I am excited to share with you Chicago mom, Holly Olmsted-Hickey who started the Windy City Apraxia Network about 12 years ago. Holly was kind enough to answer my questions about her apraxia journey, which I think you will find both resourceful and uplifting. Many thanks, Holly for your contributtions to the “apraxia world!”
L4K: Before we get into the nitty-gritty details of apraxia, can you tell us a bit about you as a person? In my “former life” before kids, I was in the field of advertising and public relations. I stopped working outside our home after I had Jack and ran a communication consulting business with a friend for a while, but that became too much with all that was going on with Jack. I’ve freelanced on and off since then, but just started working with Dawn Villarreal at One Place for Special Needs (www.oneplaceforspecialneeds.com) as the Special Needs Development Manager. I also run The Windy City/Chicagoland Apraxia Network helping families and those affected by children with apraxia (and associated issues) find their way. My passion is helping people navigate this crazy world of special needs….and chocolate.
L4K: You have a son with CAS, can you tell us a bit more about him–when you learned about apraxia and your first thoughts on the diagnosis? Had you ever heard of apraxia back then? My oldest, Jack, was diagnosed with “probable apraxia” at the age of 20 months. We had a three page speech report full of red flags and no knowledge at all about apraxia. I was devastated and immediately went into fifth gear doing research and asking questions. Even the speech therapist that evaluated Jack didn’t have a lot of information to pass along. It was tough starting out. Thankfully when my second child, Connor, was profiling like Jack at the same age, I was able to get him into early intervention quickly and get to business.
L4K: What advice would you give to parents who are just learning the diagnosis for the first time? Trust your gut instincts and don’t be afraid to ask questions — LOTS of questions. I feel parents should be empowered with the knowledge and understanding of what goes on with their child whether they need to put a bandaid on a scrape or understand why their child needs a speech therapist.
L4K: Can you tell us how you formed the group, Windy City Apraxia? What a wonderful–yet huge undertaking–you took upon yourself to help others with CAS. The group originally began on the Apraxia-Kids list way back in 1999. We had about six to eight families that met consistently each month or two for about a year. We met at each other’s homes or at parks or restaurants with our families. Since then, we have grown to almost 450 members from all over Chicagoland including downstate Illinois, eastern Iowa, southern Wisconsin, western Michigan and northern Indiana. I’m happy that I can help provide resources and pave a pathway for families to walk and learn during their journey. There is still so much we want (and NEED!) to do to create awareness and education of apraxia in Chicagoland. “Talking the talk” as we “walk the walk” is what this group is all about.
L4K: If someone wanted to learn more about Windy City Apraxia, how would they go about it? The Windy City website offers a great deal of support, resources and answers to many questions about apraxia and associated autistic spectrum types of issues. We have a resourceful links and files with listings of area therapists and professionals who are familiar with apraxia and recommended only by families with children who have apraxia. We also have an active discussion list where parents can ask questions about apraxia and their child’s developmental issues and get answers from peers who are walking the same path. You can find The Windy City/Chicagaoland Apraxia Network at: http://groups.yahoo.com/group/windycityapraxia/ or by contacting me personally at firstname.lastname@example.org. We are also starting another open forum on the One Place for Special Needs website at: www.oneplaceforspecialneeds.com. If you look in the bottom right corner, our new group is a Featured Group!
L4K: What goals and plans do you have for the future of Windy City Apraxia? Chicagoland will have A LOT going on in 2011 regarding apraxia awareness and education: First, through a generous grant awarded by Sam’s Club, our group is planning an event later this spring/early summer to bring families, private speech therapists and school speech therapists together to discuss apraxia. We also have our 3rd Walk for Apraxia scheduled on October 15 at Ty Warner Park in Westmont. In two years we’ve almost $80,000 for apraxia research, awareness and education. We are extremely proud to be hosting an Apraxia 101 Workshop later this year for being the top fundraiser for CASANA in 2010 (we raised more than $38,000).
L4K: Finally, how is Jack doing now?
Jack is fourteen and speaks well, although his articulation is still not where it should be. He is often mistaken as being from another country — almost like he has an accent. People have believed he’s from England as well as France, Italy, Russia and Germany. He sits on the autistic spectrum with an umbrella diagnosis of PDD-NOS. In addition to his global apraxia, anxiety, attention, sensory integration (visual, auditory, vestibular, proprioceptive) and learning disabilities all complicate his overall development. He works extremely hard everyday and we are so proud of his gifts and his accomplishments. My youngest, Connor, still has some articulation issues and very mild verbal apraxia issues at the age of six. He is learning to write and read independently and receiving speech reinforcement in his classroom (Jolly Phonics is a great multi-sensory approach to learning letters and the sounds they make) and through therapy in school.
Wow–isn’t she a wealth of information and support?! Thank you, Holly!!