Moves in Curves

I wrote an article for Hippymom about CAS. Read it here.

Want to listen to my boys’ speech to hear what CAS sounds like? Our YouTube channel.

Our Apraxia Kids STARS page.

I uploaded that dinosaur video yesterday, and YouTube popped up a video in the “more like this” column that I had put up last year from their 4th birthday. And it was so odd to watch it and think it was only a year ago, because our paradigm has shifted so much since then. They were silent. The only word either of them spoke in the video was a garbled “Mama”. C signed a few times in the video, and otherwise they were silent. It jolted my heart to watch it. I listen to them now and worry about their pronunciation, they’re still so distorted, leaving out final consonants, and certain sounds are very hard for them to make, but they talk. They have a huge vocabulary. They talk in paragraphs. They lecture me. It’s wonderful. It’s such a huge change in just a year. It lets a little of the tension out of my personal cloud of motherly worry to see that change, and it gives me hope that they will get there one day. I want to try to remember this huge explosion of communication they’ve had in the last year whenever I feel panicky about their future, wrap it up in my heart and keep it close, something to give me hope.

Yes, I’ve now got my old Blogger posts imported to here. Well, most of them. I deleted a few, but the stuff about my kids’ speech progress was mainly what I wanted. It was fun to go back through them (adding categories and tags) and see how much progress my boys have made in the last two years, especially in the last year. A year ago, Weapon X could only say 9 words, and that was being generous counting approximations and “uh-oh”, which is only sort of a word. He’s talking in paragraphs now. His speech is still very distorted, but it’s a huge improvement in his expressive language, and he’s still making lots of progress. This morning he said “Dat’s so funny” with an F sound instead of the usual “punny”. Project Alpha’s made huge progress too, though is also very distorted. But it’s really encouraging, and sometimes I forget how far and how fast they’ve really come, so it was a good reminder. I still worry a ton about them, because they are still very delayed in their expressive language, but it’s getting there. It’s a huge relief to have them communicating. I used to cry almost every night about them not talking. And now, last week, I had to tell Alpha to stop talking and do what I told him to do.

So yeah, I’m glad the importing finally worked.

The boys are talking a lot, especially D. His speech is still distorted, but he’s saying a ton. He repeats everything I say, and will usually try to modify his pronunciation (with varying levels of success) when I model the correct way to say something. He has particular trouble with dipthongs and final consonants still, but he’s saying long sentences and telling me stories. C has much clearer speech but less structure (grammar and parts of speech), he tends to be pretty simplistic, like “Go to play!” (his most common refrain, he always wants to go outside and play in the mud, even if he has to make the mud with the hose, or ride his trike up and down the front walkway). He says “Me too!” and “No me!” all the time too, to whatever D is up to.

The “y” sound gives both of them trouble, though D’s favorite word lately is “why?” He asks me why constantly, about everything, and will keep asking until I give in and say I don’t know. We just had a conversation today that went:

Me: We need to wash the car while we’re out, it’s covered in bird poop again.
D: Why, Mama?
Me: Because there’s a tree over the driveway, and the birds like to sit up there, so they poop on the car.
D: Why?
Me: Because birds don’t go on the potty like people.
D: Why?
Me: Because they’re birds.
D: Why Mama?
Me: Um. Because Heavenly Father made them that way.
D: Why Mama?
Me: I guess he thought it was a good idea at the time.
D: Why?
Me: I don’t know. You’ll have to ask him later.

Their other big discovery lately is the Ultimate Boy Realization that the world is their urinal. C will be playing outside and suddenly drop his drawers and pee on the yard/sidewalk/tree/etc. D’s done it a few times too. I suppose I ought to have seen this coming, after all, my brother was only about 5 when he had me judging his peeing contests with his buddy from next door. So now I’m convincing them that peepee needs to go only in the potty.

They love playing pretend right now too. D will tell me “I be Mama, you be baby, C be Dada.” (C  says “Me Dada, buh Mama, you baby.”) They’re really into Max and Ruby, D sings along to the theme song every time it comes on. Yesterday D planted some jelly beans in the backyard, and told me they were going to grow into a beanstalk, and then went on chattering about the beanstalk while he played in the mud for a good hour. I asked him what would happen when the beanstalk grew, and he said he would climb and climb, and C (kiss-in, it sounds like) would climb. I said, what do you think will be at the top? and he said, “Candy. And toys. And a red elephant toy.” and I realized that was the Easter Max & Ruby DVD that my mom had sent them. C liked the “mon-ter” version better. “Biiiiiiig mon-ter, eat me!” I think he’d like to be a monster. My mom pointed out to me that most of the animals they pretend to be are carnivorous: alligators, T-rexes, lions, etc.

We still can’t afford private therapy for them. They’ll be going to the in-between kindergarten next year. Academically they are ready for kindy, but their speech is not ready yet. Their cognitive skills test 3 years ahead, and they’re caught up on fine and gross motor skills and their social skills. D’s still kind of shy when he’s away from C, but I think that’s just his personality. So they won’t be in regular kindergarten, but in the one that’s basically a continuation of the developmental delay preschool, but they also won’t be in the handicapped kindergarten (I have no idea what it’s called, but I’m grateful) and they expect them to be mainstreamed in first grade.

We had another hearing eval (first one was at 18 months), and they said their hearing was fine, though they had suspected from D’s speech that he had some “standing” fluid somewhere. Turned out not. Maybe he used to and it drained and that’s why he suddenly is repeating everything I say? I don’t know. The audiologists were much nicer after I told them I thought the last eval was bullshit, and showed me actual number results and graphs and things this time.

We have an eval scheduled with a developmental pediatrician next month. We’ll see how that goes. I thought the pedi had made an appointment with an ENT to discuss C’s continued stridor from his laryngomalacia, which the ENT assured me he would outgrow by age 2. D was diagnosed with laryngomalacia as well based on that he is identical twin to C (thus I suppose the ENT thinks they are physiologically identical in every respect, which only goes to show that he doesn’t understand twins), C has it, and D makes the same noise. He didn’t bother to scope D and look at his vocal cords. I was very unimpressed by that particular ENT, though. At our follow-up evaluation in 2006, he did not get within 5 feet of C, merely said “oh he’s fine, he’ll outgrow it” and walked off. After making us wait for almost 2 hours to see him. So I make sure I give him bad word of mouth whenever someone mentions anything ENT-related.

So, I’m thinking about switching our pedi. I do still like her, but she’s very much not proactive about getting a diagnosis for my boys, and often acts like I’m just being a pushy mom who’s overreacting. I liked her much better when the boys were babies, and we didn’t know anything was wrong. She’s a great pedi for “normal” kids, I guess, but I need someone to be an advocate with me, not be another person I have to fight in order to get help for my boys. I have to shop around for a new one though. I need to find a local special needs parents group and see who they all like for a coordinating pediatrician.

Anyway, there it is. They’re doing well but we still don’t have a diagnosis for their speech delay. It doesn’t sound like we’ll ever have one. Their therapists don’t think they have verbal apraxia, and everyone agrees that they’re not autistic, so at least we can rule those out. I suppose I just have to keep pushing. And get a new pediatrician.