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Sunday, December 9, 2007

Say What?

*Author's Note: this post is all about my recent exploration into my son's speech delay, and learning new words like "apraxia", and I really drone on and on... So unless you are interested in these things, or you are familiar with how Sean-Peter "talks" and are curious about what the professionals say about it, or you just think Sean-Peter is so darn cute and you can't believe that there could be anything wrong with him . . . you might want to take a pass on this one. I won't hold it against you. Honest.

**To my family -- I don't think I have grandma's quote quite right at the end. Can someone tell me what they remember her saying?

Sean-Peter's lack of speech is apparently more lacking than I had even realized. After meeting with an audiologist, a speech pathologist, and an ENT, it has been determined that Sean-Peter has ... a major speech delay! Okay, so that wasn't exactly a surprise, but I have been learning some things about my son along the way that have been illuminating for me, and portentous of a longer road of therapy ahead of us than I maybe realized.

The base doesn't do speech therapy, so we got a referral from TriCare to have a speech assessment done by a private company off-base called "Therapy Connection", where they were very insistent that I understand they have a year-long waiting list for children needing therapy. They said it so many times I got confused. "But we can be on the waiting list, right?" I mean, I understand there's a waiting list. But everytime I said that they kept telling me that there was a waiting list so I might want to look around for availability elsewhere, because they, you know, have a waiting list. Well, of course I'll be looking around for other care, but in the meantime can I get on the waiting list? You know, the one that I do understand you have?

Anyway, once they understood that I understood that there's a waiting list we were all good. It was like they were going above and beyond being all nice and concerned, and it just served to confuse me more. I'm accustomed to military healthcare: I don't do nice and concerned. And this place did seem very good, judging by the service they gave my son as well as by the reviews I got from other moms in the waiting room. And truly, seeing what some of the problems are that other children have out there, I have nothing to complain about.

Whenever the subject of my son's er, um, speech has come up, I have found it very difficult to accurately describe what it is he does. I have tried to explain that he is unintelligible because he swallows his words, or that the sounds he makes are gutteral; more often than not he doesn't even open his mouth and will "speak" entire paragraphs without moving his lips until he ends with a punctuated "Mahm!" Or, just as often, "Bap!", his all-purpose word.

But the pathologist who did his assessment helped me to understand that most of the sounds he makes actually get lost up in his nasal cavity, not down in his throat. She also confirmed that he can make many of the sounds a three-year-old should physically be able to make: he just doesn't put them together to form intelligible words. I went into this assessment with my son with terms like "articulation" and "phonological deficit" bouncing around my brain. However, by the end of the hour, it was clear that his speech is not even far enough along to "label" him with any of these terms. In short, his speech is not far enough along to determine what kind of speech problem he has.

Toward the end of our time with the pathologist, she was finally able to get a better look inside Sean-Peter's mouth to see that there weren't any apparent physical or structural issues. And with that possibility ruled out for now, she wondered aloud if he might have apraxia, a term I was not at all familiar with. She quickly explained that childhood apraxia of speech has to do with the connection between the brain and the mouth, and she gave the simple example of a TV and an outlet: both function fine, but the cord connecting the two isn't working. Or, as I googled it later, apraxia has to do with "speech motor planning and programming". Children with apraxia have "difficulties transmitting the speech message from their brain to their mouths". This would explain why Sean-Peter can make these sounds but has difficulty using them in words.

A couple of other descriptions of apraxia resonated with me while I was googling; one said that children with apraxia may not speak intelligibly, but they sure do have a lot to say! This is so true for SP: he will go on and on and on and on ... even gesturing and jabbing his finger at you, and it's obvious he's giving you the business, but you have no idea what he's saying. John and I have laughed many times because one day it's all going to become clear and we'll get a taste of how much smack-talk he's been dishing out without us knowing to curb it.

Another description that struck me talked about those moments when you're trying to get them to say a certain word, and you can see in their expression that they really are trying. But he opens his mouth and kind of moves things around and ends up not making any kind of sound at all. And you can see the confusion come over his face like what is it I'm supposed to be doing, anyway? and it really is so sad because you can tell that he really is trying but he just can't do it. It's at this point that I say "Good job!" or something just as inane, because I am loathe to see that expression of confusion turn into frustration.

Of course, these moments of cooperation aren't as common as the times I ask him to say something and he simply responds, "No!" That's one word he doesn't have any difficulty opening his mouth for.

Our appointment with the ENT specialist proved to be quite interesting as well, although I went in there really just to rule things out. You know, so I can tell people with confidence, Yes, his hearing is fine; yes, his ears are fine, no excess fluid; no, he doesn't have enlargened adenoids or anything growing on them. That last one really has come up. The things out there you can worry about, if you really wanted to worry about something. Sheesh.

