CHERAB Foundation would
like to applaud and encourage the heroes: The people who step forward to
start or run a support group for apraxia! Because of these
people, parents and professionals can gain personal support and
information, which is invaluable to the parents and professionals who care
for apraxic children. Parents and Professionals may believe they
are out there all alone, or worse, believe nothing can be done about
their nonverbal child, or accept a possible misdiagnosis because of lack
awareness about apraxia. This page will be for anyone wishing
to start, or grow a group, or for anyone who would like to share any
heartwarming stories about an existing group. Even though there
is already a page
that lists the support group's basic information, I believe personal
stories will encourage the formation and growth of more support groups
/ nonprofits for apraxia all over the world. Most people don't believe
they can start a support group, until they find out other people, just
like them, stepped forward to become a hero for their child and
I'm so happy that we can all
work together to help the children! Insurance and school laws
do vary depending on where you live. If you need help, or would like to
help others, please let us know!
We welcome stories like the following from Rhonda. One of the three
parents who runs the ONLY support group in Canada...
Beth sent out a call for help in Canada via our
informational "late talker/apraxia" email list, and
Rhonda (who was a member of this list for the past year, even before
their group formed) answered. Rhonda, along with a few others,
is there to help anyone in Canada. They started the first,
and only support group for all of Canada. . I wish we could
all give them a standing ovation! Don't you agree?
If you want more information on the
Canadian support group, or from Rhonda (one of Canada's heroes,)
please email Rhonda
visit their website.
Reprinted with permission:
Subject: re: Help in Canada: To a parent seeking help from
I was forwarded your email from Lisa
Geng. I hope you've had a chance to visit our web page: there
are a lot of good Ontario-based resources listed there. I am not
sure where you are located, but we
are in the Toronto area.
In response to Lisa's comments, yes, school and insurance work
differently here that in the US. Apraxia is a very controversial
diagnosis here in Canada, and in most cases, the best you will get
is a diagnosis of "suspected apraxic". That said, it makes
it a little more difficult to get appropriate therapy and funding.
(Note from Lisa Geng: This is why Dr.
Agin is so awesome, because she started as an SLP, so she has
that knowledge and experience, but she is now an extremely respected
Developmental Pediatrician, and the Medical Director for
EI in New York, the largest in the United States, it's alittle
harder to ignore information from her. Raising awareness is a
positive way of letting people know the facts, which are more credible
There are differences in coverage,
deductibles and maximums depending on your insurance carrier. There
are also differences in
special ed/therapy provided to your child at school, depending upon
your province of residence and your particular school board. If
you are in Ontario, I am most knowledgeable about practices and procedures
here, and would be glad to give you more detailed info. I
am nominated to be a Special Ed Advisory Council rep for the York
Region District School board, so I know a bit about the in's and
out's of this particular board.
You mention that your son now receives
one hour of therapy weekly, but once he starts school, he loses
it? Why is that?
My daughter is 3 1/2, and I started
her with 3 mornings of school a week last March. She now goes 5
mornings, and she really enjoys it.
I too was afraid that she would be frustrated, but it is the
opposite. The kids accept her the way she is, and "take
care" of her. They know that she cannot always verbalize her
needs/wants, so they find other ways to communicate. Aren't kids
great? My point is, the socialization is SO important - don't
deprive your son of this. Also, most funded therapy is done
in a group (meaning 2 or more kids). One of the criteria for placement
is that your child can function in a group, and if you already have
him is a school situation, that's a good thing.
Please feel free to contact me. I look forward to hearing from you
in the near future.
Other words that may help from
Let me say first of all how very
much your website has helped me in my quest for knowledge! I remember when I first had
Maddie assessed, and the diagnosis was "oral-motor sequencing
issues". This was exactly one year ago.
I got on the internet and found
your site and Sharon's, and between the two of you, I got my
education in Apraxia 101. I
subscribed to the apraxia-kids
apraxianet egroup (thanks for that!),
late-talking kids egroup, phonological disorders egroup - you
In the spring, Barb posted a note
to Apraxia-kids asking for other parents in the Toronto area
looking to start a
support group. We had our first meeting in July. On Sunday we are
having our 4th meeting - it is basically the three of us - Barb,
Lindsay and myself. Although we are not a large group, I cannot
tell you how much we get from each other. In terms of programs
and resources available, our trials and tribulations and good
support from others who "get it". If one more person
tells me the Einstein didn't speak until he was five years old... Thanks
for the info and most of all, for your support!
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