CHICAGO TRIBUNE September 22, 2015
Volunteers and organizers of a previous Apraxia Walk, sponsored by 'The Apraxia Connection.' (Posted by Claudia Parker, Community Contributor)
Community Contributor Claudia Parker
Special needs families have been left scrambling to find alternate resources since the Illinois state budget crisis forced funding cuts on countless disability programs.
However, The Apraxia Connection (TAC) has a surplus and are looking for families in need to give grants to. TAC was established as a 501(c)3 public charity organization in 2012 by three Chicagoland mothers of children with varied degrees of apraxia of speech, global apraxia, and associated disorders. Two of its co-founders Michele Kowalski, of LaGrange and Barbara Matt of Westmont, said their mission is to unlock the voice of people with Apraxia.
My four year old daughter, Rhonda-Rene was a recipient of TAC's One Wish Grant during Christmas of 2014. Her wish was to visit Nancy Kaufman, a nationally known expert in speech and language disorders. Rhonda-Rene suffers from severe Childhood Apraxia of Speech (CAS). She could only approximate six words before seeing Nancy Kaufman. However, as early as two months after visiting Nancy at Kaufman Children's Center in Michigan, her approximations increased significantly.
The busy moms behind this generosity said it wasn't their intention to establish TAC, that's just the way fate would have it. Michele- a special education attorney with her own practice, http://jilldanielslaw.com/ and husband Dave, have four children, their eldest; Alexandra (12) has CAS. She was diagnosed at the age of two and with lots of therapy, Michele said Alex began speaking by age four "She hasn't stopped since," said Michele.
Barbara and her husband Andrew have three sons, and their youngest two, Ethan (11) and George (10) both have CAS. "When you first get the diagnosis it's hard." Barbara said, "I teach third grade and I remember watching my students engaged in conversation and thinking, 'My sons are never going to do that'."
But they do! Both, Ethan and George are now verbal communicators.
"As awareness of apraxia grows, so does the demand for a network of local support. One of the biggest misconceptions of CAS is that children diagnosed will never learn to speak," said Michele.
Research has shown with the right therapy and caregiver involvement, things will turn around.
The Childhood Apraxia of Speech Association of North America (CASNA) is considered by some, the largest non-profit organization for Apraxia. Barbara and Michele said after attending a CASNA conference and Apraxia Walk in Pennsylvania, they volunteered to host one locally.
"It turned into an annual event. Our 7th Apraxia Walk is October, 17th." Michele said, "2014 was a great success, with nearly 800 participants we raised 70 thousand dollars."
Barbara explained, "With those funds, TAC has been able to connect neighborhood resources and information about CAS and associated disorders with families and other professionals who need them. Michele agreed saying, "We aim to reduce the high cost of therapy and therapeutic tools by offering families our One Wish Grants. We approved nine last Christmas."
The bad news is, only 9 families applied. With a little more awareness, TAC could have helped even more.
Bob and Sharon Rosenberger of Elgin are third time One Wish Grant recipients for their 16 year old son, Kurtis, who has Down syndrome and CAS. Sharon, a former speech and language pathologist (SLP) herself said Kurtis requires a specialized method of speech therapy called the PROMPT method, Prompts for Restructuring Oral Muscular Phonetic Targets. "I've seen Kurtis blossom since using PROMPT. It's difficult finding an SLP trained in PROMPT. We drive a long distance for service and it's only partially covered under our insurance." Sharon said, "I was referred to TAC by the Windy City Apraxia Network. The application was simple and receiving a partial grant was definitely helpful."
TAC started helping Steve and Kelly Biesek of Mount Prospect eight months ago. Their six year old daughter, Kelsey has CAS. "My speech therapist, Kate, told me about TAC. I was drawn to them for the emotional support." Kelsey said, "I needed to be linked to other families who understood our challenge."
Kelly said when a change in their insurance caused them to lose coverage for Kelsey's speech therapy; TAC provided their family with a One Wish Grant to offset their out-of-pocket cost while they looked for an alternate insurance plan.
"The Apraxia Connection is here because we want families to know they're not alone." said Barbara. Michele followed with, "That's why we also provide monthly support meetings. If you have a need, we'd like to help."
TAC serves the entire Chicago-area communities and surrounding states, visithttp://www.theapraxiaconnection.org/
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