[tri-med] Re: Any info on Dyspraxia?

----- Original Message ----- 
From: "Comparetto, Gary M."
> 1.  Anyone have any experience wiht Dyspraxia?  We'd love any
> recommendations you might have regarding documents, tips, whether your
> child was able to eventually speak, etc. =20
> =20
> 2. Elizabeth has been reading a bunch about Dyspraxia and the authors
> generally say that different techniques are required than the typical
> ones used with speech therapy; however, they never describe what these
> "different techniques" are.  Anyone have any suggestions in this area?

Dyspraxia - my favourite subject :-))
Dyspraxia is a learning disability and should therefore be treated by a 
specialist in the field, which is not your ordinary speech therapist 
usually. All speechies have a broad knowledge of the subject but the experts 
are truly experts.

Because its a learning disability it cannot be cured per sa but it can 
certainly be remediated. It certainly is VERY common in ANY child with a 
chromosomal anomaly. I often wonder if "our" kids are as retarded as the 
doctors think and how much is simply dyspraxia. After all if you can't 
regurgitate what you know its very difficult for anyone to measure IQ. If 
you have verbal dyspraxia you can't repeat what they want to hear and if you 
have limb dyspraxia you cant do what they want you to do.

Alex was diagnosed with "global dyspraxia" when he was 2 or 3 years old. (eg 
limb dyspraxia, oral motor dyspraxia etc etc) Each type had to be broken 
down and treated separately. What you are describing in Stephen could be 
simply verbal dyspraxia but it could also be complicated by ideational 
dyspraxia (similar to a stroke patient who cannot find the right words). The 
important thing at this stage is however to give him language, then you can 
see if their is ideational dyspraxia as well.

I took an unusual approach with Alex, it was slow and painful, but it 
worked. I was told that he would never speak, and he didn't for a long time. 
He finally started to put words together when he was 5. He will be 13 on 
Friday and I am constantly telling him to stop talking!!!

Penny took my ideas on board with Devon, and like Alex its been slow but it 
is working. One day I am confident that it will be Devon that we have to 
tell to stop talking :-))

So for what its worth here are a few general principles. If you want more 
detailed info of anything let me know. I am not a speech therapist, nor am I 
an expert in dyspraxia, but I have researched the topic very thoroughly and 
used all my OT training to help Alex (and other kids - I now run a "home 
program" for school children diagnosed with dyspraxia in conjunction with 
their speech therapist). For additional expert advise I recomment Apraxia 
Kids. I was a ground member of the Apraxia Kids list - its a heavy traffic 
email list though and I had to sign off as it was too much in the way of 
emails.

Firstly - start Stephen on long chain fatty acids if you havent already. I 
use Effalex which is no longer available in the US but there are plenty of 
alternatives. I use Effalex because thats the long chain fatty acids that 
were actually studied and found to be effective in treating dyspraxia. They 
are not a cure - but it helps big time. It takes about three months to see 
the full results but they are there. The younger you start the long chain 
fatty acids the better the results (thats why the FDA is putting it into 
infant formula), but research is now showing that it benefits all ages.

If Elizabeth wants to search that aspect look at the work of Jacqueline 
Stordy published in The Lancet 10 or so years ago. Its valid research, very 
valid, and they are now adding long chain fatty acids to baby formula. (I 
think I still have her early articles here if you cant find them). Some 
people still don't believe it, but then there were folk that didn't believe 
Pasteur either.

I jumped on the fatty acid wagon long before it was "popular" - Alex has 
gotten them every day since he was 5 years old. We had been working on his 
dyspraxia for years before that but he started actually saying words within 
3 months of starting the effalex - coincidence maybe but I don't think so as 
he regresses if I stop it.

Secondly think about what speech is - words, vocabulary, language, 
communication. It all comes naturally to most of us as children but for our 
children it doesn't. I went back to the very basics with Alex. He was 3 when 
I started teaching him to actually say all the sounds of speech. Its slow, 
its laborious but worth it. A speech therapist can help you with this - 
start with the basics, learn to round the mouth to say an "o", to blow a 
cotton ball across the table, to blow out a candle, to blow their nose. To 
stick their tongue out and move it up, to be able to lick peanut butter from 
the top of their lips, it all sounds weird but all movements vital to 
speech, and movements that need to be easy and automatic.

