lollardfish (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
lollardfish) wrote2010-09-22 01:26 pm
lollardfish) wrote2010-09-22 01:26 pm
Nico's diagnoses.
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.
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.
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diagnoses are a wonderful thing. i mean, hard, but at least then you know what you're working with.
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K.
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At any rate I'm glad things are finally on track.
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Anyway, it was the feeling that we were missing things that led us to the developmental pediatrician, and then J. magically appeared in our lives to help sort it out. Our primary pediatrician, school therapist, or non-specialist therapist might well not be able to recognize such things. Even our endochrinologist or ENT, both of whom are concerned with development and are really sharp, don't really have the same expertise as the developmental guy.
I wonder what Dr. Stella thinks ...
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K.
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Second, I always worry about services through the school system after the age of 3. Most of the speech therapy and OT becomes 'indirect' therapy rather than one on one interactions, and the high caseloads carried by most PT/OT/Speech people who work for the school district makes it impossible to do more than the most cursory, "Well, he's not talking but he DOES have DS..."
A private therapist often has more time to think about the individual child instead of looking and saying, "Yep, DS." I strongly believe in using the private as well as public options here.
Third, every child with a chronic condition needs parents who pay attention and advocate for them. Not every child has this. I am delighted beyond words that Nico does-- and I love you guys in part because of how much you do for Nico, and what fantastic parents you are. (more next)
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K. [despite having been in it]
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Also I am told that there is a program (I think for the iPad?) that uses the PECS visual symbols in a way where the kids can hit them and have it produce speech... I'll try to root out my reference for that and pass it on.
One thing to ask the therapists is whether Nico is a good candidate for an augmentative communication device a la the Dynovox, PRC Vantage or similar.
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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...
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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.
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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.
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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.
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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.
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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.'
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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.
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Oddly, children with DS are often much stronger visual learners than other ways. Some research has been done into the possibility they have a higher rate of photographic memory than other populations. So pictures are good.:)
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We were ever so grateful to have a PECS food binder when Gwen was in preschool. Not all of the little velcro-attached icons in it were PECS; some of them were photographs or other pictures of the foods she was used to getting, so that she could tell us what she wanted; it saved us a lot of horror and tears, especially when we had to change up her diet and take her gluten-free for a little while while her stomach was recovering from 2+ years of antibiotics.