Nico's diagnoses.
Sep. 22nd, 2010 01:26 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishWhen 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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no subject
Date: 2010-09-24 12:25 am (UTC)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.
no subject
Date: 2010-09-24 02:36 am (UTC)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.
no subject
Date: 2010-09-24 02:48 am (UTC)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.