NEW, introduction (long)

[Guest guest]

Hi,

I'm Wendi, mom of 2 yr 7 month old triplets, , Luke and

Madeline. This is going to be long, sorry! Hope I don't lose

everyone. I'm so glad to find you all!

Questions (in case I lose you with the length of the email!): do a lot of

kids with apraxia also have sensory integration dysfunction? anyone hear

of " somatic dyspraxia " ? How often does a child with apraxia need speech

therapy (2 of my kids are getting it 2x a week, but the ST refuses to try

PECS and is not trained in oral-motor issues). I've ordered " Mouth

Madness " but it's on backorder...any other ideas?

First off, all three kids have Sensory Integration Dysfunction and are

suspected of being on the PDD/Autism spectrum, and/or ADHD. A friend had

her son evaluated recently for autism, and was told her son isn't autistic,

he's apraxic. So this got me looking into apraxia. At the same time, one

of our OT's mentioned one daughter has " somatic dyspraxia " , and I started

looking into dyspraxia as well. I asked the other OT about this, she said

my other 2 kids have it as well. Then I asked about verbal and oral

apraxia, and she feels the 2 she treats both have verbal apraxia and my

daughter possibly has oral apraxia. The OT started trying to figure out if

her feeding problems are oral-motor concerns because the speech teacher

refuses to. They've been going back and forth over who's responsible for 3

months, (neither of them have any experience with oral-motor

concerns). Speech thinks it's sensory, OT thinks it's oral-motor. I think

it's a little of both! All three kids verbal stim almost constantly.

OK, . She is suspected of having Asperger's Syndrome and has SID

and fine motor delay, and the OT just told me she probably should get a PT

eval. OT thinks she's dyspraxic. She also has reflux and is on Zantac,

and suspected of aspirating (ENT appt next month). I'll just tell you

about her speech though. She hit all the milestones early, but later I

realized that her longer sentences are delayed echolalia. She also has

immediate echolalia. Her speech is strange, because sometimes she can

speak well, and other times it's all babble, like she's speaking another

language, even when she answers a question (with a real word mixed in at

times). Some days are all babble. Her speech and comprehension are very

literal at times. But she tested at over 4 yrs receptively and

expressively (the SP took her time to get past the babble and test her

" real " words). She's very confusing! When she's not speaking in real

words, she's babbling or verbal stimming (humming, saying the same sound

over and over).

Luke: SID, fine motor, gross motor, social skills, cognitive and S & L

delay, suspected being somewhere on the autism spectrum by me, the

Developmental Pediatrician (who only observed him for 10 minutes - yes I'm

seeking a second opinion!) thinks he's ADHD/SID/Learning Disability combo

(says this " seems " like autism, but isn't). She diagnosed him with

developmental delay and dev language disorder. The OT thinks he's

dyspraxic and verbal apraxia. He has a sort of echolalia that I haven't

seen anywhere. He narrates videos, including all environmental noises, as

they run, and can do it fairly well the second time he sees a video. He

does not repeat anything from the video at other times. He also has

immediate echolalia. He CANNOT repeat any words on demand (if you say " say

-- " )! You can trick him into doing it with the echolalia - but it doesn't

really help because he has no idea what the meaning is. The problem with

this is that he tests well on parent checklist portions since he has a high

echolalic vocabulary, but it's not at all functional! We know he can form

the sounds, BUT he cannot communicate. He lost all words at about 20

months. We started a brushing program for the SID about 4 months ago, and

suddenly he added a few words and started pointing, but has lost a lot of

them again within the past month and his pointing is not specific any

more. What I mean is, he'll point and say " dat " as if he wants something

where he's pointing, but when you give it to him, that isn't what he wanted

at all (can tell by the tantrum). He really seems to be trying to

communicate verbally, but nobody can understand him. It's like he's

speaking another language. He's almost constantly tantruming because he

can't communicate. Even his " made up " word for things is not consistent,

I've tried tracking them. Also the few words he still has don't mean what

they are supposed to, even receptively. For example, when asked to point

to a clock (something he used to be able to do without hesitation) he will

point to a phone, or a picture of an animal, etc. Once in a while his

words do still mean what they are supposed to, but it's very

inconsistent. And very confusing since you're never sure what he really

means! Sometimes I think this is worse than not being able to say a word

at all! Something like " copter " means a whole list of things (helicopter,

lamp shade, clock, fire truck, calendar, fan, there's more i can't think

of). I'm not sure this is verbal apraxia...I'm going to start looking into

aphasia - which is even scarier! He doesn't know that I'm not a part of

him, though he seems to know other people are not. I do not have a name

receptively. He can point to everyone else but me. " mommy " is a word he

knew for about 2 weeks (would scream it when I walked in the room) and

lost. He's either babbling, crying, whining or screaming most of the

time. I can't blame him, I'd be very frustrated in his situation too! Any

other time he's verbal stimming.

Just a note: the babbling does NOT seem to be " twin talk " because they

don't talk to each other.

Madeline: SID, fine motor, social skills, cognitive, and S & L delays,

diagnosed by the same DP (also a 10 minute observation) as DD and Dev

language disorder - probable ADHD/SID/LD. I've suspected PDD spectrum for

her as well but am having second thoughts. Her social skills have improved

a lot lately. OT thinks she needs a PT eval, and is dyspraxic and verbal

and oral apraxic. This makes so much sense for her from what I've been

reading on apraxia! She seems like an apraxia poster child. (BTW, she

could also be an SID poster child) She is 2 yrs 7 months and can't

chew. She learned how to bite a couple of weeks ago. She didn't even say

a sound till after 15 months old. Then for a year it was just " da da da da

da " . ST started at 21 months, but it didn't help until we started brushing

(at 27 months). She started doing some babbling after that. She's slowly

saying some words, but they all sound the same. I've been making a list

(phonetic/meaning) and it's up to 22 words now. The only way I can tell

the difference is if she points or makes an environmental noise when ask

" what does it say? " (she can do a few animals - cat, dog and duck all sound

the same but she can approximate the noise they make). The two words she

can say correctly are Mommy (just added a few days ago!) and NO. The

biggest problem with oral-motor therapy so far is that most of the stuff

that's used makes a noise she's afraid of (auditory sensory

issues)! Straws, blowers, etc, all make a noise. The OT is picking up

ideas where she works part time, so it's not even a " ok that didn't work,

let's try this " situation. And yes, she does an awful lot of verbal

stimming too (mostly " AHHHHahhhAHHHahh " while bouncing her head from side

to side). VERY noisy around my house! The strangest thing is that she'll

use some of her words in 2-word combos! " AHH Dahh " is " all done " . " EEE

GUG " is " big hug " . But, the way she says them, it's as if these words were

one word and she never used one of the words alone. She also does NOT get

frustrated most of the time when we don't understand her.

Sorry so long, for anyone who made it this far - THANKS!!!

Wendi