Sometimes in the military healthcare system you get a doctor who really makes you forget that they have nothing to lose by treating you like everyone else in the system. John and I have wryly joked over the years that with military healthcare you sure do "get what you pay for". Ha-ha and all that. Occasionally you come across a military doctor that doesn't remind you that their uniform shields them from malpractice suits. They're usually the ones that care so much they seem completely burned out, or they're counting the days until they're getting out -- and they always have a plan.

This doctor was one of those -- one of the good ones getting out, that is. (And, yes, he does have a plan: Eau Clair, Wisconsin will soon be gaining a very capable ENT.) He really seemed to be interested in Sean-Peter's particular condition. It wasn't the first time I'd heard, "He really is doing something unusual there, isn't he?" But it was the first time I finally had it labeled: "Hyper Nasal Speech". And he explained that he sounds the way he does because his palet isn't touching the back of his throat when he "talks". But it is capable of touching the back of his throat, because he can make the hard "g" sound. He did examine inside his mouth to rule out any physical abnormalities ... and then he left the room to do some research. Maybe this isn't novel in the "real world", but it is in the one I live in. He also acted very concerned that SP won't be receiving the therapy he needs if there's a waiting list, and he put additional notes on his file in the computer for his primary care provider that should help us if we need to come back for another referral.

But hopefully it won't come to that, because I have been working the local school district as well for what therapy Sean-Peter will qualify for through the public system ; it's just taking longer to get that paperwork squared away and appointments scheduled. In the meantime, meeting with these professionals and focusing on what I am now learning is a real problem with Sean-Peter's speech has subtly changed how I am doing things at home. I really don't think I was ever treating him like he didn't want to talk. I mean, he's sharp as a whip and twice as ornery, but it's been pretty clear that he isn't doing the mumbo-jumbo speech thing on purpose. But I do have more compassion now and am simply paying more attention to every sound he is trying to make -- and he is gaining ground in opening his mouth for more and more words, even if those "words" are still unintelligible. That's still progress, in my book.

I'm also slowly reintroducing sign language -- something we stopped doing over a year ago, I don't remember why. And I'm trying to incorporate some word drills that the pathologist suggested to me as well as some simple things to work on at home that I picked up from my googling. So far as I can tell, it's too soon to "diagnose" him with apraxia, but it's as good a place to start as any. There are worse things to be wrong with my kid, that is for sure. When I look at my little family, I am downright amazed at how amazingly healthy they all are. And when I look at my extended family -- seven nephews and all -- I am downright dumbfounded. In reference to my sister's recent blog post, if talking too much is the worst thing we have to deal with in this family, I will thank my lucky stars.

Of course, it's not luck at all. As our grandma used to say, looking at a roomful of grandchildren, "Lord, bless these wonderful children." Thanks, grandma. It appears to be working.


Jerilyn said...

You are right; God has been very good to our family. And He will be to Sean-Peter also; he will become completely intelligible.

On a more natural note, my grandma (or GranGran, I can't remember which) always said "If there's better (or nicer, or better looking, or smarter-whatever the circumstance) kids I reckon they'd be mine."

judy said...

Jolyn, thanks so much for the information about Sean Peter. Sounds like you're on the right track to get help. I do think that after all the paperwork and meetings the school will be a really good source of help. I don't know about Ohio but in Kansas the school therapists are well-trained and I think effective. I think they'll be able to tell you how to help at home, too, although it sounds like you're getting a handle on that, too. Give him a big hug from me!

Cherilyn said...

Jolyn, I read the "things to work on at home" and I agree with so many of the things they said based on my experience with Dean. A couple things that stand out:
1)He must trust his therapist and find him/her predictable and safe.
2) Play is the basis for all therapy. You will begin seeing all books, games and toys as an opportunity to practice. Some toys we used didn't directly correspond to his therapy but were things he loved. Before he could get another turn with the toy, he had to try to make his sound. Then much applause after he tried and then got his turn. I remember an Old MacDonald toy where you pulled a handle on a barn "bank" and out came animal "coins". The first one to get four of the same animal won. Dean loved that game and would do whatever his therapist asked to pull that handle. And he only got to play it when he was with her.

Eventually after he had shown some progress/success I would wait for him to put what he had learned into practice before I would get him what he wanted. For example he used to use his own sign language and grunt to get a drink. After a few weeks of therapy and I knew he could at least make a sound of some kind, I made him try to say it before I would give him the drink. Irregardless of how it came out, I applauded greatly his effort.

You will begin to see how amazingly Sean-Peter has been able to compensate for this. I remember realizing with Dean, "He's pretty smart to know how to get everything he wants without speaking a word!" The trick is to get them to give up their self-created techniques that are working to try something new that seems harder at first and may not have the same affect at first. So praise for their attempts is crucial.

The good news is that Dean is fine now and Sean-Peter will be too! I must admit I was skeptical that a speech therapist would know more than me, his mom, but I was humbled and blown away by her expertise, manner and interactions with Dean. You will be in awe of what they can do and what you will learn!