Many parents of children with communication disorders such as apraxia report feelings of anxiety, fear and trepidation during back to school. Worries about their child being understood or being bullied run rampant. Furthermore, parents feel powerless. This podcast explores those feelings more in-depth and provides resources and suggestions to help parents and their children during this transition.
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Letter to the teacher
Today I am so excited to have Jordan LeVan with us to contribute and tell his story for my growing up with apraxia page! Jordan is a 22-year-old in college studying psychology. I’ve gotten to know him through the magic of social media, where he shares stories about his life and posts informational and inspiring messages about living with verbal Apraxia. You should check him out on Facebook, Instagram, and YouTube!
Hi Jordan! Can you start by telling us a little bit about yourself?
Hello! I’m Jordan, and I’m 22 years old. I was diagnosed with Verbal Apraxia at five years old, and since then, I have been fighting for my voice. I advocate for those with Apraxia and speech issues, and I run a page called “Fighting for my Voice: My life with Verbal Apraxia.” I’m currently a college student at Guilford College, and I am majoring in Psychology. I enjoy writing, photography, and making people laugh and smile. I enjoy using creative outlets.
When were you first able to speak?
I was considered “nonverbal” until the age of 5, and at that age, I began saying full words more. However, speaking was still extremely difficult for me. I remember at the age of eight stomping my foot into the ground, just trying to get out a single word. I was able to speak to strangers and be understood by the age of 12.
What was the hardest thing about growing up with Apraxia?
Nobody knew what it was. The lack of education was so real. I had no resources or outlets besides speech therapy. None of my speech therapists during this time had ever worked with a kid with Apraxia; this was in 2002. I felt like I didn’t understand my condition at that age. It was so confusing, frustrating, and overwhelming all at the same time. I also didn’t think anybody else had Apraxia, due to the lack of awareness during this time; this was difficult for me because I never had anybody I could relate to.
What was your school experience like? Can you tell us how it affected you not only academically but socially?
My school experience was rough, and I would be lying if I put it any other way. I couldn’t read nor write until I was in the third grade, and teachers weren’t understanding of this. I got unfair treatment from not only teachers but also speech therapists. My kindergarten speech therapist would leave me outside her classroom because she didn’t know how to treat a kid with a diagnosis of Apraxia. When teachers would come up and ask me who I was, I couldn’t tell them my name. The social aspect of not being able to say to others your name brought on feelings of panic from a young age. The social component of me connecting with my peers was challenging. I got bullied from a young age. I had to be pulled out of public school in the sixth grade; this was because the bullying was too extreme.
How has Apraxia affected your life? What are some residual effects you have?
Apraxia affected my life so early that I wouldn’t know a life without it. Some residual effects that I have are my voice volume level. I often speak quietly, and I sometimes don’t even realize it. Until others are like “Speak louder.” Those cues help me understand. It also affects my tone of voice. I often sound monotone if I’m not putting work into it. I also struggle with getting out words fully and fluency. I’m a constant work in progress.
Most parents are very worried about their child’s future when they are diagnosed with Apraxia. What advice do you have for them?
Be your child’s biggest advocate. You’re going to have to fight hard to get your child proper services. However, it is so worth it. Normalize conversations about Apraxia. Help them be open with others about their diagnosis. From a young age, help them accept this is a part of their life, and it will make them stronger. Along the way, teach them how to advocate for themselves. I’m always advocating for myself, and I know my rights. Just because I am not neurotypical, doesn’t make me any less of a person. Let them know their value and their rights.
You are truly an inspiration, and I’m so grateful for you speaking out! Do you have any final thoughts?
My life with Verbal Apraxia hasn’t been easy as you can tell. However, I wouldn’t be the person I am today if I didn’t have it. I’m not sure if I would trade it or not, because it’s made me a compassionate and understanding person. It’s showed me a different perspective on life. I don’t believe I went through my struggles for nothing. I believe I went through my struggles to help others. If I can help others, me struggling to get out words is worth it. I want other people with Apraxia to know that you were built for this. The fact you wake up everyday, and decide to push forward while your brain is trying to hold you back is brave. Despite my struggles, I refuse to go down without a fight.
