Category: Apraxia

I’m so excited to have some of the two largest apraxia social media influencers with me today to talk about what it is like to be “Adulting with Apraxia.” Mikey Akers from Mikey’s Wish and Jordan LeVan from Fighting for my Voice are both young men living with verbal apraxia.  In the UK, verbal apraxia is known as verbal dyspraxia. 

Jordan and Mikey were talking one day about various issues that affect them in their adult life and wanted to write a piece together.  I think it’s such an important topic, as apraxia cannot be cured and many adults live with residual effects and experience difficulties in which others might not even be aware.  For example, Jordan once was talking about his struggle to find a job. It took him around a year just to find gainful employment. Today our hope is to go beyond the misconception that apraxia is just a speech disorder of childhood and talk about what it’s like, “adulting with apraxia.”

Let’s get to it!  

1. Let’s begin by talking about some of the residual effects both of you deal with today.  Let’s start with word finding. Mikey, you have said before that your word finding issues make it look like a lack of confidence when that is not the case at all.  Jordan, you have described moments when the word is in your head but it simply will not come out of your mouth. Will you both elaborate on this? 

Jordan: Essentially, my speech disorder is known for the following: your brain having trouble sending your mouth signals, for accurate movements of speech. So, at times, I’ll know the exact word I want to say; however, my brain simply didn’t send that signal to my mouth. More occasionally, words are harder to get out, as well as words with multiple syllables. I also do struggle vocal fluency, so my voice is essentially monotone a lot of the times. I have to be putting effort in directly in the given situation to create those various tones people display in their voice when they’re happy, excited, and sad. 

Mikey: Word finding is one of my biggest struggles now that I have found a voice. It is what holds me back, where my speech is concerned. It is what stops me from engaging in conversations with people that I don’t know. It affects my confidence and self esteem and it is the main cause of the anxiety that I have surrounding my speech. At times I stop mid sentence because the word I need isn’t there. This makes my speech disjointed as I pause, frantically looking for the word I need or one that means something similar. Everyone’s had those “the word’s on the tip of my tongue” moments, right? Well it’s like that but it’s every time that i want to talk. As far as talking is concerned I lack confidence but I am confident in every other area of my life.

2. Mikey you have been open about your anxiety.  Does this exacerbate your word finding difficulties or is this a separate issue altogether?  Jordan, do you struggle with anxiety as well and if so how?

Jordan: I was diagnosed with Generalized Anxiety Disorder, as well as Anxiety due to chronic health issue known as Apraxia. I first received help whenever I was twenty years old. My anxiety related to Apraxia relates to thoughts about, “What are they gonna think about my speech?” “Does she/he/they think I’m “dumb” if I can’t get a word out?” Naturally, not being able to get words out is so anxiety provoking. You go in for the word, but it just hesitated to come out from your lips. Your face feels tense now, your palms are sweaty now, and you’re trying to catch your breath back from having trouble over trying to get that word out. You would feel one of the things I just mentioned most likely just from occasionally not getting a word out right the first time. I’ve learned how to cope with my Anxiety with therapy. Therapy is now becoming socially accepted in our generation, as it should be. It’s the one resource that’s made me okay with essentially owning my voice.

Mikey: It’s a vicious cycle. I have huge anxiety where my speech is concerned, this stems from the years of people not understanding what it was that I was trying to say. I know that I now have a voice that others can understand but I worry when I try to talk to someone who doesn’t understand my difficulties that my words won’t come. I worry that they won’t be able to understand what it is that I am trying to say or that they will think that I am stupid for being an adult and not being able to speak properly. Then because I am worrying so much and feel anxious the words really won’t come, no matter how hard I try to force them out, even though I know in my mind what I want to say. Frustrating is an understatement but I am determined to keep fighting to overcome this debilitating anxiety.

3. It has been reported that many individuals with apraxia have difficulty with modulating vocal volume.  This can be where the person is speaking too softly and cannot be heard over ambient background noise, or conversely may be speaking too loudly and not realize it.  Do either of the above scenarios happen to you and if so how?

