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.
The Challenge of Having a Child with Childhood Apraxia of Speech
by Robin
Voiceless….to have no voice. To be unable to effectively tell others how you feel, what you want or what you are thinking…this is how my 8-year-old son feels, each and every day. He’s not silent. He tries so very hard to communicate and we listen. We try to understand and respond. Often, he’s not understood. Not even by us, his loving parents who want so much to connect with him. Many times he just gives up or shrugs and says “I don’t know” when asked a question during a conversation. It’s just too hard for him. My son has Childhood Apraxia of Speech (CAS) and his name is Ewan.
Ewan was diagnosed with CAS, a severe speech and language disorder when he was around 2 years old. He was a happy baby, but was not progressing with speech and language sounds as he should have been so we had him assessed around 18 months. He has been in speech therapy since the age of 2. While there have been huge strides of progress, communication has continued to be a struggle.
To be able to communicate effectively with others is fundamental in life. It is the basis of having needs met, being able to express thoughts and feelings and perhaps most importantly, it’s an essential part of making friends. Ewan doesn’t have friends, true friends. By that I mean he hasn’t experienced a meaningful, reciprocal friendship yet. He has lots of individuals who love him, who care for him but no peers who think of him as their pal and no peer that he feels is in his corner. As a mother, I find this heartbreaking yet I am pretty much powerless in making this better. By 8 years old, I had envisioned him running off with friends, riding bikes down the street, playing street hockey in the driveway, laughing and playing great imaginative games. Instead what I hear and experience each day is my boy begging to go to neighbours’ houses or to have neighbours come over. The sad thing is, they don’t want him to come over nor do they want to come to his house. They are not his friends. They are acquaintances who like Ewan and will interact with him for a few minutes here and there, but they don’t want to be his friend. It’s hard to be his friend, I get that. While I understand it, I can’t help the potential friend or Ewan move past it right now.
Ewan wants to interact but often his attempts are seen as invaluable to peers. He repeats himself and often asks “Are you my friend?” during play situations. He doesn’t bring a lot to the table. He isn’t a leader who can initiate games besides “chase me”. I get that other 8 year olds want and need more from a playmate than the limited contributions Ewan can offer at this point. He’s a caring, empathetic boy, but that doesn’t make the situation any easier or better for him.
As each day passes, I feel his pain more. I worry about the overall impact this is having on his fragile self-esteem. I know he has some true friend assets – he’s loyal, fun, sensitive and enthusiastic. He could be a great friend for the right person. Where is that person? Does anyone have their contact information?
I spend a lot of time and effort trying to find new possible solutions. I set up playdates, work on building those crucial social skills he’s lacking and hoping he will find that pal he so desperately wants and deserves. I wish my child didn’t require me to research constantly and feel such endless guilt about not doing enough or not meeting his needs. No matter how much I advocate, research, learn and share knowledge it never feels like it’s enough. I never feel like I have done enough. I suppose all parents feel guilty for something or another. I’m aware that I lack perspective as I only have one child. Perhaps if we had been fortunate enough to have a sibling for Ewan, I would have insight and be able to feel less guilty. We tried but that wasn’t meant to be and I feel guilty about that too! I reluctantly describe myself as a pessimistic optimist. I always feel the need to move forward and come up with new solutions but in the end only feel like it was never enough, not the right path etc. I wish I could do away with the pessimistic element.
Here I sit at the computer during another restless night. Where is that magic wand that I can wave and make Ewan’s challenges go away? My amazing boy is the centre of my universe. I just want what every parent wants- a happy, healthy child. I want to preserve the happy boy whom I see less happy each day due to circumstances beyond my control. I want to stop the pain and anguish I feel each time I hear him plead to go to someone’s house or to have someone come over. How can I protect him from the endless “no, I can’t play now Ewan” or “I’m busy Ewan” responses he most often hears? I understand it but can’t prevent it. I fear soon he will just stop trying all together. He will feel like it’s not worth the effort or that he’s not worthy.
I know deep down, one day he will find that friend- that one, true kindred spirit, a pal. Until that time, I will continue to read, advocate and raise awareness about Childhood Apraxia of Speech. CAS has made an advocate out of me and I think it has made our boy into the sensitive, empathetic, energetic person he is today. Those are things to celebrate. They are traits that will help us in this journey and eventually make some other individual happy to have a pal like Ewan.
This article was originally published in 2014 in the Children’s Integrated Support Services Newsletter. Robin was happy to update us: Ewan is now 10 years old. While friendships are still challenging, we’ve seen significant progress in the past two years. With continued speech therapy Ewan is speaking more and better able to participate in reciprocal conversations. Our role as parents continues to be to help him find that understanding friend who is patient, kind and respectful. We also work hard on reminding him what it means to be a good friend to others. We are now feeling optimistic that he will find that true BFF.
Robin McMillan is a Registered Early Childhood Educator in the Ottawa area. She and her husband Derl started a parent support group called Ottawa Parents of Children with Apraxia (OPCA) in 2008. Robin also edits a newsletter, The Apraxia Connection and facilitates three Facebook groups- one for OPCA and two national groups Apraxia Kids Canada as well as Apraxia Kids Canada Advocates. In July 2010, Robin accepted the Consumer Advocate of the Year Award from the Childhood Apraxia of Speech Association of North America. For more information, you can reach Robin at ottawa.apraxia@gmail.com