So well said Jordan! Refuse to go down without a fight. Thank you so much for guest blogging today! Keep spreading your message because you are helping more people than you even know.
Growing up with apraixa 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
Intro and background from Laura Baskall Smith, a Speech/language Pathologist specializing in Childhood Apraxia of Speech.
Lying on the couch after work, mindlessly scrolling social media when my sweet nine year old daughter says, “Will you push me on the swing, Mama?”
I’m a pediatric speech/language pathologist and my job is AMAZING, but it’s also very demanding and zaps me mentally and physically by the end of the day. An introvert at heart, I need alone time to recharge and refuel. Needless to say, pushing her on the swing was not on my agenda for the night. However, as I looked into her bright eyes sparkling with hope, I put my phone down and asked her to give me five minutes. Enthusiastically she ran to the clock, figured out how long five minutes would be, and then bounded out the door.
There was a time my daughter with apraxia couldn’t say “Mama” and had to go to speech therapy to learn it. Once she had words, she had to learn how to put them together to make a phrase because she also has a developmental language disorder. There was a time she had to go to speech therapy to learn how to add the /s/ to /s/ blend words, words in which an /s/ is next to another consonant as in “swing.” There was a time she had to learn how to use verb tenses correctly and once she understood and used verb tenses correctly, there was a time she had to then practice “interrogative reversals” in order to ask questions correctly. Those days seemed so long. The struggle seemed so long. Yet here she stood, effortlessly doing all those things as though she never spent hours in therapy offices learning how to do them. Here she stood asking to be pushed on the swing, something most kids were doing while she was working hard to find her voice.
Though my daughter can pump her legs herself now and swing, there was a time she had to spend hours in occupational therapy and physical therapy before her core strength could even support the act of sitting up on and pumping a swing. Then, once she was strong enough, she needed more therapy to get the coordination of the movements down. As she got taller, she then needed to learn how to change the motor plan and move her ankles out to the side so her feet wouldn’t hit the ground. Yet, here she stood, able to do all of these things now but still asking me to push her. She’s nine years old. We are getting close to her never asking me this question again and the gravity of that sunk in. Would this be the last time she asked me to push her? My mind flashed back to her beautiful smile when she is swinging. She literally came out of the womb and hogged the swing in the nursery. The nurses all laughed and mused at the baby who was only happy in the swing. It never stopped there. I have numerous pictures, too many to count, of her swinging in various ages of her life.
I thought about how swings go up and down and up and down and how Ashlynn smiles and giggles through it all. I thought about how swings are a lot like life in that way. Ashlynn has a lot of challenges. She has a genetic mutation called BCL11A that has caused numerous disabilities and her life is anything but easy street. If anything, it’s more like the swing in that there are ups and downs, successes and challenges. Through it all though, she smiles.
I thought about all the areas I’ve had to push her. Sometimes I wonder if I pushed too hard. Did I let her be a kid enough? Will she only remember speech therapy, occupational therapy, physical therapy, and tutoring? Nights struggling through homework? Nights struggling through activities of daily living that are so hard for her, such as brushing her teeth or getting dressed, because I know she needs to learn to do them for herself?
So on this cool summer evening in June, tired from work and craving alone time, I got up and pushed her for an hour that night in the backyard. We laughed and giggled and made up games. I reveled in the fact my daughter still wanted me to push her, and I prayed to find a balance in the future of pushing her not a breaking point, but further and further to her potential. Oh, and making sure we find time to keep smiling and laughing along the way.
Laura Smith is a mother to two beautiful children, one of which was diagnosed with a rare genetic mutation that caused a multitude of learning challenges. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com
I was a member of the Apraxia Kids facebook group online one day in 2013 and a movement had taken place. This was going to the be the first year an Apraxia Awareness Day was officially recognized on May 14th! This day is also in the same month as the American Speech Language Hearing Association‘s campaign for the month of May being Better Hearing and Speech Month.
