teaching me how to celebrate each day’s victories, no matter how small. They’re all significant.

Yesterday morning we got up and the sun was just starting to shine in the windows along our stairway. A’s eyes LIT UP and he yelled at the top of his little lungs, “AY! IME! UHN! UP!”

…while signing “day” (a sign we didn’t teach him?) and “sun.” Daytime! Sun is up!

I love waking up to that kind of unbridled joy every morning.

And I know better than to take for granted the fact that I understood why he was filled to the brim with it.

I’m slightly overwhelmed but so grateful.

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an update. finally!

A long-awaited update on my dad, sorta.  After re-running all the tests in Seattle, the doctors there determined that a valve replacement wouldn’t likely be the solution to dad’s low heart function, as much of the heart has been damaged by radiation treatments, past congestive HF, and resulting pericardectomy.  They’re looking into medications that can help.  On the one hand, we’re genuinely relieved that what was described to us as a risky surgery won’t have to be done at this point in time.  On the other hand, while much of Dad’s life activities (biking, especially, which he loves) won’t need to be adjusted, the docs are unsure if he’ll be able to return to work, as any kind of lifting may be off-limits for him going forward.

More tests to come, and while this could be quite an adjustment for my folks, we’re now thankful for all the delays at our local hospital.  If there would not have been so many delays and bumps, it’s possible he could have already undergone a surgery 1) that had a lot of uncertainty for the docs going in, and 2) would not have helped him all that much.

We’ve really sensed your prayers and a peace in the midst of one-thing-after-another, so for my family and myself, thank you.

quick update

Hey all… thought I’d give an update on how things are going.  The general gist is, “WTF?”  I don’t mean to complain, but… seriously?

Dad developed shingles about a week and a half ago, probably as a result of all the stress of thinking about surgery, going through testing, etc.  Took that in stride, and his case didn’t seem to get as painful as shingles can sometimes get, which is good.

We’ve been waiting rather anxiously for Dad to meet with the surgeons to figure out when his surgery will be.  About two hours before the appointment yesterday, my mom was rear-ended while doing deliveries at work.  She’s already hurting.  This was the last thing her poor body needed.

At the surgeon appointment, they reviewed the tests and said the surgery is going to be quite serious — the way it was explained to me, because of that membrane (the paracardium) removed 20 years ago, it’s as if the doctors are working without a guide to where the particular arteries are located.  They’re considering sending him over to Seattle an hour and a half away rather than doing the surgery near home.  The medical center over there has a few more resources to deal with caring for him if something unplanned were to happen.

We’re just all feeling overwhelmed and scared, and things keep getting added to an already heavy load.  I know we’re not the only family who has dealt or is currently dealing with this kind of stuff, and I’m thankful for small graces along the way, but I’d be lying to pretend like we’re not going through the wringer on this one.

We’d sure appreciate your thoughts and prayers.  I think we’ve got a long month or two ahead.

In other news, this picture makes me smile… and then giggle a bit.

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Only you can prevent swine flu.

phew.

Hey!  We survived Christmas!

Never again.

We drove down to Poulsbo Friday (3 hours), spent the night with J’s mom and brother, drove to Port Orchard (45 min) and spent the night with my folks on Saturday, drove back up to Bellingham on Sunday (3 hours) so I could work at 5:30 Monday morning, drove back down to Port Orchard Monday afternoon (3 hours), to Poulsbo and back Christmas Eve (1 1/2 hours), to Poulsbo and back Christmas morning (1 1/2 hours), and then back up to Bellingham (3 hours) Christmas night so Justin could work at 5 am the next morning.

I’m no mathematician, but I *think* we spent over 15 hours in the car.  We looked bewilderedly at each other several times this past week, as in, why the heck are we doing this, again?

It’s weird to say this, but I think I feel more like I’m on vacation now that Christmas is over and I’m back to work than I did when I was off.  So relieved to have all of it done with.  And — we’ll make far more laid-back plans next year.  Ack. 

Here’s a few pics from Christmas (I have no excuses for the boys, who were on a real tear). 

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It snowed — the first time I’ve seen snow fall on Christmas Day!

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We got some fun new games for Christmas — Settlers of Catan, Carcassonne, and Chess.  I’ll probably write about their magnificence soon — we’re really enjoying them.

Hope you all had a good Christmas — will write more soon.  For now — time to go to bed and finish recuperating.  🙂