Adult Stories
We share stories from adults living with childhood apraxia of speech. If you would like your story to be featured today, please email us. We are here to celebrate you!
Jessica Huttinga
Hello everyone, My name is Jessica Huttinga, I am 22 years old and live in the Netherlands. I have been diagnosed with apraxia since birth. Here in the Netherlands this is called developmental verbal dyspraxia.
The first characteristics where you could already see that something was wrong with me was when I was a baby. I babbled a little, but not as much as another baby. You could see that I understood everything, but I couldn't talk back. When I was a little older you started to notice it more and more. When I was 2 years old I only spoke 10 words and many of those words I spoke in my own language. As a result, communication with my mother was not optimal. Often she did not understand what I meant and this also made me very frustrated and easily angry, which is of course also very understandable. If even your own mother doesn't understand you while she's your first real confidant.
When I was a little older and reached the age of primary school, my mother started to worry. How can a 4 year old child go to primary school with so few words and that even her mother barely understands her. I then had an examination with the speech therapist who quickly concluded that I could have apraxia, since I had almost all the characteristics of this. I got speech therapy form apraxia. There are now many more forms of therapy, but in my time that was not there yet. The best thing about the speech therapy time that I can remember is that we often played games. I always liked playing games and this allowed the speech therapist to often do the exercises in the form of a game, for example memory, live goose board, etc. This made me learn it in a playful way, without me knowing exactly that I was practicing used to be.
In total I have had intensive speech therapy for almost 10 years and I also went to a school for 3 years where the emphasis was on speech / language promotion. This allowed me to develop at my own pace. Since 10 years now I have not been treated. That means that I had reached the level where it will not improve anymore. So you will always hear that I have apraxia, it does not matter in which language I speak. People also often think that I speak with an accent, because I pronounce some letters and words differently than they should. Or they often think I'm deaf or I'm from abroad, when that's not the case at all. This is all because of my apraxia and that's just how I talk.
Growing up with apraxia didn't bother me at all. In the past I didn't even realize that I was different from others and that I often had to do my best. I thought everyone struggled with that. If I couldn't do something well, I would try until I could. In my eyes nothing was impossible. The most important thing is to accept yourself as you are. There comes a time when you realize that you are different and then it is especially important that you accept yourself. For example, you can't just take off your backpack of apraxia and think you don't have it, you will have this for the rest of your life. It is precisely then that it is important that you can handle it.
What I would like to pass on to the parents is: If your child has just been born, then that is of course the most wonderful thing that can happen to you. However, in the long run it is possible that you will notice that the development is not going as it should be. Then of course you have all kinds of questions, but who can answer them? In my case, the speech therapist couldn't even answer the question of what my future could look like. I would say now, it will definitely be fine! It is indeed a very long road that you have to travel, but in the end it will be ok. I always compare it to an ice mountain. Once you've started, there's no turning back. Eventually with long or short roads you will also reach the mountain top. What I will say with it, you must never give up as a parent or as a person with apraxia. Because although you have apraxia, you count too!
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Mark Lippert
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My journey with Apraxia of Speech started when I was two years old and diagnosed with Childhood Apraxia of Speech (CAS), but that was just the start of the journey with Apraxia of Speech. There is a whole other journey that people with Apraxia of speech are on. That journey is speech therapy that is an absolutely different beast in itself that takes over our lives since we are going to spend our childhoods in speech therapy sessions. We are usually so young when we start speech therapy that we do not have a concept of what we like or not. So speech therapy becomes a way of life for us since it's another thing in our daily life that we have no control over since we are so young, and we barely notice why we are there yet. Like for me, in elementary school, Tuesday and Thursday were the days that I had speech therapy, that I had to learn just to accept that I had speech therapy those days. No matter how much I tried, there wasn't a way to get out of speech therapy.
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We have so much on our plates at such a young age that we do not know any different in our society. Our childhoods are not supposed to look like this of going to endless speech therapy sessions and possibly other types of other therapies such as Occupational Therapy (OT) and Physical Therapy (PT). I went to PT only for a short time, Which I do not remember; however, for OT. I went to OT for the whole time I was in elementary school. That is a lot to deal with, including school, and we are most likely struggling simultaneously with it. I think the only reason we can deal with all of this is that we are so young when dealing with it that it is pretty much impossible for us to quit and give up on ourselves. As we age, life gets better since we will be able to talk better and have more people understand us, including our family. My family and I had to wait until I was five years old for me to be able to speak my first word, which was the word "ME." So there were three years of me being in speech therapy where I wasn't speaking. I'm not trying to say speech therapy is not worth the time or the money if your child doesn't talk after putting your child in speech therapy. But there are times when progress can be slow, like unbearably slow; however, there are times when progress can be remarkable. Like a person who spent most of the school day with your child three months ago can see a difference.
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In the summer between 6th and 7th grade, I went to summer speech therapy like always when I was growing up. I went two times a week for 45 minutes for about three months. In Minnesota, summers were from early June until very early September, so my summer schedule should have been three months long. However, I had a family reunion, and I had to miss a week of summer speech because of it. Additionally, my parents were nice and allowed me to have a couple of weeks of summer without going to speech therapy, so I had less than two months of summer speech. But that didn't stop me from making fantastic progress on my speech. The person I was referring to when I said "person" was my case manager, with whom I spent probably 80% of my day in 6th grade. When I returned to school for my 7th-grade year, she commented to my parents how well my speech had improved during the summer. She could understand me most, if not all, of the time now. That is how fast and drastic kids with Apraxia of Speech can improve their speech.
