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Hi Kathy:

Sorry it's taken me so long to answer. Neurodevelopment (ND) therapy has been

around for over 30 years with NACD (www.nacd.org) and with ICAN . . . you can

find all the ICAN articles specific to DS on our BCDSC website www.bcdsc.org

(I recommend printing off all the articles and reading them fully and we now

have a 2 hour seminar on Neurodevelopment on our website). The reason, I

believe, that ND is not well known enough is that historically it's been up to

parents to implement the program without much outside help. I would like to see

this changed and is the reason for obtaining and putting all the information

onto our website. Some parents are very good at implementing program (for

various reasons) and others are not (also for various reasons). I see no reason

why we should not be able to hire people to do ND with our children just like

many hire people to do ABA with our children (or children with autism). I don't

have extended health benefits so it's not covered by insurance, however, since

we live in the province of BC and Whitney has autism she qualifies for autism

funding which has allowed us to hire a Behaviour Intervenionist to do the

program. For the last 2 months (approx.) Whitney has been getting 45 minutes of

ABA and 45 minutes of ND per day (5 days per week). That's all the time we can

squeeze in her day as she has afternoon Montessori and ballet a few times per

week. We are hoping in Sept. 2011 that she will get more of both ND and ABA at

her new school for grade one. Honestly, the thing that seems to have helped

Whitney's speech the most in the last year is the Customized Vitamin Therapy

from NutriChem (as put together by Kent MacLeod). Just my observances and those

of our Behaviour Interventionist.

Best regards,

lie Newell-Wagner, Director

the BC Down Syndrome Centre Society

www.bcdsc.org email: rosalie@...

Dear lie,

I'd like to hear more about the Neurodevelopment therapy you've done for

Whitney. What is it? I've never heard of it - is it covered by your

insurance? And how many hours/week of ABA does Whitney get? Has it been

helping her with her speech?

~ Kathy

(in France, moving to Illinois in 2011 - hopefully - with , 4 years

old DS/ASD and Genevieve, 2 years old NT and hubby, soon-to-be PhD.)

_____

From: [mailto: ] On Behalf

Of lie Newell-Wagner

Sent: Monday, January 10, 2011 6:48 PM

To: DS-Autism Group

Subject: ABA and speech needs

Hi Kathy:

My daughter will be age 6 in March. We started ABA therapy a few months ago

and had been doing Neurodevelopment since 16 months but only intensively and

consistently starting late Nov, 2009 when we hired a Behaviour

Interventionist to do Neurodevelopment with Whitney. Also the customized

vitamin

therapy that Whitney has now been on for 4 months (full protocol) has been I

believe the biggest factor in her most recent developments which is now

including expressive language like never before. We almost gave into the SLP

a few months ago who was suggesting we begin a form a PECS to get Whitney to

request things but still I did not want to until the Vitamin Therapy had

more time to work. So glad because it's now obvious that it's what she

needed to open things up for her to really move forward in all the therapies

that are being done. We (our family, Behaviour Interventionist,

school teachers, aid, SLP) are all being blown away by all the meaningful

words Whitney has been using in the last 6 - 8 weeks. She's learned alot

of words over the years from our neurodevelopment work but she was not using

them to ask for things and she was not into descriptive words like (it's

chilly, it's stuck) like she is now. She was not able to ask for things like

she has been the last 6 - 8 weeks so it's definitely coming. So her

receptive words were good but not her expressive.

Our girl has been chugging along faster and faster since she started even

the 1/2 dose of customized vitamin therapy on July 22nd. We started the full

protocol on September 8th. In the last 6 weeks she has been on fast forward

and going faster. Our Behaviour Interventionist commented to me a few days

ago she thinks Whitney is pulling out of the autism (which was a mild form

of PDD-NOS to start). Here is a sample of the things she said this week as

per

the BI's report to our Behaviour Consultant:

" Every day I come to the Wagner's home if I see Whitney I always

ask her " how are you " ? and on Tuesday morning she clearly repeated me and

asked me " how are you " ? She did the same thing on Tuesday at Kindergarten

she said " hi " to Val and asked her " how are you " ? During our play time with

our dolls and stuffed toys Whitney is learning to use short sentences to

talk

to these toys. This is where I hear the most short sentences being used

by Whitney on her own and also by repeating and copying me.

She has been saying sentences such as: " comb your hair, read a book, in

the box, go to sleep, (honey---I want more, - she said this on her own

when I asked her if she wanted honey) hat on, turn around, (its stuck -

she said this when she could not get her stickers off of a page), I'll

get it, close eyes, lights off, see you in morning.

When Whitney was looking in a book on Friday, she saw a picture

of a messy room and said on her own, " what a mess! "

I asked her on Friday " do you want milk, no or yes? " Whitney

answered " yes " .

I asked her, " do you want honey? " and Whitney answered " yes " .

and also said " honey ---I want more " .

I asked her " did you get your hair cut yesterday? " and then I said

" cut, cut " and Whitney repeated the words, cut, cut. Then on her

own she said " snip, snip. "

As of 4 months ago Whitney was not speaking in these kinds of action words

and in phrases/sentences like this. She is interacting with the other

school children more. When one little girl drew a picture for Whitney this

week in school, Whitney looked at the girl and said " that's nice " .

The Customized Vitamin Therapy was put together by Kent MacLeod at NutriChem

in Ottawa with the results from metabolic testing (blood and urine). I'm

fully convinced now that had we started this Vitamin Therapy just after age

2 (they recommend MSB+ until age 2) Whitney would be way ahead of where she

in now. But that's all hindsight now, I believe she is going to make up for

lost time over the next few years.

We are hoping to have the private school Whitney will attend in September

hire the Behaviour Interventionist (who already is working with Whitney) to

be her school aid and continue with both Neurodevelopment and ABA while at

school. It may include pullouts as required for the therapies to be

effective.

lie Newell-Wagner, Director

the BC Down Syndrome Centre Society

www.bcdsc.org email: rosalie@... <mailto:rosalie%40bcdsc.org>

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