Apraxia Awareness Month
Preamble
May was Apraxia Awareness Month and I had decided to spam my Facebook and Instagram friends using the story feature to talk about Apraxia after writing up this post about Apraxia. If you have not read (or don’t want to read it), here is a summary of what Apraxia of Speech is:
Apraxia of Speech is a motor speech disorder. It is neurological and there is no cure for it. Childhood Apraxia of Speech (or CAS) is congenital, it is presented at birth. Acquired apraxia can be acquired in adulthood after a traumatic brain injury (TBI), a stroke, brain tumor, or dementia to name a few. What I am mainly talking about is CAS. CAS is extremely rare, only 1 or 2 out of 1,000 children have CAS. It is typically comorbid with another diagnosis such as autism or a hearing loss disability. Thus, having CAS by itself is even more rare.
But what is Apraxia of Speech? I briefly explained the science behind it, but how does it present itself? It is a motor speech disorder, so it is about fluency of speech which affects your intelligibility level of speech. Note, of speech not your IQ. In a typical case, your mind and mouth work in tandem with one another in producing speech. It is as if you have wires in your brain that sends sound waves and speech sounds to your mouth. However, with Apraxia of Speech, the wires get short-circuited, and the individual gets stuck and are unable to say a sound or word. It may manifest itself into stuttering. Fun fact, there are multiple forms of stuttering. It is not just the repetition of sounds (i.e. b-b-butter). There is no weakness of the mouth, it is not like dyspraxia (which is similar but one of the major key difference is dyspraxia has weakness of the mouth). It is all neurological and no one knows what the cause is.
I have CAS. I was diagnosed around the age of four, I keep forgetting to ask my parents when exactly, but they may not remember my exact age (without looking back on medical paperwork). But I know I was in preschool specifically for speech therapy. CAS still affects me to this day, even at aged twenty-eight. It is not something that a person simply grows out of. It is not because of laziness. Two things my parents had said they were told. It is all neurological, it is how my brain works. But there are tricks and strategies I have learned throughout my thirteen years in speech therapy and beyond that had helped me. Some of which, I have been teaching my own students as a school social worker! Take a breather, count to ten… It’s okay to be frustrated. Feelings are valid.
Even though, I know how to intervene and prevent from my apraxia from flaring as I sometime like to say as a feeble attempt of a joke. It is sometimes noticeable through blocking stuttering, which is being “stuck” from saying a word and often times physical tension can be observed. Sometimes when I am talking, I will stop mid-sentence, try again but then get stopped again. Usually high levels of emotion is at play.
But I have improved a lot since I was child. Nay, since last year. Everyday it is a constant struggle, and it is a daily evaluation, whether I know it or not, and I forget that I have improved until I listen to a recording of my speech. Just don’t tell my dad that sometimes I do that…
To conclude this preamble, here is what I am going to talk about next. I am going to briefly [edit, try to] talk about this past month. I am going to talk about what doing my Apraxia Awareness Month series meant to me and perhaps include things I didn’t get to share because in the beginning I was still trying to learn the story option.
Week 1 – May 1-6
I began with quick facts about Apraxia. I used the term “neurodivergent,” because Apraxia would qualify as such. I shared an amazing quote by former First Lady Michelle Obama – “You should never view your challenges as a disadvantage. Instead, it’s important for you to understand your experience facing and overcoming adversity is actually one of your biggest advantages.”
Apraxia is a challenge of mine. It is. I have learned to share about it in interviews when asked the dreaded “what are strength and weaknesses” question. I explain how communication is more difficult for me because I know that the other person is already hearing my speech pattern and irregularities, so I call it out first. I explain that I have a speech impediment, but like what Mrs. Obama said I have learned so much through it. I have learned that apraxia is simply a trait that I have, it is like me having glasses or blue eyes. It is a part of who I am. It taught me to have determination. It taught me to have empathy. Due to the nature of my job, I help students who are going through something and at times, they may feel like they are alone or different. I don’t ever tell them what I went through, because of my own journey, of my own struggles, I am able to help them. I to know how to encourage them and to help them see their challenge and adversity as an advantage.
On May 3, I made a video but was unable to share it. It was to share a personal story and I was stumped. Research have really been developed in the past decade or so, so it is relatively new in the research world. Thus, most personal stories are of parents of apraxia kids and not an adult with CAS. But that’s me. My personal story is just my life, I know nothing else. So on May 3, I decided I will share stories of my life, of people in my life who made me who I am and through that, it helped me overcome apraxia.