As I said most kids find this relatively easy to learn. Our kids don't, 
however it has to become easy for the next step to happen. Its like learning 
to walk. We walk by putting one foot in front of the other without thinking, 
but for someone learning to walk they have to think "lift foot, adjust 
weight to other leg, move foot forward, place foot down heel first, roll 
foot to toe, lift foot of other leg and repeat. Eventually with a lot of 
practice it becomes automatic like you and I, but it takes a LOT of 
practice. This is what you are doing with the sounds of speech.

The next step is to actually start stringing the sounds of speech together 
to start to form words. (eg t-e, th-a ) These should be done in a particular 
order and again your speech therapist can help you with these when you get 
to that stage. One of our Universities here has produced a brilliant 
dyspraxia program. I am sure that there must be US based ones. Australian 
ones are different to the US because of the accent but otherwise they are 
fairly similar.

All of this should be FUN and play based. It will all take time too - so 
prepare for the long haul.

But while you are doing all this there is another important step - and thats 
communication. Dyspraxia was still a hotly debated topic when I started 
treating Alex. Many therapists and doctors would (and some still do) tell 
you that it CAN'T be treated. I respectfully but strongly, disagree.

However I took the opinion that I didn't care HOW Alex communicated, just so 
long as he COULD communicate. I was very selfish in my motives with wanting 
him to be able to communicate effectively. I am an impatient person in some 
areas and bad behaviour is one of them. In most children with developmental 
issues bad behaviour stems directly from an inability to communicate. I was 
determined that wasn't going to happen with Alex.

So Alex didn't learn to speak first - his first language was "pointing", 
then exchanging, then signing and then he finally developed speech.

For Alex he had to learn what communication was - then he could apply that. 
Along the way he developed then best thing and that was his vocabulary. Even 
now Alex may still struggle with the words he wants to use when he talks to 
you but his vocabulary of words is phenomonal. (for Alex if something can be 
said in 10 words he will take 100 - but thats the ideational dyspraxia).

So as a 3 year old I made him point to what he wanted. That was hard as it 
was a lot easier to "read his mind". I then modelled and then got him to 
copy hand over hand (when he would still let me do hand over hand - they 
object to that very quickly).

This bit is very important - All the time I very carefully used language AND 
sign together. So if Alex pointed to say an ice cream, I would get to his 
level and point to the icecream and then say and sign icecream at the same 
time. Here in Australia we have a choice of sign systems - Signed English, 
Auslan or Makaton. Makaton is usually the sign language of choice at this 
stage because it uses key word signing not whole sentences. Its based on 
British sign language so is similar to Australian sign language, and very 
easy for a child to produce the signs as its a two handed sign language - 
but US sign language is very different (you didn't realise that sign 
language varied from country to country and even state to state) US sign 
language is a one handed system that depends greatly on the position of the 
hand and requires a lot of finger dexterity and accuracy. Not so good for 
our kids. Some US states are adopting the Makaton communication system, 
especially signing in special needs schools because its so much easier but 
some arent. Its not terribly expensive to buy the CD and book if you want to 
try. Makaton is also much easier for friends and family to learn than 
regular sign language as most just make sense (eg coffee is two hands 
grinding the coffee, drink is a rounded hand brought to the mouth and 
tilting the head back etc).

Makaton is actually a total communication system - its a sign language as 
well as symbols. Most people use the part they want but the total package is 
excellent.

Then we started on pictographs - pictures of things that he wanted. These 
were exact images, so if I used a picture of breakfast cereal it was his 
brand of breakfast cereal. If I was using for example "speech therapy" on 
his daily calender then it was a picture of HIS speech therapist, not just a 
person. PECS programs are a great source of these types of pictures. As are 
my first picture board books. When I did this digital cameras were a luxury 
and I spent hours trolling online supermarkets and google images for what I 
wanted.