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I was super fortunate that most of my aunts and uncles are in the healthcare field. So they understood what my parents were going through and that I wouldn't improve my speech within four months of speech therapy. They knew it would be a long road for my parents and me. They just got it somehow; it's really hard to explain, but they just got it.
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Looking back to my childhood, I remember how speech therapy was a daunting experience for me before I realized its benefits. Fortunately, I had someone in my family who made those sessions tolerable and productive: my sister, who was only a year and a half older than me. Without her presence, I would have refused to do any activities during my therapy without her in the room with me. Sometimes, she would stand by the door with my mom. As I grew older, I became more independent and no longer needed her to attend my therapy sessions.
Nevertheless, she continued to go to speech therapy with me in the summer. There was one summer when she would drive me to my summer speech. While I was in therapy, she often went to a local coffee shop to get an iced coffee drink. Afterward, she would let me have half of it, and then we would go to Noodles and Company for lunch, where I always got Japanese Pan Noodles. We did this routine every Tuesday and Thursday during that summer. Looking back, I realize that my sister was truly there for me every step of the way, providing unwavering support throughout my journey with Apraxia of Speech.
As I said before, Apraxia of speech is the toughest in childhood because you come without one of the most critical communication tools a person could have. You are taken away from you without any fault of your own. Especially when younger and in the very early stages of development as a human, It's a rough go. When you have a sibling in those same stages of life as you and you can lean off them like what I did with my sister, that bond turns into a super strong rock.
Schooling for me was more than a challenge, especially for English
Reading was a massive struggle until 3rd grade, when I started to read independently. It started in 2nd grade when I got one-on-one help for reading. The reading program I used in second grade was the Edmark Reading Program. I got one-on-one help from one of the special education teachers. We would go to our area (which was set up like a classroom, but technically not a classroom), and I used the Edmark Reading Program. In 3rd grade, I was in the special education reading class where they used the reading program that my school had, Systems 44, which was an online program. The reading program had modules like 1:1, 2:5, and 5:4. I used that reading program until 5th grade when I left elementary school. By the time I left elementary school, I was an okay reader for someone who struggled to read until 3rd grade. Then in middle school, they used READ 180, the next-level reading program of Systems 44. It pretty much worked the same way.
The handwriting was a massive struggle for me in school. Even carried over into my high school years, I would write letters and words too big to fit in between the lines and not enough space between letters in the word.
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Spelling was hard for me to learn. I failed every single school spelling test I ever took. Nowadays, it's still hard; if I memorize a word enough times, I might be able to spell it correctly or misspell it by only a couple of letters so that spell check can fix it. If I come across a word I know I can't spell remotely right, I use Google and think of a sentence that includes the word I'm trying to spell. Then I type the rest of the words in that sentence into the Google search bar to see if it auto-completes or predicts the word I'm trying to spell in the search bar. If it doesn't complete the sentence, I press the enter key to see if Google automatically assumes that I typed in the sentence correctly, even with the word misspelled. Then, the search results would be of the sentence with the correctly spelled word.
Middle School was the best for me regarding getting support from special education and mainstream education because I had an amazing case manager from 6th to 8th grade. Looking back, she was the best case manager that I had in my schooling because she didn't try to hold me back due to my disabilities. She fully believed in my academic abilities, which, sadly, I didn't have in the future with my case managers in high school.
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When I entered high school, I had my IEP reevaluation, which required tests to be done. I did poorly on those tests, so my IEP team decided to put me in self-contained classes the following year. From the first day of class, I should have never been in those classes because they severely hindered my academic progress in high school. Since I was put in those self-contained classes, I got a new case manager who was one of the main teachers in the self-contained classroom. While I was in the self-contained class, I was still taking mainstream classes with regular students. Then, in 12th grade, I got a new case manager for reasons.
Most of my case managers in high school didn't believe in my academic abilities based on some standardized tests in the IEP reevaluation system. Which was extremely disappointing. These individuals were supposed to advocate on my behalf and act in my best long-term interests, but instead, they hindered my progress. At times in high school, I felt like a pawn in some game because I wasn't aware of why I was placed in self-contained classes.
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Currently, I'm on track to receive an Associate of Applied Science (AAS) in Cybersecurity. Overall, my college experience has been overwhelmingly positive because I have been getting better grades than I would have thought possible for me when I first entered college. I think the reason for this is that I'm getting left alone from the disability standpoint, and college is a sink-or-swim environment where you can showcase your work ethic and how you can navigate in the real world without someone looking out for you. In college, I could have failed or succeeded. Previously, I never had that autonomy or had freedom over myself before. I always had help, to the point of too much help sometimes, so I didn't have the chance to showcase that I could be totally responsible for myself from an academic standpoint.
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I'm not saying that I should not have been in the special education system because I could have made it alone. I would have most definitely fallen through the cracks without the special education system. From an academic standpoint, I would not have been successful later on in my educational journey without the US special education system.
Overall, my journey with Apraxia of Speech has been a very long road with massive amounts of challenges along the way. It isn't fair for anyone to have to deal with these challenges, but dealing with them at an extremely young age has molded me into the person I am today. Apraxia of Speech is a part of me that I can't throw out or try to block from my memory. Since it would be like someone willingly cutting off my arm if I blocked memories of me struggling to speak or those countless hours in the speech therapy room, Apraxia of Speech will always be a part of my identity, which will never change. I strive to accept and embrace that It is a part of me forever, like DNA.