To the heroes, starting or running a support group for apraxia

Cherab Foundation would like to applaud and encourage the heroes: The people who step forward to start or run a support group for apraxia!

How To Start A Support Group for Apraxia, Autism, Epilepsy etc.

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 of 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 others.

I’m so happy that we can all work together to help the children! Insurance and School laws do vary from US to elsewhere. 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, or visit their website.

Reprinted with permission:
Subject: re: Help in Canada: To a parent seeking help from Canada

Hi Beth,

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. We are meeting this Sunday in Richmond Hill. I know it’s short notice, but if you are interested, please give me a call. (905) 780-1489

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 than opinions.)

There are differences in coverage and 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, either at the above number or by email. I look forward to hearing from you in the near future.

Rhonda Jacobson Cherry

Other words that may help from Rhonda:

Hi Lisa,
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 listserv, children’s apraxianet egroup (thanks for that!), late-talking kids egroup, phonological disorders egroup – you name it.

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 old 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!