Jordan: I speak to softly. This happens typically in my day to day life when a person will tell me they can’t hear me. Even when I’m trying my best to speak louder. I can speak louder, but it often comes out louder than I would like it too. People have even been shocked at me yelling. My own mom said to my own speech therapist, “So, he can yell?” A little funny story. Scenarios of this currently happen to me in classroom settings, work, and on the phone.

Mikey: When I was younger I had a very loud, high pitched voice when I was at home and felt at ease with those around me. I never realised just how loud I was but I was constantly being told not to shout. When I was at school or around unfamiliar people I would choose not to speak. Now I have a normal level of speech when I feel comfortable but the minute I am out and about amongst people I don’t know my voice reduces to little more than a whisper. My mum always asks me why I am whispering as she can’t hear me, I don’t even realise that I am doing it.

4. Both of you have mentioned that it may take you slower than some people to process language.  In the apraxia community at large we have a saying, “I know more than I say, I think more than I say, I notice more than you realize.” Do either of you relate to this saying?

Jordan: I do with some of the following, I don’t believe so much with the “…I notice more than you realize.” Because if somebody makes a misconception about my speech, I’ll directly inform them. I usually will express my thoughts in given situations, however, I won’t expand further into the conversation because of difficulty. I can feel mental exhaustion from speaking, and sometimes I simply need a break to recharge. I’ve been able to expand on conversations even further now in my adult life with incorporating hand movements and hand gestures. 

Mikey: I can definitely relate to this. People assume that  because I struggle to verbally express my thoughts and feelings that I have no opinion on subjects that are being discussed, which just isn’t the case. This happens more when I am in a larger group as the conversation flows so quickly that by the time I have processed the beginning of the discussion and have found the words to reply the conversation has usually moved on to the next topic. If people just slowed down the conversation they would realise just what I ‘know’, ‘think’ and ‘realise’.

5. With this flurry of struggles hiding beneath the surface, how does this present in social situations?  Work situations?

Jordan: I believe in social situations a majority of people assume I’m either nervous or shy. I get told quite often that I am so shy. In reality, I’m not really that shy. I believe everybody can be to a certain extent. It may also look like in work situations that I don’t know what I’m doing, since my speaking is at a slower pace than others with word difficulty. Others have came up to me and asked, “Have you got that ‘good good’?” I asked, “No, why do you ask that?” He asked “Aren’t you high?” I said “No, what would make you think that?” Then he didn’t answer, and he handed me my tray of food. Other assumptions about me being under the influence of drugs has also happened with police officers and doctors. We will get to that part soon. 

Mikey: In social situations, with friends, I am very confident and outgoing but it takes a long time to reach this level of comfort. I put up protective walls and only those with the patience to keep chipping away and get to know me get to meet the real me. If it’s a social event where I don’t know many of the people attending then I probably come across as extremely quiet and shy. Maybe even being mistaken as rude, although this really isn’t the case.

6. It has been reported that individuals with apraxia struggle with foreign language in highschool.  Did either of you and if so what accommodations were made? 

Jordan: I did struggle with foreign language, since it does rely on pronouncing the words correctly. Because of my speech disorder, grading based on pronunciation isn’t practical. In high school, they essentially counted the credits without participation in class. In college, I’m actually exempted from foreign language classes. The accommodation board wants to make sure my speech isn’t critiqued by professors. 

Mikey: I never studied a foreign language in school. I was so far behind in all my other lessons, due to my severe struggles with literacy, that I had extra English lessons when everyone else was learning French. Everyone thought that this would be more beneficial to me than trying to learn a foreign language.

7. Have you found people in the general public to still be rude or intolerant of your speech differences?  If so how?

Jordan: Yes. I’ve had people in customer service tell me if I don’t speak so slow they’d take my order. I’ve had doctors say “Well, Verbal Apraxia seems to be a speech issue. This doesn’t affect your reading or anything else.” Meanwhile I didn’t grasp reading until I was nine years old. I’ve had people try to rush my speaking, laugh at me, and say “Any day now buddy.” The general public wants fast and immediate speech responses. It’s because we live in a world where we are constantly going. My general speaking may take some more time. It doesn’t make it a bad thing, everybody’s voice is different. It just seems like if you don’t fit the “norm” you can be considered an inconvenience.

