Re: Questions Re 3y 9M girl with Apraxia and Drawing' writing skills

January 25, 2011

Just from reading this quickly it sounds to me like you have not had the benefit

of seeing a professional who really understands today's apraxia. I mean even

the fact they used the name " CAS " Please get that off your child's permanent

school/insurance records because it stands for " childhood apraxia of speech "

This group is over 10 years old and I started it when my son was 3 and we had

older members even then I can tell you that while most overcome apraxia (or

dyspraxia) it can be noticeable in some cases in teens and adults. When my son

was first diagnosed with apraxia/dyspraxia in 1999 the name they used then was

DAS or developmental apraxia of speech and that name was horrific too! I have

an example in the archives where a very speech impaired adult man of twenty

something called me for help and said " I have developmental apraxia of speech "

and I said " I can barely understand you but think you just said you have

developmental apraxia of speech? Don't tell people you have developmental

anything because you are 20 something and people are going to assume you are

mentally retarded from the way you speak " Yes at first he got really POd at me

-but for sure he stopped using that also ridiculous name.

So find a professional who at least knows to diagnose your child with either

apraxia or dyspraxia- and it can affect speech, body, even breath control. In

fact dyspraxia which is the name used in the UK used to be called the " clumsy

child syndrome " It's not that your child is a klutz - she may have a

neurologically based impairment that makes it difficult for her to do all she is

pushing herself to do to keep up so that people don't look at her as a klutz.

The writing skills are another sign of motor problems. There are many

strategies and therapies that typically the OT (occupational therapist) will

work with your child on to help improve this area. Apraxia or dyspraxia in

themselves are not receptive or cognitive impairments so they are bright and

know what is expected of them- but you will find that unless she gets

appropriate therapies now that these issues will persist into school years. The

older she becomes the more that will be expected of her- and she won't be able

to keep up at some point.

What state or country are you in? Perhaps we can help you find another

professional to evaluate your daughter to help her receive appropriate therapies

now prior to starting school.

About NV...based on what you wrote you may want to secure another evaluation

prior to raising the dosage -but one way or another after that I highly suggest

you figure out a creative way to get it in. The results we are seeing address

motor skills as just in part http://pursuitofresearch.org/pursuit-of-research/

Here are some serving suggestions

http://pursuitofresearch.org/products/nutriiveda/nv-serving-suggestions/

You are doing the right thing in working on this now -you want to help her

resolve as much as possible prior to kindergarten. Another thing is I would

delay kindergarten until she is 6 and keep her in a multisensory enriched

preschool an extra year to provide her with that extra year of developmental

time and therapy.

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January 25, 2011

Hi ,

I am in California (Bay Area). The developmemtal pediatrician we saw was Dr

Heidi Feldman at Lucille Packard (Stanford). I know you disagree with Apraxia

being called CAS (I used the abbreviation because I know you don't like this

label but as it was her official diagnosis I thought I'd best use it !). I

believe she uses the CAS name because she is an advisor to CASNA. In her initial

assessment she did also say she thought Niamh had some issues with breath

control (but I think that was just because she gets really quiet in her talking

when she feels shy, she does this in ST too sometimes, but is capable of talking

pretty loud when arguing with her brothers !)

It is the fact that she looks clumsy/ klutzy that makes me think she has global

dyspraxia. I really don't believe she just " doesn't pay attention " . When she was

in early start her therapists were amazed that she could easily climb the

climbing wall in the OT gym (this wasn't something they were working on in class

she'd just go to it and start climbing), but she couldn't walk down the corridor

between gym and her classroom without falling over. She literally is pretty much

constantly covered in bruises on her legs from falling (but she likes to wear

leggings all the time, so people don't see the bruises). She also has real

problems with the balance beam in gym (when she was taking gym class) - most

days she falls off (its only 6 inches high) every couple of steps, but some days

she does better.

She also loves to play soccer (big brother plays) and is great with dribbling

the ball, but seems unable to coordinate enough to actually kick it more than 3

feet when she is in class.

With the writing skills do you think this is something to address with a dev ped

or do I need to get a private OT assessment too ? I want to get all my evals

done before approaching the school district re services (her annual IEP is due

early May). Is this something I should be fighting the school district to

provide her with OT for ? or I should I have to expect to do it privately (our

insurance won't even cover ST with an Apraxia dx so I don't expect it to cover

OT).

I will keep trying with the NV, I did manage to get a whole scoop in each day

for a few weeks, but then she seemed to rebel against the taste and wouldn't

take the foods I hide it in at all for a few weeks. We've just got back up to

1/2 scoop consistently. At the moment the only food I can give it to her in

reliably is cereal. I can get a little if it she has waffle or pancake for

breakfast, but not much or it stops her eating. I have just got her to start

eating chocolate pudding (with choc NV), but I don't want to give it every day

or I think she'll lose interest again (now she sees it as a treat). I can also

get a little in yoghurt but again not much or she won't eat it. I can't get her

to drink it in anything. These days she won't drink milk at all (and I haven't

got her to drink any kind of choc milk even without NV she turns her nose up),

also she used to drink smoothies before I tried adding NV, now she won't drink

them at all even undoctored ones.

Thanks again,

>

> Just from reading this quickly it sounds to me like you have not had the

benefit of seeing a professional who really understands today's apraxia. I mean

even the fact they used the name " CAS " Please get that off your child's

permanent school/insurance records because it stands for " childhood apraxia of

speech "

>

> This group is over 10 years old and I started it when my son was 3 and we had