Friday, October 31, 2014

My name is J.R.


**Names changed to practice internet safety and protect the children.
Hello. My name is “JR” and one of the conditions I have is called apraxia (speech and motor). It is a neurological condition where the signals from my brain get lost before they make it to my muscles and don’t make my muscles work like I want them to. It makes it very hard for me to speak, and I often fall on the ground for no reason or bump into things because I can’t get my muscles to do what I want them to do.
You may have heard of speech apraxia before. When I was just 18 months old I only used one word “dada”. “Mommy” or even “Mama” was always hard for me and it took a long time before I could call my mom anything using my voice. As I have been growing up for many years I could only point and grunt to communicate my needs. Mommy and Daddy had to play lots and lots of guessing games and yes/no games to figure out what I wanted. It was frustrating for all of us. Mommy and Daddy were persistent and got me help from a doctor with speech therapy that started when I was almost 3. As I learned to try more words my talking was using almost all vowels. When I did start to gain a few words I called my mom “bubba” and she gladly accepted that title. Only my mommy, daddy and brother could understand maybe half of what I would say. Most people that didn’t know me couldn’t understand anything.

I am 4 ½ years old now! I have worked very hard for almost 2 years and I have come a very long way! Now - If I don’t act shy and get comfortable enough to talk to you, you may be able to actually understand a little more than half of what I say. Mommy, Daddy, and brother can now understand about 80% of what I say!

One of the hardest things for me is when I get emotional or my surroundings get overwhleming. It doesn’t matter if it is super happy, sad, excited, mad, frustrated, curious, or shy. Any emotion takes over my brain and locks up my words. I just can’t get them out sometimes no matter how hard I try. It makes me sad and mad.

I also have trouble with motor apraxia. My muscles just don’t always get those brain signals and I bump into things all of the time and fall a lot. I am in physical therapy, Occupational Therapy, Speech Therapy, Habilitation, and Development Preschool to help me with all of my challenges.
We don’t know if I will ever be like everyone else with my muscles walking and talking. But I have come a long way and mommy, daddy, and brother are very proud of me and how far I have come. I am so grateful for all of the support I have and more than anything just want to be treated like and do things all of the other kids do.

Thanks for reading this. Chances are we met recently and mommy pointed you in this direction to read more about our family. If so, it was nice to meet you! Mommy and Daddy love to support other parents and families. If you ever have any questions or just someone to talk to I know mommy would love to meet, chat, or even just email with you. She is such a nice lady. Her name is Becky and you can email her at livinghopejourney@hotmail.com.
Thanks again.

“JR”

For more information on speech apraxia you can go to www.apraxia-kids.org

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