Growing up apraxia: “I want them to learn what it is.”
Hi Alexis! I remember first seeing you on the facebook page apraxia awareness and hearing you do a very real and raw live Q&A. That was very brave of you! You were so gracious to answer so many questions openly and honestly. This past year, I set a goal to reach people outside of the United States. I want to help those who have apraxia worldwide get the help they need and deserve!! Having you on this blog post to start May and Apraxia Awareness month is helping achieve just that!! Thank you for your bravery!
To start, can you begin by telling us a little about yourself and your journey with CAS?
I am 23 years old. I am an insurance advisor in Alberta, Canada with the Co-operators. I took speech therapy from kindergarten until grade 5. I remember really realizing for the time that I had a speech impediment when I was about 7. I became interested in learning more about it in grade 6 – what it was & why I had it.
What do you remember as a child with CAS and speech therapy?
Like I said, I started speech therapy in kindergarten. I have really vivid memories of the hearing test they would do. Putting a headset on and listening for the beeping. You’d have to tell the person what side the beeping was coming from. I was always so proud because I aced those tests every time. The pride was usually met with confusion the first few times though. I did so well, you told me I got all of them right, so why do I have to come meet with you for lessons?
I remember being told I had a speech impediment. I remember all of the “that’s not how you pronounce that”, “listen to me”, “watch my mouth”, “it still doesn’t sound right”, but I didn’t get it. I can remember being frustrated and angry. This woman would tell me all these things over and over again and I was sitting there thinking lady, I just heard myself say it, it sounds exactly the same as when you do it. Of course, it didn’t.
When I say the first time I remember really knowing I had this was 7, it’s because I’m fairly sure that was the first time my speech therapist used a tape recorder. This thing was the bane of my existence. I’m 7, over confident, and a little annoyed with this woman because we’re saying the same thing. Was I ever showed up. This tape recorder comes out because after give or take two years my speech therapist must of realized I really didn’t hear what she was hearing. My voice in my head has no speech impediment and I was too young to understand that I just wasn’t hearing it right. I was about to have my little world crushed.
Every session started with me telling her about my last week. This session, she recorded it. The moment she hit play and I had to hear my actual voice, instead of the one in my head, I wanted to disappear forever. She’s not wrong when she says my sounds aren’t right. All of a sudden two years of fighting this woman came crashing down around me. I was wrong, she was totally right, and I sounded (to my very young self) weird. I can not tell you how miserable I was hearing this recording. I did everything I could after that to prevent her from using the tape recorder again. It did help though. My sessions went better and I got more done, because I knew I actually was saying the sounds wrong, even if I couldn’t hear it.
Were you ever bullied?
I know this isn’t what parents are going to want to hear, but yes, I was bullied a ton. The bullying continued all the way into highschool. Luckily for me, I had a great few friends and family members. We really started to look at people who said anything about it as just being sad, or a little pathetic. It might sound harsh, but really of all the things to choose to pick on someone for, this was pretty ridiculous (it’s always ridiculous though). Honestly, “they talk a little different then me so I’m going to bully them”. We’d think about their bullying in that really point blank way, and just laugh at them. That train of thought is may more ridiculous sounding then I’ll ever be.
How has apraxia affected your life, or has it? Do you have any residual issues?
The bullying did affect my life. Most days my above tactics worked great, but of course everyone has their off days where it just sucks. It still does just suck sometimes, but that’s not the end of my world. I still can’t say any of my R sounds. R sounds were the last thing to work on when I was in grade 5, and due to a lack of speech therapists in the school and time, I was seen 3 times that year. Once I got into middle school it wasn’t provided through the schools anymore and the cost was too high to do it privately. Now, I’m 23 years old with no real talent for R sounds. My last name is Berger and I work in the insurance field. Good choice, self. Other than that I have no real side effects or issues concerning my Apraxia.
Most parents are so worried about the future when their child gets an apraxia diagnosis. What would you tell them?
Your child is going to find their voice, it might be missing a few sounds or it might be through something less conventional than talking, but they will find it. We look at speech as so important, and it is, but you can live such a full life without being perfect at it. They are going to have talents and skills all their own that have nothing to do with how they talk, and chances are their speech being a little off won’t affect it at all. Support them, be there for them, and be ready to answer questions if they have them, but don’t make their entire life be Apraxia. You can find your voice without talking perfectly; talking is really the smallest part of it.
What do you wish more people knew about apraxia?
That it existed. No, really, just that it existed. I have been explaining this to people for about 11 years now. What it is, what it does, why I sound the way I do, and answering their questions. I just feel like if more people had known what it was when I was in school, it wouldn’t have been such a big deal to them.
What would you tell a child who is currently struggling to speak or who lives with a dx of CAS?
Don’t feel pressured to tell people it’s an accent. Most of my life people have thought that’s why I sound like I do. On an almost daily basis people ask me where I’m from. I always politely tell them it’s a speech impediment and give them some basic info. I want them to learn what it is. The most common response? “Oh, you should just tell people it’s an accent”. This is my absolute biggest pet peeve. The truth is, if someone tells you to say it’s an accent it is because they are uncomfortable with your explanation and with the truth. They feel a bit bad that they asked you where you from and they were wrong about it. They wouldn’t have to feel that little awkwardness if you had told them it was an accent and played along. I can promise you this is the real reasoning 99% of the time, even if people deny it. Do not let someone tell you to say you have an accent, unless that is truly more comfortable for you and what you want to do. You have a speech impediment. It is a part of you and there is absolutely nothing wrong with having one.
Aside from that, if you are working through your speech therapy at the moment, listen to them when they tell you to practice at home. I was supposed to practice my sounds in front of a mirror for at least 20 minutes a night and I flaked on it all the time. Don’t flake on it. Practice the sounds, it really will help things.
What do you think professionals such as teachers and therapists need to know about CAS?
Number one thing is that it exists and what it is. I have had so many awkward moments with teachers over the years. The second thing is how to handle it. If the student is old enough, ask them if you can help in some way. If they are still quite young, ask the parents.
I had teachers make me repeat an answer in class (in middle and high school) over and over and over because they couldn’t understand what I was saying. It was embarrassing. The other students would laugh and the teacher still wouldn’t realize that they should probably just stop. I would go up and just write what I was saying on the board. Then I’d get in trouble because it was unnecessary to do. Let your students help themselves and help you understand them.
If a teacher didn’t understand me after a few tries often one of my friends would just repeat my answer to them. This was great for me. I loved and appreciated them for doing this. Sometimes the teachers would get angry about it though. Let them help if need be!
Another big one is if you pick me to read something out loud I might take an extra second to read a word out. I would be thinking of how to pronounce it and trying to be sure it was going to come out properly. The teacher would just interrupt and say the word themselves. Let your students at least try to get it out. If they do happen to mispronounce it, see if they correct themselves. If they don’t correct themselves and just keep going, then leave it. Do not point out their mispronunciation in front of an entire body of students. If they are still in speech therapy you could try writing it down and letting them know after class which words came out wrong. Then they can take that to their next session as helpful information.
Thank you Alexis! This has been one of my favorite interviews. Your honesty and candidness are exactly what people need to here. I love your perspective. I just can’t say enough. Thank you for your willingness to share your story!
Growing up CAS is part of an ongoing series that aims to celebrate neurodiversity and highlight those who have grown up with Childhood Apraxia of Speech and related struggles. If you are interested in being featured, send an email to lauraslpmommy@gmail.com