By Leslie Lindsay
Today I am happy to share with you a new non-profit organization based out of Chicagoland, The Apraxia Connection. This new venture has been spearheaded by Holly Olmsted-Hickey, Michele Kowalski, and Barbara Matt–all mothers who have been touched in some way by childhood apraxia of speech (CAS).
Leslie4Kids: Let’s start with some introductions. I know there are three of you who are actively involved in The Apraxia Connection. Can you each provide a brief introduction as to who you are, your role in The Apraxia Connection, and a little about your family/kids, what you do “outside” of apraxia.
A. We are three moms who came together with a common goal: to help other families with apraxia and associated disorders. We all have one or more children with apraxia. Holly is the President, Barbara is the Vice President and Michele is the Secretary. Outside of our family, friends, work and The Apraxia Connection, we stay up to date on information that will not only help our own families, but many families in the Midwest.
L4K: What are the top three goals of The Apraxia Connection?
A. Our ultimate goal is about giving back to families. We plan to do this by connecting families, educators and professionals with valuable community resources and information about apraxia and related disorders. We also hope to bridge the awareness and education gaps through our grassroots outreach in the Chicagoland, Illinois and the Midwest region. As we grow, we look forward to establishing grants to offer families, educators and therapists in financial need. These grants would assist with purchasing the valuable, yet very expensive, therapies, tools and education opportunities needed to help these communities.
L4K: You all are already so involved in The Windy City Apraxia Network/listserv, can you tell us how The Apraxia Connection differs from that organization? ….Will the Windy City Apraxia Network continue as it has in the past, or will it be replaced by The Apraxia Connection?
A. The Windy City/Chicagoland Apraxia Network (http://groups.yahoo.com/group/windycityapraxia/) is a private discussion and resource list for families with children or loved ones with apraxia and related disorders. This network has been building since 1999 and now serves more than 500 families in and around Chicagoland. The Apraxia Connection (http://www.theapraxiaconnection.org/) is a public website and resource for families, educators, therapists, physicians and other professionals. The website serves to create public awareness and connect families on a community and neighborhood level with valuable resources and information in Chicagoland, Illinois and the Midwest region. The website will also better connect these communities, help them learn more from one another and understand how to best help an individual with apraxia and related issues. The Windy City/Chicagoland Apraxia Network plans to continue as a private discussion list and a safe place for parents to ask questions, learn and understand more from one another.
L4K: In your opinion, what are the biggest concerns of parents raising a child with CAS?
A. A very big concern of ours is the feeling of isolation a diagnosis can give a parent. Each of us went through that horrible feeling. We hope to alleviate that for parents and families. The Apraxia Connection can provide a support system electronically via our lists, email and our website; in person through our monthly meetings, events and family gatherings; and even by phone and other resources including our upcoming free library and Connections Directory. Parents can “talk the talk” with the understanding of families who have been there or going through the same thing at the same time. It makes it much easier to be in familiar company and not feeling like you need to reinvent the wheel by explaining your situation again and again. Our families understand.
L4K: What is the best advice you can give a parent who is just beginning the apraxia journey?
A. Some great advice we’ve received:
- You are not alone! It may be a long road but you will always have someone there for you on the path that can point you in the right direction.
- You are your child’s best advocate! You know your child the best. Stay activelyinvolved in the medical, therapeutic and educational decisions made with your child’s team of specialists.
- Frequency & consistency! These are two pieces to the apraxia puzzle that will serve you well in many areas including therapies, insurance paperwork and your own support.
- Fill your child’s head with speech & language! (frequently & consistently)
- Read to them. Sing to them. Talk to them. Play with them. Expose them to new sights and sounds and experiences. What is absorbed by their brains through their eyes, ears and touch WILL eventually be expressed with sounds and words out of their mouth!
- Visit The Apraxia Connection! Let us help you connect with the resources you need.
L4K: If you were to talk to a group of kids with apraxia, what would be your message?
A. To the children with apraxia: Believe in yourself. Keep trying. Keep practicing. Never give up on yourself.
To friends of children with apraxia: Believe in your friend. Encourage your friend. Play with your friend. Never give up on your friend.
To family of children with apraxia: Believe in your child. Encourage your child. Playwith your child. Never give up on your child.
L4K: What are your favorite resources for parents raising a child with CAS ?
A. Our favorite websites are these:
- Apraxia-KIDS, www.apraxia-kids.org
- Apraxia Adventures, www.apraxiaadventures.com
- CHERAB Organization, www.cherab.org
- Wright’s Law, on special education, IEPs, etc. www.wrightslaw.com
- Kaufman Children’s Center www.kidspeech.com
- Prompt Institute, www.promptinstitute.com
- American Speech-Language-Hearing Association www.asha.org
If you prefer printed material/books, there are plenty of those as well. Here are our favorites:
- A Mind at a Timeby Mel Levine, MD
- The Explosive Childby Ross W. Greene, PhD
- The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz
- The Out-of-Sync Child Has Fun: Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz
- Seeing Clearly: Fun Activities for Improving Visual Skills by Lois Hickman, MS, OT, FAOTA and Rebecca Hutchins, OD, FCOVD
L4K: What is your “dream” for apraxia awareness, therapy/treatment, advocacy? Our biggest hope is more understanding and awareness of the complexity of apraxia and the disorders often associated with it. Apraxia of speech is not just your typical speech disorder nor does it often travel alone. Dealing with apraxia takes a pro-active approach and not a “let’s wait and see” attitude. It would be nice not to have to always explain and justify the differences. We hope for more acceptance, more compassion and understanding of our exceptional children, teens and adults.
L4K: What is your proudest apraxia moment–personally, or something that has happened within the group.
A. Our proudest moment is right here and right now. We are finding great joy in realizing our collective dreams to help families and individuals affected by apraxia and related disorders walk this unfamiliar path. As a non-profit organization, we hope to help families, schools, clinics, physicians and professionals to connect and navigate this often misunderstood special needs maze together.
A big thanks to Holly, Barbara, and Michele! Thank you for taking the time to share with other apraxia families your goals and vision for The Apraxia Connection.