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

Hi,

Thanks so much Karen for this great information. Thanks to Catherine
and Katy too.  I am so thankful for this list - it has been and
continues to be a blessing to Stephen and our whole family.  I am
constantly amazed and proud of all the parents on this list and the
love that they have for our children - what an encouragement that is!

Thanks
Gary

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx] On Behalf Of Karen Schuler
Sent: Sunday, September 16, 2007 10:26 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Any info on Dyspraxia?

----- Original Message -----=20
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. =3D20
> =3D20
> 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=20
usually. All speechies have a broad knowledge of the subject but the
experts=20
are truly experts.

Because its a learning disability it cannot be cured per sa but it can=20
certainly be remediated. It certainly is VERY common in ANY child with
a=20
chromosomal anomaly. I often wonder if "our" kids are as retarded as
the=20
doctors think and how much is simply dyspraxia. After all if you can't=20
regurgitate what you know its very difficult for anyone to measure IQ.
If=20
you have verbal dyspraxia you can't repeat what they want to hear and
if you=20
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=20
limb dyspraxia, oral motor dyspraxia etc etc) Each type had to be
broken=20
down and treated separately. What you are describing in Stephen could
be=20
simply verbal dyspraxia but it could also be complicated by ideational=20
dyspraxia (similar to a stroke patient who cannot find the right
words). The=20
important thing at this stage is however to give him language, then you
can=20
see if their is ideational dyspraxia as well.

I took an unusual approach with Alex, it was slow and painful, but it=20
worked. I was told that he would never speak, and he didn't for a long
time.=20
He finally started to put words together when he was 5. He will be 13
on=20
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=20
is working. One day I am confident that it will be Devon that we have
to=20
tell to stop talking :-))

So for what its worth here are a few general principles. If you want
more=20
detailed info of anything let me know. I am not a speech therapist, nor
am I=20
an expert in dyspraxia, but I have researched the topic very thoroughly
and=20
used all my OT training to help Alex (and other kids - I now run a
"home=20
program" for school children diagnosed with dyspraxia in conjunction
with=20
their speech therapist). For additional expert advise I recomment
Apraxia=20
Kids. I was a ground member of the Apraxia Kids list - its a heavy
traffic=20
email list though and I had to sign off as it was too much in the way
of=20
emails.

Firstly - start Stephen on long chain fatty acids if you havent
already. I=20
use Effalex which is no longer available in the US but there are plenty
of=20
alternatives. I use Effalex because thats the long chain fatty acids
that=20
were actually studied and found to be effective in treating dyspraxia.
They=20
are not a cure - but it helps big time. It takes about three months to
see=20
the full results but they are there. The younger you start the long
chain=20
fatty acids the better the results (thats why the FDA is putting it
into=20
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=20
valid, and they are now adding long chain fatty acids to baby formula.
(I=20
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=20
Pasteur either.

I jumped on the fatty acid wagon long before it was "popular" - Alex
has=20
gotten them every day since he was 5 years old. We had been working on
his=20
dyspraxia for years before that but he started actually saying words
within=20
3 months of starting the effalex - coincidence maybe but I don't think
so as=20
he regresses if I stop it.

Secondly think about what speech is - words, vocabulary, language,=20
communication. It all comes naturally to most of us as children but for
our=20
children it doesn't. I went back to the very basics with Alex. He was 3
when=20
I started teaching him to actually say all the sounds of speech. Its
slow,=20
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=20
cotton ball across the table, to blow out a candle, to blow their nose.
To=20
stick their tongue out and move it up, to be able to lick peanut butter
from=20
the top of their lips, it all sounds weird but all movements vital to=20
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=20
to walk. We walk by putting one foot in front of the other without
thinking,=20
but for someone learning to walk they have to think "lift foot, adjust=20
weight to other leg, move foot forward, place foot down heel first,
roll=20
foot to toe, lift foot of other leg and repeat. Eventually with a lot
of=20
practice it becomes automatic like you and I, but it takes a LOT of=20
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=20
to start to form words. (eg t-e, th-a ) These should be done in a
particular=20
order and again your speech therapist can help you with these when you
get=20
to that stage. One of our Universities here has produced a brilliant=20
dyspraxia program. I am sure that there must be US based ones.
Australian=20
ones are different to the US because of the accent but otherwise they
are=20
fairly similar.

All of this should be FUN and play based. It will all take time too -
so=20
prepare for the long haul.

But while you are doing all this there is another important step - and
thats=20
communication. Dyspraxia was still a hotly debated topic when I started

treating Alex. Many therapists and doctors would (and some still do)
tell=20
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=20
long as he COULD communicate. I was very selfish in my motives with
wanting=20
him to be able to communicate effectively. I am an impatient person in
some=20
areas and bad behaviour is one of them. In most children with
developmental=20
issues bad behaviour stems directly from an inability to communicate. I
was=20
determined that wasn't going to happen with Alex.

So Alex didn't learn to speak first - his first language was
"pointing",=20
then exchanging, then signing and then he finally developed speech.

For Alex he had to learn what communication was - then he could apply
that.=20
Along the way he developed then best thing and that was his vocabulary.
Even=20
now Alex may still struggle with the words he wants to use when he
talks to=20
you but his vocabulary of words is phenomonal. (for Alex if something
can be=20
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=20
was a lot easier to "read his mind". I then modelled and then got him
to=20
copy hand over hand (when he would still let me do hand over hand -
they=20
object to that very quickly).

