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.
Sharing Our Story
by Liesa
The sun was shining; it was a beautiful summer day. We met with friends at the park. As most parents do, we started talking about our children. Mildly concerned, I asked if my friend’s daughter was speaking much, after her daughter was only 6 weeks younger than mine. I breathed a sigh of relief that my friend mentioned that her then 17 month-old was still not talking much either.
Looking back, this is my first memory of having concerns but I didn’t realize it at the time.
As time seemed to have passed so quickly, my daughter named “Me” started growing and reaching some important milestones. Even at one of her doctor checkups, I still didn’t think there was any reason to be concerned for her lack of speaking. After all, Me often called me Mom, asked for juice, and could basically say her sister’s name too. As we sat in the waiting room, I remember counting on my hands the words Me knew. When we reached 10, I let out a big sigh of relief. Phew, nothing to worry I thought. But looking back, I should have had some concern at the time. I think we may have counted words that only I understood, without even realizing it. Unfortunately, we didn’t get to see our regular doctor that day and the doctor we did see was running behind. Once the doctor did arrive, she didn’t seem concerned at all about Me’s development.
Over the next few months, we could tell something was off, but we couldn’t quite place what it was. Family and friends insisted they thought it was Me’s hearing and in fact I discovered my mom checking Me’s hearing by going behind her and whispering to see if she would respond. My frustration grew; something was off but I couldn’t pinpoint what it was.
When my daughter was two, I knew she had trouble speaking and it wasn’t related to her hearing. I didn’t know who to call or what my next steps should be. How do you figure out what something is, when the only thing you really know is that something is ‘wrong’? Thankfully, I had a friend who had a child in speech-language therapy, so I thought I would start with her. I knew she had some trouble with pronouncing certain words, so maybe I could get some answers. My friend guided me to the website for speech therapy in our area. This website was several years old but thankfully all the phone numbers were still the same.
When I called the toddler/preschool speech therapy program they asked me what appeared to be routine questions but I found almost impossible to answer. I stumbled over my words, thinking and answering and changing my answers. I finally gave up and said I’m not sure, I just know something is not right. The question? “What problems is your daughter having?”
There was a six-week wait for the first visit, something I know is much longer in other areas. Me was now 30 months old. I work during the day and it’s difficult for me to get time off, so my husband took Me to the initial appointment. While there, the SLP thought Me’s difficulties were because of her age, typical for her age range, and that she would most likely grow out of the concerns. She recommended a reassessment in three months’ time. In the meantime, we were supposed to tell Me when she wasn’t saying words right, point to our mouths, and tell her how/help her say it.
What a long, frustrating three months. My daughter Me went from a happy, energetic smiley girl to frustrated, quiet and passive. But I assumed it was her age; terrible twos/almost threes can be a difficult time for kids and they often have some attitude during that time.
Boy did our lives change, one snowy, blistery January morning. I was home from work as the roads were closed and I received a call from the SLP. No one could make it into her office with the weather, so she was scheduling follow-ups. The question she asked this time was much easier to answer: “Do you still have concerns about your daughter’s speech?” YES!!!!
A couple of weeks later my husband took Me in for her re-assessment. I assumed to make improvements to her speech would be something simple that they would be able to correct in a few months of therapy. I didn’t put too much thought into it. But within in the first five minutes of the appointment our SLP told my husband that she suspected my daughter had childhood apraxia of speech (CAS). When I arrived home after work my husband shared the news with me; I had heard of CAS but didn’t know all the details. I threw myself into learning and educating myself, reading articles and reaching out to support groups for answers. Now we had a name for what was going on with Me. Now, we could start to make changes.
At that re-assessment, because of the frustration Me was experiencing, our SLP encouraged us to stop the previous advice of telling Me that she was saying words incorrectly, but to start building her confidence; if we understood the gist of her message we were to answer as though her speech was clear. So, this is exactly what we did. We saw changes immediately! And when I say immediately, I mean that very night. My bubbly, smiley girl was back! That night, while I was tucking her in, she had the biggest smile on her face. I asked her what she was so happy about. She went on and on about how now that she is smiling the tooth fairy will be able to find her teeth and take one and leave money under her pillow. Her story lasted 2-3 minutes, but her smile has stayed the same since.
— Why my daughter is named Me —
Did we keep up with the latest celebrity baby name trend? Is it a family name? No, my daughter Me, can’t say her own name. At first, like many parents, we laughed and giggled when we asked her name and she replied with “me”. Until we realized she couldn’t say her own name. My daughter Me is diagnosed with Childhood Apraxia of Speech and receives 3 hours of private therapy a week. She started therapy 8 months ago with only 10 words. She has worked so hard and has come so far. She has the confidence to say ‘hi’ to new people that she meets and still has her smile! She still has a long road ahead of her, but she’s got this.
Liesa is living the small town Ontario life, with a lot of support from her husband Joe and their two amazing girls.
