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.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2010-09-23 06:48 pm (UTC)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)
no subject
Date: 2010-09-23 06:50 pm (UTC)no subject
Date: 2010-09-23 07:11 pm (UTC)no subject
Date: 2010-09-24 02:51 am (UTC)