On May 3, in an unseen video, I talked about a man in my life. He was someone who never met a stranger, loved his family, and was a silly guy. At least he was silly with me. He was born in 1930 and his story was not unusual for that time. He was the youngest son (and the fourth born, I think?) and when he was quite young, his father died leaving his mother alone with six children (twin girls were born after him). So, he and his brother, closest to his age, were sent to live with his aunt and uncle to help his mother out. It was common back then in the Great Depression. I don’t think it was ever supposed to be permanent, but it was, and it was something that this man dealt with. But it never held back. He was very determined. He joined the Navy Reserves, worked his way through college, took over his uncle’s business, traveled to European countries and many Olympics games, and he once told me that for a boy from the Valley, he had done a lot. He did not say that to be conceited, he said it with humility like he recognized that he had the cards stacked against him, but he continued to persevere. The day he died, I was at work, and I remember thinking whether I should try and see if I can go home early. But I thought of him and his life, and knew, for him, I needed to stay with my students.
How it relates to me, often times, he would smile, his eyes twinkling, as he told me, “I remember when you were a little girl, running after those ‘three big brothers.’” He said it as if those “three big brothers” were mean and terrible to me (they weren’t, but don’t tell them that). He said it as if I never let them tell me what to do and I didn’t. Even when my speech intelligibility was low, I was still making myself heard. Does that sound like laziness? On May 3, 2023, one year after Grandpa died, I chose to honor him because it was not apraxia that taught me determination. It was him. He was the one of many who encouraged me to keep going, to never give up, because he never gave up himself. I think, Grandpa always saw me as that determined little girl running after those “three big brothers” despite having a professional license and a master’s degree.
May 4 – I took a nature hike and had my own mini Apraxia Walk, while talking about apraxia. I shared how apraxia not a new idea or development. The first case was in 1861 and it was called aphemia. The term apraxia came to be in the 1900s and then the 1960s was when more research was made. In the past ten years, more research has been found. So it has been spread out through the past century, just not continuously.
Note, dialect and speech impediments must be considered. I grew up in Malawi for a couple of years, my mother was my speech therapist. She was and is not licensed. When I was seven, I was beginning to read and that was what helped me learn the correct speech sounds, because I could read the correct ones versus the ones I was making. I visited a speech therapist once in South Africa and they were English, and they are unsure if my sounds were irregular or if it was because I was an American. I was practicing speech therapy in my own home but think about the sounds I was hearing at school and in the villages. In Malawi, they often switched /r/ and /l/ around or leaving the /h/ off. I am convinced that some of my sounds are because of apraxia (like /r/) but there some sounds that I think is really just my accent and because of my time spent abroad (like /h/). It is confusing.
Week 2 – May 7-13
Apraxia Kids have a free lecture series!
Friends asked me questions about apraxia and it was super encouraging. I love questions. Questions to people with disability are a good thing. You don’t have to be afraid to ask questions, but don’t expect them to answer. You don’t know where they are at in their disability journey. You don’t know how long they have had and/or been aware. It might sound a little strange, but disability awareness can come with its own grief as well as relief. Imagine, you spend your whole life feeling different and struggling to do something that appears easy for everyone else. Then you find out the reason why. You have a disability. You feel relief to have answers, but there can be grief too. Because suddenly you have something attached to you and in your childhood, you hear how labels are a bad thing and you don’t want to be labeled as “that x kid.” So, if you ask someone a question, know that it’s okay if the person does not want to answer your question. They might be tired after a long day or simply don’t have the mental capacity to educate you. Instead, if I may suggest something, look it up yourself. Educate yourself and then bring your questions to them, let them know what you found out. Those research changes things. That tells the individual that you are curious and persistent, that you do truly want to know. It makes a difference.
I ended the week with a series of letters to myself: to my preschool self, to myself when I graduated college, and to me now. It outlined that I was just a typical little girl, who enjoyed playing with dolls, videogames with “those 3 big brothers,” and playing with her childhood pets. I was a typical college graduate, who was anxious and excited about the future, who did not know what laid ahead. Now, I am a typical young professional. I am just a person who has a diagnosis of Apraxia of Speech. Note, I’ve been saying typical. Not normal, because in the medical world, normal is not used. What is normal for me is not necessarily normal for you. Having a diagnosis does not define who someone is.
I gave a mini conference about Justice Sonia Sotomayor’s book Just Ask. Amazing children’s book about inclusion and disability awareness. Here’s a link of me reading “Just Ask” and you’ll be able to hear me stumble and stutter. My speech has improved over the years and I am finding myself not cringing whenever I hear a recording. So, yay, progress!
Week 3 – May 14-20
May 14th was Mother’s Day in the United States. I carried on the personal story aspect by talking about people who helped me with x skill. I wrote about my mother (the daughter of my grandpa who I mentioned earlier) and she was the unofficial speech therapist in Malawi. She had to learn how to teach her daughter how produce sounds correctly. I wrote that she encouraged my love for learning, colors, and nature. All of which led to me being curious about communication disorders and other disabilities and not just because, I have one. I am just very nerdy. I wrote about Grandmother, my mother’s mother and Grandpa’s wife, and how she influenced my love for traveling and for investigating family history and mysteries. Through that, I delight myself in finding the mysteries of science and disorders, in researching new things. I wrote about Grandma, my father’s mother. She was quiet and smart; she was valedictorian in high school but never had to give a speech because of shyness. But she spoke when she saw injustices, she spoke when something unsettled her. When I had written about her, I had composed an email to my pastor, it was nothing bad. It was just some thoughts I had, giving him my perspective. Later that day, I was looking through my bookshelf and this book fell out. It was a book compiled of Grandma’s letters and I opened to a letter from her to her pastor, talking about something that the pastor had said. It was full of grace and humility, and she taught me that – Quietness is reflective, shyness is the fear of speaking up.
