Nico's diagnoses.

[lollardfish]

When Nico turned three in January, we passed out of early intervention and into the school system. We knew that the therapies would change (from our house to in school, from an hour a week per therapist to something shorter, from complete financial support to relative financial support for prescribed therapies/equipment), and they did. We wanted to give school, and Nico, and us, a chance to adjust before we considered additional therapies or interventions. Six months passed. The school program was fine, if not especially good at communicating with us, but Nico's speech and OT skills were not improving as rapidly as we might hope (despite ample evidence of good cognitive understanding) and his behavior (especially around eating, but not exclusively) was deteriorating.

So two things have happened. First, we went to a developmental pediatrician for an overall evaluation. At the time we were getting wild tantrums almost every hour, and while that's died down nicely since school started, the other issues remain critical. Second, we became friends with a family who are musicians, have two kids both slightly older than our two kids, and who we started to see around in multiple venues. J., the mom, is a highly-trained (PROMPT certified) speech therapist, who volunteered a new take on Nico's lack of sound production - speech apraxia. She's been working with him for a few weeks now, and already we are thinking about Nico's challenges entirely differently. Nico seems to be thinking about his motor planning for speaking, and eating, differently too, although progress will no doubt be slow.

I'm sort of irritated we and his therapists missed it, although it's apparently entirely typical that it happens. With a diagnosis of Down syndrome, one expects severe cognitive delays, so isn't surprised when speech doesn't come. And yet Nico understands complex language on a receptive level, and signs beautifully. When I told a friend who has a daughter with speech apraxia about the diagnosis, she asked, "does Nico usually just say the ends of the words?" as that's a very typical symptom. I said no, blithely, and talked about other symptoms. EXCEPT HE DOES, almost universally, when trying to say a word aloud, say the second half.

And so we have a new diagnostic piece and therapeutic approach to add to the mix. He's now working on speech in school, with J., and with a speech therapist in our HMO. The pediatrician is going to recommend a sensory eval with both OT and Speech experts as part of a feeding team, a gastrointerological (sp?) eval, a behavioral eval (mostly to give us tips), and then to start adding new pieces to the motor/PROMPT therapy that J. has already begun. We're to find a therapist (we have recommendations) that is trained in PECS to begin implementing that.

It's going to be a lot of work for all of us. Some of it isn't going to be covered, or covered fully, but I finally feel that we're on our way to understanding how Nico works and what we can do to up his chances of communicating successfully. So off we go.

Comments

[creidylad.livejournal.com]

...because, I am going to say this and it may not be what you want to here, apraxia is HARD. A lot of kids with it, with intervention, talk normally by the time they are 5. This requires a lot of work, and it's work Nico may not be able to do at the same speed as the typical apraxia pattern. We are totally there because Gwen's apraxia is especially severe; Nico may be there for other reasons, and waiting for the apraxia to correct until the age of 8 or 10 or whenever may just mean waiting too darn long, which is why I am suggesting the augmentative communication idea.

Though to play Devil's Advocate with myself, an AC device is just one more thing for Nico to have to learn; you may have better luck instituting ASL, but that assumes that everyone he is going to want to communicate with from now until his apraxia corrects is going to be able to understand ASL.

I'm clearly not an expert and I bow to the experts, but I wonder how many experts there are out there in the field of DS/apraxia mixed...

[creidylad.livejournal.com]

And btw, the school should totally be able to implement PECS there, as well. You might want to ask to see if they are already using some aspect of it and are willing/able to push it with Nico/in his class more.

[creidylad.livejournal.com]

Here we are: http://www.proloquo2go.com/

[lollardfish.livejournal.com]

Nico has, to varying degrees of clarity, somewhat around 100 signs. Maybe more if you could all the letters, for example (he can probably do 20 of them to some degree).

We have the device pictured here (http://www.amdi.net/store/communicators-1/tech-series/tech-speak-1/tech-speak-4x32-bgch.html), bought for us via E.I. I mostly hate it. I want either something much higher tech (including the I-touch option) or much lower tech (pictures printed out). Part of the problem is that we got the device and then EI ended and we had new therapists and they didn't buy-in. Also, they weren't trained in PECS.

The doctor says he'd like to start with PECS and make sure we get Nico into the idea of a picture being a symbol for a thing he wants to say, then we can discuss more complex devices. I would be surprised if a device isn't in his future.

J. says that all these signs are good, but since he's not deaf, he won't be living in deaf culture, and signs are dependent on the other person knowing sign. Also, once you sign, the sign is gone, but the child may think he/she has communicated and not understand why the result isn't there. Whereas a picture can just sit there.

And yeah, once we have a full set of diagnoses, recommendations, medical team set up, etc ... it'll be time for a new IEP for the school.

Also, your input is so helpful to me. Thanks.

[creidylad.livejournal.com]

Good good! You will continue to receive my random input as I think of it :)

Remind me to growl at you sometime about the year we lost on the AAC device due to a non-buy-in of one particular therapist. Ugh.

[creidylad.livejournal.com]

Also, I suspect J is spot-on about the signs. It's a dicey situation; now that Gwen is 8 and is very self-conscious about social issues and rejecting the AAC somewhat (which is even frustrating on a social level as the other kids were drawn to hang out with her because she has had the AAC), she still falls back on some signs. 'Play' also means 'plain' like, 'I want a plain bagel.'

But the trouble was also what J said; when she was younger she'd gallop up to you, sign something, then gallop off, oblivious as to whether you were looking or not because she refused to make eye contact. It made signs extremely frustrating, so we just didn't push them.

[buttonlass.livejournal.com]

I am all over this system of picture representation! I had just showed this page to David literally, two days ago.:) I would much prefer for Nico to carry a less expensive, less bulky, more intuitive thing like an iPhone or iPad than a device of lower tech and more expense.

What I've been trying to figure out is if you can add symbols to this system. Because we do have the Boardmaker cd's and some other things that work with it.

[creidylad.livejournal.com]

I've been reading the reviews at the iTunes store; if you look in the expanded reviews, there is one 4-star review by '80sgal1' that you might find helpful; she speaks of the limitations and also seems to be coming from the POV of having a son with DS.

Years ago, Christopher and our friend Scott were dreaming about trying to develop an ACC just like this; it's still in the early stages of development, but looks pretty robust for what it offers, though as the lady says, not as flexible as she might like, others say it is 'easy to program.'

[buttonlass.livejournal.com]

We do practice ASL with Nico but we also were already evaluated once for an AAC device.

The issue with DS/apraxia is one of expectations. From what I've been reading the diagnosis of apraxia in our kids is a relatively new phenomenon because people tended to assume the delay was cognitive not motor. No one expected children with DS to speak well so no one pushed it when they didn't. We're lucky in this, as with so many things, because of progress in the field of DS research.