This bit is very important - All the time I very carefully used
language AND=20
sign together. So if Alex pointed to say an ice cream, I would get to
his=20
level and point to the icecream and then say and sign icecream at the
same=20
time. Here in Australia we have a choice of sign systems - Signed
English,=20
Auslan or Makaton. Makaton is usually the sign language of choice at
this=20
stage because it uses key word signing not whole sentences. Its based
on=20
British sign language so is similar to Australian sign language, and
very=20
easy for a child to produce the signs as its a two handed sign language
-=20
but US sign language is very different (you didn't realise that sign=20
language varied from country to country and even state to state) US
sign=20
language is a one handed system that depends greatly on the position of
the=20
hand and requires a lot of finger dexterity and accuracy. Not so good
for=20
our kids. Some US states are adopting the Makaton communication system,

especially signing in special needs schools because its so much easier
but=20
some arent. Its not terribly expensive to buy the CD and book if you
want to=20
try. Makaton is also much easier for friends and family to learn than=20
regular sign language as most just make sense (eg coffee is two hands=20
grinding the coffee, drink is a rounded hand brought to the mouth and=20
tilting the head back etc).

Makaton is actually a total communication system - its a sign language
as=20
well as symbols. Most people use the part they want but the total
package is=20
excellent.

Then we started on pictographs - pictures of things that he wanted.
These=20
were exact images, so if I used a picture of breakfast cereal it was
his=20
brand of breakfast cereal. If I was using for example "speech therapy"
on=20
his daily calender then it was a picture of HIS speech therapist, not
just a=20
person. PECS programs are a great source of these types of pictures. As
are=20
my first picture board books. When I did this digital cameras were a
luxury=20
and I spent hours trolling online supermarkets and google images for
what I=20
wanted.

Once you have gotten him used to the idea of actually communicating
then you=20
start the "exchange" of pictures to communicate. So instead of pointing
to=20
the picture of the icecream he takes it and gives it to you. When he
hands=20
you the picture you SAY and SIGN the object and then give it to him.
Believe=20
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=20
developmental stage related to visual spatial awareness.

Everything in our house had a picture on it. I laminated a whole heap
of 4 x=20
4 pictures then got velcro dots and stuck them everywhere. We even had
a=20
daily / weekly calendar that had Alex's schgedule on it, not with words
but=20
pictures (and symbols). (the inability to organise is an inherent part
of=20
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=20
will start signing (or trying to approximate the word which is even
better)=20
This is more pronounced when he is out and you don't have a PECS card
with=20
you for what he wants.

Alex was about 5 when we got to this stage. He could use pointing, and=20
pictures beautifully to get what he wanted. He could also say all of
the=20
sounds of speech but still had difficulty stringing them together to
form=20
words. He could but it was hard and so he wasn't terribly motivated.
Thats=20
when I decided to make or break.

My sign language is basic and I wanted Alex fluent for school - as I
said=20
the vocab was there I needed to expand it beyond my primitive signing.
Thats=20
when I enrolled him in a school for deaf. The school was carefully
chosen=20
for their practice of signing and speaking at the same time. They
didn't=20
just sign the key words though, they signed the entire sentence. (the=20
difference between main stream and special needs schools)

Within 3 months he was signing a lot more fluently but by 6 months he=20
decided that signing was cumbersome and that the teachers would listen
if he=20
tried to say the word as well. By the end of the school year Alex was=20
speaking fluently enough to be enrolled in a mainstream school and we=20
dropped the signing and the pointing. (signing, pointing and picture=20
exchange used together is called total communication)

The amazing thing was that when Alex was able to finally start putting
words=20
together it was like opening a floodgate. All the years of working on=20
communication paid off - his vocabulary was a lot better than I had
realised=20
and all those words just came pouring out.

It took many years for it not to be painful to listen to Alex speaking
but=20
it has happened and he can even speak quite well on the phone (provided
he=20
has a chance to rehearse what he needs to say). OK so sometimes its
still=20
painful but we are getting there.

Again this all takes very specific learning and practice - these days
if I=20
need to call and make an appointment with the doctor Alex does it. I
have=20
primed the receptionist to be patient listening to him and its helping
his=20
confidence a lot. (I often have to re-ring and clarify but thats beside
the=20
point). On the weekend he even spoke to the person at the bank and
activated=20
his own card for his bank account!!!!) Another milestone for Alex he
now has=20
a card instead of bank passbook for his bank account!!! Seemed
appropriate=20
now that he is almost 13 (sob). I have also joined a group here called=20
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=20
Alex yourself. I am sooooo proud of him. I remember the speech
pathologist=20
telling me that Alex wasn't really dyspraxic he was retarded. Then a
few=20
years later after my home "program" she agreed to treat him for the=20
dyspraxia (still with reservation). I was fortunate enough to run into
her=20
at the shops a few years ago and took great delight in watching her
listen=20
to Alex regale the life cycle of his beloved stick insects for 15
minutes=20
without missing a beat and using some very long and complex words.
Revenge=20
is sweet sometimes :-))

Dyspraxia may not be able to be cured, but you can work with it and
Stephen=20
can develop strategies around the problem. Its hard work but never say=20
never!!!!

Alex has been the focus of a few studies here because he has Agenesis
of the=20
Corpus Callosum plus CAPD. (pretty common if you have ACC). He is of=20
interest because of how I taught him  and because he now speaks so well
and=20
has surmounted so many obstacles to get there. Interestingly his scans
and=20
EEG's show that he has developed pathways in his brain to speak and
listen=20
that are not normally used. (eg he uses some parts of his brain
normally=20
reserved for vision to listen and some parts for speaking that are
normally=20
used for  listening - which typically in deaf children these parts of
the=20
brain just stop working) Most of us use less than a 10th of our brains=20
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
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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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