May 18 is the Apraxia Awareness Day. Shout out to all incredible speech therapists, I think I found mine from Montana. She was wonderful, she taught me how to recognize wrong speech sounds by purposely misarticulating. It was always fun to catch her in the act and then get an extra skittle. Speech pathologists also are not just for schoolaged children. They can work in rehabs, hospice, hospitals, etc. All populations and all demographics can benefit from having a speech-language pathologist.
Also on May 18, I shared another story to honor someone else in my life. In high school, I was still in speech therapy (does that sound one can grow out of it?). In my last year, there were discussions about me exiting speech therapy. I was for it, looking back on it. I don’t think I felt like I was being supported. I made good grades, I was graduating a year early, and people could understand me on the most part. But I stayed in the program until I graduated later that school year. Because of one person.
This one person thought I needed that extra support in being speech therapy. Sigh. He was in speech therapy (in elementary school, maybe?) and have told me that he still practices reading out loud. I believe based on his own experience, he knew the benefits of speech therapy and that I would be using those strategies everyday of my life. I seem to remember in one of the ARD meetings (that I was invited to go to, hint: If your child has ARD meetings, advocate for them and let them attend. I was not always invited in high school and wanted to go, because it was about my education) that he felt like I would not use what I learned in speech therapy in college. I am inclined to agree with him. I probably would not have used those strategies or even have the perseverance to get through difficult moments in my life. So, on my dad’s birthday, I honored him. I won’t say how old he is, except that he is older than me.
I ended this week with Grandpa’s Spanish lessons on vinyl. To go back to accents and dialects in regard to speech, I am not always understood. But I’ve been told that I am understood better when I speak another language such as Spanish. I think it’s because when I speak a language that is not my primary language, I make more of an effort to say the sounds correctly whereas in English sometimes I forget especially if I get excited about a certain topic. For instance, it is easier for me to be understood when I give a rehearsed speech because I practiced and am paying attention to how I sound. Take Joe Biden for instance. He had talked about how he has a speech impediment. His speech sounds great while public speaking, but when he is emotional, he messes up and he says the wrong words or sounds. That is how it is with me when I speak in English. I might sound great in one instance, then if I am excited or mad about something. My apraxia “flares up” and I suddenly sound incoherent and “sloppy speech.” But speaking in Spanish, I am slow and deliberate so my speech is clearer.
Week 4 – May 21-27
I taught some American Sign Language. I recommend Dr. Bill Vicar if you are interested in learning. I made a testimonial poetry (I was running out of ideas).
Words laid dormant in my mind but somehow when the words are voiced, it twists and turns.
But the Lord in His great humor keeps beckoning me to speak. But the Lord in His infinite wisdom sends the encouragement and hope I need.
Although I would’ve preferred it if he sent me an Aaron, but as long as I don’t have to cross a desert for 40 years –
I’ll take videos and poetry to speak up.
I took a break on May 25. I wanted to relax on my birthday, so I made Mamaw Fowler’s strawberry shortcake (with real shortcake) and I also made tuna cake with greenies for the cats. They enjoyed it. I enjoyed my shortcake. I reestablished my purpose of doing this. I shared a mug that I have with a Ruth Bader Ginsburg’s quote, about “fighting for the things that you care about, but in a way that will lead others to join you.” I don’t talk about apraxia for support or for sympathy. I talk about it to spread awareness, to show people how to be inclusive, and to be mindful that not everyone looks or acts the same way. There is no such as normal. My normal is different from your normal. But you can know what my normal is, just like I can know what your normal is, and maybe we will come to an understanding.
Week 5 – May 28-31
I ended this month with an invitation of being a voice. You have something to say. You have a story. Your experiences are uniquely your own and should be shared. All your challenges and adversity are meaningful. It was fun making that series, I learned a lot about myself, and apraxia and I learned that I have improved a lot. If you stuck with me from May 1 until now, thank you. If you only read this post, thank you.
Conclusion
I realized I honored my maternal grandparents, paternal grandmother, and my parents but not my paternal grandfather. No date in May came up which reminded me of him… Poor Granddad. A quick note about Granddad – I just completed my first semester of undergrad, he asked me “So are you going to make a career out of school like your grandma?” I didn’t know back then. But now looking at my job in the school system and this post and my apraxia series. I have to say: “Granddad, how did you know? Did God tell you?” God probably did.
Painted Sky 