This post is part of an ongoing series of posts from parents. We are so excited to be sharing some thoughts and stories from some Ontario Parents who are deep in the trenches of their child’s CAS journey. While each in a difference place, and in a different location within Ontario, as parents we think you will feel CONNECTED to them, hope it will help SUPPORT you in your journey, and EMPOWER you even further as the strongest advocate for your child. We’d also love to share your story – please write us about how you can help others by sharing your journey. Only by contributing can we all by truly connected.
Fighting for a Voice: The Accidental Advocate – A Parent’s Story
by Liesa
Change? Me?!
Like many parents, once I heard about Childhood Apraxia of Speech (CAS) I went to Dr. Google to see what we were dealing with. I had heard of it before, but the information I had wasn’t entirely accurate. As I sifted through all the research and Facebook groups, it became clear that children with CAS not only struggle to use their own voice but need someone to stand up for them to receive the services they desperately need.
As I shared what I was learning with family and friends many were in disbelief and could not believe the disparity in therapy. One sleepless night I created an online petition at bit.ly/MydaughterMe but before I posted it I really thought about it. Do I really want my daughter’s picture out there? Do I want to advertise that she has a disability? The next day I asked my husband if he was okay with it and he enthusiastically said yes but I was still unsure. That night was yet another sleepless night. How was I going to pay $20,000 a year for the next 10 years to give my daughter the therapy she needs? How do other parents do it? Knowing other families wouldn’t be able to afford private therapy made me think; who are we as a society to decide who gets a voice? Who says one voice is more important than another?
At this point, I knew I had to activate the petition. I started off small – I sent it to family and friends. I never really thought of how many supporters we would receive but I thought if we got 200-300 it would be amazing. I added it to the same Facebook groups that I had reached out to for answers. The numbers slowly climbed. We made it to 500. I had family and friends texting and calling me and we were all very excited and then the numbers kept climbing and climbing! We’d hit the refresh button and we would jump 20-50 supporters each time. We ended up on the front page of change.org! Wow! So many people supporting my daughter and all children with CAS!
The numbers and the support was overwhelming! However, I still wanted answers. Why aren’t these children receiving the care they need? My first stop was my own public SLP who is amazing and we absolutely love! The response we received back was that she should be receiving more therapy but because of her current caseload size, this would not be possible.
I couldn’t stop there. Why was this SLP required to take on such a large caseload? So I contacted the Director of Ministry of Child and Youth Services who oversees the entire public preschool speech-language therapy program in Ontario, who directed me to the manager of my local preschool therapy program.
I wish I could write about an amazing experience. But unfortunately, this phone call was disappointing and unprofessional; by far the most difficult situation on my journey so far. She had a stern tone, spoke over me and put words in my mouth. I explained that I was simply trying to get answers. I reminded myself that she was lucky to have her voice and able to express her opinion with it. That lit a new fire in me and a passion that kept me from giving up. It really confirmed that I needed to do something to help give these kids a voice. To me her defensive reaction to my simple questions meant that deep down. even subconsciously perhaps, she knew that what is happening wasn’t right.
Next, I contacted my Minister of Provincial Parliament (MPP) who was absolutely amazing and supportive. She was interested in our story and wanted to learn more. Unfortunately, she broke the news to me that online petitions are not accepted in Ontario (oh darn! We had over 25,000 names at this point!!) My wonderful MPP helped me get in touch with their Toronto office to create an official petition, valid in Ontario. I wanted this petition to truly be from all children with CAS and not just from me. Once again, I found myself going back to the same Facebook support groups and asking other families about their struggles and what kind of change they would like to see. I also connected with Speech-Language Pathologists, to ensure the petition would work for all of us in Ontario. After many e-mails and phone calls back and forth with my MPP’s Toronto office we finalized our official petition for Childhood Apraxia to be distributed to people in Ontario (http://oppencas.ca/petition-cas-services-diagnosis-awareness/). With enough support, my MPP could lobby the Ontario government for the changes we need!
At one point, a co-worker of mine mentioned how lucky my daughter (and others with CAS) were to have me advocate for them. Advocate? ME?!? Did she not know who she was talking to? I am usually the quiet person that doesn’t speak up, or is nervous about sharing my ideas and point of view at risk of offending others and now I’m being called an advocate? I really hadn’t thought about it like that and certainly hadn’t set out to become an advocate. But after some reflection and sharing my story I realize that I have become an active advocate for children with CAS, and that every single person who takes a stand can make a difference.
I had no idea my life would go down this path but so glad that it has. Our journey with CAS is far from over and I will continue to use my voice until these children have theirs.
Liesa is living the small town Ontario life, with a lot of support from her husband Joe and their two amazing girls.