Mikey: I have very rarely experienced any rudeness or intolerance because of my speech issues. I have only had 1 incident when a bus driver asked why I was being stupid as he didn’t understand me and this situation was very quickly dealt with, ending in an apology and another person being educated in Verbal Dyspraxia. I have had some people ask about my speech as they are genuinely interested in learning more about my diagnosis. When we get into a conversation with people that we meet in social situations (as a family) we find out that they had just assumed that I was hard of hearing, like my dad. I am still very much in the safety net of education though as I haven’t ventured out into, the slightly less forgiving, working world yet.

8. Have either of you had a run in with law enforcement and were mistaken for being under the influence of alcohol or drugs?  If so, how was it handled? 

Jordan: I was pulling out of a gas station one night, and I forgot to immediately turn on my headlights until I pulled out. The police officer pulled me over, and I asked why was I pulled over? He said it was because I didn’t turn on my headlights until after. I responded with “Oh yeah, I didn’t realize I didn’t have them on until after I left. I’m sorry.” He then asked me, “Are you drunk?” I said, “No sir.” He then asked, “Are you high then?” I said, “No sir?” He then asked me if I’d ever drank, ever smoked, and continually asked these two questions five times over each. Each time he would re-ask the question, in this ten question trivia game of his, my speech would become more disorganized, because of the pressure of the situation. He was smirking. I’m sure in his mind the assumption was “When people lie, their speech becomes more disorganized.” He then let me go after his game was over. 

Mikey: No, thankfully I have never had a run in with the law.

9. Person first language (I’m a person with apraxia versus I’m apraxic/dyspraxic) is a hot button topic.  It used to be, person first language was the law of the land until individuals with autism started saying they wanted to be referred to as autistic.  Do either of you have a preference?

Jordan: I don’t really have a preference. I feel like the message that comes with “I’m an individual who has Apraxia” serves a reminder to me, that I am more than my Apraxia. However, I know this even if this is said or not. I feel like in our day and age, more people are owning what makes them who they are. I feel like saying I’m apraxic, doesn’t take away that at core, I’m a human being.

Mikey: I have no preference, it’s not something that bothers me. I am a person who lives with verbal dyspraxia/apraxia and in my mind that is not going to change whatever term someone else chooses to use.

10. What final message do you have for others who may be “adulting with apraxia” in the shadows? 

Jordan: Apraxia is a tricky, still very poorly understood, neurological based condition that isn’t outgrown. I’m sorry if the term, Childhood Apraxia of Speech, made you also believe as a kid, that this is only a condition present in childhood. You didn’t do anything wrong, so please don’t ever blame your child self. Have compassion for yourself and how far you’ve come. Self comparing yourself to a person without your condition is a toxic. Would you ever compare an individual in a wheelchair with an able bodied person? 
If you would like to go back to speech therapy, it isn’t just for kids. If you’re ever feeling any negative mental health side effects from living with Verbal Apraxia, reach out for help. I know these resources aren’t always accessible for everybody, but at least talk with someone. Know that you aren’t alone. I hope one day I can hear your story. I want to actually. Literally message me, I’ll be cheering you on.

Mikey: Don’t be ashamed of your diagnosis, talk to others, let your employers know which areas you struggle with. Be honest about your feelings with those around you and more importantly be honest with yourself. The term Childhood Apraxia of Speech is misleading, this diagnosis doesn’t just disappear when you become an adult. You really are not alone, there are many of us living with verbal dyspraxia/apraxia as adults. If anyone ever needs to talk, I am always ready to listen.

You two are amazing and as a mother to a child with apraxia but also as a speech/language pathologist I can’t thank you enough for your bravery, insights, transparency, hope, honesty and encouragment to those living with your diagnosis. I can’t wait to see what the future has in store for you both!

SLP Mommy of Apraxia is a website dedicated to disseminating research, information, and stories about Childhood Apraxia of Speech (aka verbal apraxia, aka verbal dyspraxia). Follow us on Facebook, Instagram, YouTube