“I’m an apraxia person” The heartwarming story by a young man from Singapore of his long difficult journey to his discovery that he grew up with and is dealing with apraxia.
I received the following private message on Facebook from Lim who has provided a photo and permission to share. If there is any professional that can help or anyone that wants to share words of support for Lim, please leave a message in the comments.
“I’m Lim from Singapore
I’m 19 years old man and currently, I really have severe apraxia. Regarding my picture. Sorry. I can only give you one of my photos. This is the best picture I ever have. Being capture while I’m on vacation with my family
I prefer to be a low profile person & not socialize too much. Because I know my limitation. Even for me to write this chat. I have to check it multiple time to make sure I deliver my intended message to you. I am afraid I not being able to respond directly to other people when they’re communicating with me. If these things happen then surely our relationship is getting worst. That’s why I prefer to be a low profile & not socialize too much. So, I’m able to keep a neutral relationship with other people
I’ve inherited apraxia from my father which is also an apraxia person. Actually, I had undergone 4 stages in my life before I realize that I’m an apraxia person
Firstly, in the early stage, I thought that my bad communication skill is due to the worst education system in my family. This is because of my family, especially my father. He always speaking in a bad manner to communicate with us. Furthermore, he also is not confident in his speaking. Thus, I think my worst communication skill is because I’m following my father behavior.
After that, I made online research regarding my bad communication skills. & what I realize. Researchers state that whatever other person do to us. He/she can’t change our behaviors in life. Means that our behavior comes from us. Not others. So, this is a moment where I think that there must be something wrong with me that affecting the way I speak
This brings me to the speech stage. At this moment I had undergone an extreme speech therapy in my life. Approximately, I spend half of a day to do speech therapy. Every day non-stop I’m trying to improve my communication skills. I also had researched a few methodologies to improve my speaking and implement it. But, the problems still resist. & I’m unable to change the way I’m speaking.
While important, therapies only benefit a person until a certain level. The level when the people familiar & memorize it as knowledge. For me personally, I think that it’s not the main problems that causing apraxia.
Actually, the main problem for apraxia person is that.. the brain can’t be able to sync to the targeted muscle. The brain signal is somehow.. lagging.. or can’t be sent to targeted muscle at the right moment. These problems cause a mouth muscle to react in a different way & produces a sound in an incorrect manner. & due to these reasons. that’s why I’m stopping my speech therapy. Thus, I conclude that… speech therapy is not benefits for me. Instead, I rather spend my time doing research to find a solution for this problem
This brings me to a third stage. In this stage, I thinking that my problems may be is due to a physical limitation. Because I also realize that I’m having a problem which is breath through the mouth when to sleep. So, I suspect maybe I’m having a breathing & speaking problems.. such as enlarge turbinate, enlarge adenoid, enlarge tonsil, short/weak soft palate, tongue tie & vocal nodules. Thus, to clarify it, I personally seek a doctor in the hospital several times to check these symptoms. But, all of these doctors say that I’m normal. None of the symptoms occur on me.time. I’m a bit lost hope because I think if the symptom really occurs to me. Then, I can request a surgery to fix it. But, these things don’t happen. Thus, again… I personally research on the internet to find a solution to my problems
At this time. I’m a bit lost hope because I think if the symptoms really occur to me. Then, I can request a surgery to fix it. But, these things don’t happen. Thus, again… I personally research on the internet to find a solution to my problems
After a few moments of researching… I realize I’m an apraxia person. I’ve always had apraxia since a child to be specific. With apraxia, the brain signal is somehow.. not sync to respective muscle target. That’s why… most of the people can’t understand apraxia person speech. Because the muscle in the mouth for apraxia person is not synced with what they think at the moment. Again, I fell a bit loss of hope at this moment
I’m expecting for every critical disease… there must be surgery to fix it. At least we can see the treatment itself. But, for this disease, there is no proven surgery to fix it. Sad… But life must go on. So, I’m trying to seek supplements. And this is when I meet a Cherab foundation. Glad I joined this community. At least… I know there is someone that can help me with these problems.
This also is a reason why I’m seeking alternative supplements such as fish oil.
For me personally.. being an apraxia person is a very a tough full experience in my life. Most of the time, I’m alone. I’m isolated from a community. Even in my family. No one will hear my problems, even my mother. I have several times speak to my mother about my problems, apraxia. But most of the time… she always changed the topic.. seem that she doesn’t really care about my problems. Sad.. yes very Sad 😞 . I’m not expecting she to help me. But at least pls lend me the ears so that I can speak my problems
Thus, due to my limitation. I had decided to be a low profile person. I’m trying minimizing my speaking with other people.. & only talk when needed only. This doesn’t mean that I’m a shy or passive person. But instead, I try to be neutral in a relationship. Because the biggest problems in a relationship is a misunderstanding. & I don’t want these things to happen in my relationship with others. Apraxia person is having problems with speaking. Silent is the best solution for these problems.
In order to hide a weakness as apraxia person. I also decided to come with a solution which makes a confidence face all the time with mouth completely seal. The purpose of doing this is to minimize mistake to prevent bad first impression from other people. And, so far this method works well. Others people will respect your decision to be a silent.. & they don’t bother to distract us. Also, the purpose is to encourage people to greet us. Thus, apraxia person can speak less without worrying about others. Nice
& At this moment.. right now. I’m making another research find which part of the brain affecting most to an apraxia person. I need to identify it & seek treatments to cure these part of a brain. Hopefully, I will this answer soon. Let’s us together seek a solution for this disease. Hopefully, we all can discover a proven solution whether surgery or anything that can help to cure this apraxia. & I hope my tips benefits all other apraxia patients. So, yeah… that’s my apraxia story & how I overcome it. I’m very thankful to God for helping me to overcome these problems even though I alone all the time. Also thanks for your time to read it. I really appreciate that. At least there’s someone that can hear my problems.
Yeah, feel free to publish my writing. I also hope that I could help
So, again thanks for reading my message.
Cheers 🙂 Lim”
Again please show Lim support by leaving a message in the comments.
As time goes on there are more and more teens and young adults with apraxia. We have to accept this is not a developmental or childhood disorder, and as Lim so wisely states, apraxia is a neurological disorder, we have to search to another way to help those with apraxia outside of just speech therapy alone.
I have tried to get Lim to join YADA which is a support group for teens and young adults who grew up with apraxia or another impairment of speech I helped Kari start. and perhaps with more encouragement, he will, and will realize he’s not alone.
Lim is a member of the online Cherab Foundation support group on Facebook so will read your comments at the group too. If anyone wants to be in touch with Lim please contact me directly as he’s not yet comfortable contacting others. But I’m working on that with him!
LISA GENG
Author and President of The Cherab Foundation Lisa Geng got her start as a designer, patented inventor, and creator in the fashion, toy, and film industries, but after the early diagnosis of her young children with diagnosis including severe apraxia, hypotonia, sensory processing disorder, ADHD, CAPD, she entered the world of nonprofit, pilot studies, and advocacy. As the mother of two “late talkers,” she is the founder and president of the nonprofit CHERAB Foundation, co-author of the acclaimed book, The Late Talker, (St Martin’s Press 2003), and holds two patents and patents pending on IQed nutritional composition. Lisa has been serving as a parent advocate on an AAN Immunization Panel since 2015 and is a member of CUE through Cochrane US. Lisa is currently working on a second book, The Late Talker Grows Up and serves as a Late Talkers, Silent Voices executive producer. She lives on the Treasure Coast of Florida.