My daughter Ashlynn was diagnosed with apraxia in September of 2012, and I had been living in a place of fear, panic, and worry ever since. Having an event like the first ever Apraxia Awareness Day materialize almost 8 months later seemed like a blessing. It pulled me out of the sorrow in which I had been living and energized me. People were making these social media posters that described their child aside from their apraxia and it was inspiring. I wrote my post that night with the poster I had made for her.
It’s poorly done, and hard to read…but to me, this meant EVERYTHING. It says
This is the face of APRAXIA, but apraxia does not define her. She is a smart, beautiful, loving, playful, kind, sweet, fun, joyful, Daughter and BEST Big Sister.
Numerous others made a similar poster. The day was so inspiring and empowering, it lifted me out of the fog.
This one was clearer. You could read it. I made it and printed it out for her class to take home. Five years ago, I realized Ashlynn was my hero and I knew she was going to be a hero to so many others.
On this day, I was an SLP at her school and the only other kid with apraxia in the building was a twice exceptional student with apraxia in 5th grade. All together we created a presentation in which the 5th grade boy was adamant we make it clear you can’t catch it like a cold. I thought it was rather silly until almost all the kids raised their hands when he asked Ashlynn’s second grade class who there thought they could catch it like cold. I was in shock. It was eye opening for sure and reminded me why I need to continue to spread awareness!
My daughter Ashlynn beat apraxia. I wish that was all she had to beat. She went on to get a diagnosis of dysarthria, cerebral palsy, dyslexia, and then an umbrella genetic mutation diagnosis of BCL11A that is the explanation for all of her disabilities including apraxia. Despite this though, she just tested ON GRADE LEVEL for reading now as a third grader after making almost 2 years worth of growth in ONE year. She beat apraxia, and I know she will continue to beat everything else that is thrown at her. With apraxia in our past, it’s a wonder why I haven’t moved on. After all, I could be the: dypraxia advocate, dyslexia advocate, ADHD advocate, SPD advocate, dysarthria advocate, language disorder advocate, or rare genetic chromosome disorder advocate. Why do I still remain and apraxia advocate?
The answer is simple. I was graced with “ripples.” If you are wondering what ripples means, it refers to the actions of ONE or TWO people that changed the trajectory of MY life. Those people were the founder of Apraxia Kids Sharon Gretz, and international apraxia expert Ruth Stoeckel.
A phrase caught on called “It’s all about the ripples” and shows little sign of stopping. Many times, when you are on the front line of apraxia awareness you feel like you are spinning your wheels. An apraxia mama I know called it “feeling like Nemo in the Pacific Ocean.” However, that same mom, who is from California, managed to get Apraxia Awareness Day officially recognized by the state of California, something that has not been done in the SEVEN years apraxia awareness day has been officially recognized!!! That Nemo from Cali proves that ONE person’s “ripple” can make a state wide, SIGNIFICANT impact.
Another young woman Reagan Crabtree with apraxia from Iowa is great at social media and has a lot of anchors and journalists on her feed. She has been interviewed multiple times in the news and even appeared in the Rose Bowl. She told me connections mean something, and boy she is right! Her “ripple” reaches the news media and that is a HUGE ripple from ONE girl with apraxia.
I could go on with story after story, but as I look on my social media feed I see a movement growing bigger than before. The ripples are growing further! So many more people are spreading apraxia awareness and because of that more kids are going to get the help they need! I feel the movement! I feel the revival!
Though it can seem we alone cannot possibly change anything, together we have the ability to change the world! Even the smallest stone thrown into the pond can create a ripple, but when those rocks are multiplied, the impact is immeasurable!
Post about Apraxia and Apraxia Awareness tomorrow! Hashtag it #apraxia and #apraxiaawareness and #apraxiaawereness day. Even if you feel like you only educated ONE more person…pat yourself on the back and realize you created a ripple!
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!
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.
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.
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.
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.
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.
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.
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.
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