Once you have gotten him used to the idea of actually communicating then you 
start the "exchange" of pictures to communicate. So instead of pointing to 
the picture of the icecream he takes it and gives it to you. When he hands 
you the picture you SAY and SIGN the object and then give it to him. Believe 
me they very quickly pick up favourite foods and sweets :-)) As he gets 
older you can stop using pictures and start using symbols - thats a 
developmental stage related to visual spatial awareness.

Everything in our house had a picture on it. I laminated a whole heap of 4 x 
4 pictures then got velcro dots and stuck them everywhere. We even had a 
daily / weekly calendar that had Alex's schgedule on it, not with words but 
pictures (and symbols). (the inability to organise is an inherent part of 
dyspraxia so its never to early to instill routine and order)

After a while you will find that rather than run off to get the picture he 
will start signing (or trying to approximate the word which is even better) 
This is more pronounced when he is out and you don't have a PECS card with 
you for what he wants.

Alex was about 5 when we got to this stage. He could use pointing, and 
pictures beautifully to get what he wanted. He could also say all of the 
sounds of speech but still had difficulty stringing them together to form 
words. He could but it was hard and so he wasn't terribly motivated. Thats 
when I decided to make or break.

My sign language is basic and I wanted Alex fluent for school - as I said 
the vocab was there I needed to expand it beyond my primitive signing. Thats 
when I enrolled him in a school for deaf. The school was carefully chosen 
for their practice of signing and speaking at the same time. They didn't 
just sign the key words though, they signed the entire sentence. (the 
difference between main stream and special needs schools)

Within 3 months he was signing a lot more fluently but by 6 months he 
decided that signing was cumbersome and that the teachers would listen if he 
tried to say the word as well. By the end of the school year Alex was 
speaking fluently enough to be enrolled in a mainstream school and we 
dropped the signing and the pointing. (signing, pointing and picture 
exchange used together is called total communication)

The amazing thing was that when Alex was able to finally start putting words 
together it was like opening a floodgate. All the years of working on 
communication paid off - his vocabulary was a lot better than I had realised 
and all those words just came pouring out.

It took many years for it not to be painful to listen to Alex speaking but 
it has happened and he can even speak quite well on the phone (provided he 
has a chance to rehearse what he needs to say). OK so sometimes its still 
painful but we are getting there.

Again this all takes very specific learning and practice - these days if I 
need to call and make an appointment with the doctor Alex does it. I have 
primed the receptionist to be patient listening to him and its helping his 
confidence a lot. (I often have to re-ring and clarify but thats beside the 
point). On the weekend he even spoke to the person at the bank and activated 
his own card for his bank account!!!!) Another milestone for Alex he now has 
a card instead of bank passbook for his bank account!!! Seemed appropriate 
now that he is almost 13 (sob). I have also joined a group here called 
CAUS - an advocacy group for people who have speech problems.

I will send you my telephone number off list and you can ring and talk to 
Alex yourself. I am sooooo proud of him. I remember the speech pathologist 
telling me that Alex wasn't really dyspraxic he was retarded. Then a few 
years later after my home "program" she agreed to treat him for the 
dyspraxia (still with reservation). I was fortunate enough to run into her 
at the shops a few years ago and took great delight in watching her listen 
to Alex regale the life cycle of his beloved stick insects for 15 minutes 
without missing a beat and using some very long and complex words. Revenge 
is sweet sometimes :-))

Dyspraxia may not be able to be cured, but you can work with it and Stephen 
can develop strategies around the problem. Its hard work but never say 
never!!!!

Alex has been the focus of a few studies here because he has Agenesis of the 
Corpus Callosum plus CAPD. (pretty common if you have ACC). He is of 
interest because of how I taught him  and because he now speaks so well and 
has surmounted so many obstacles to get there. Interestingly his scans and 
EEG's show that he has developed pathways in his brain to speak and listen 
that are not normally used. (eg he uses some parts of his brain normally 
reserved for vision to listen and some parts for speaking that are normally 
used for  listening - which typically in deaf children these parts of the 
brain just stop working) Most of us use less than a 10th of our brains 
ability, Alex has learnt to use some of that other 90% to develop other 
pathways to get around the dyspraxia.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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