P.O. Box 8524, Port St. Lucie, Florida 34952 help@cherab.org 772-335-5135

Success Stories

Many parents who have young children diagnosed with apraxia worry about their child’s future. You can help to inspire and raise hope by sharing your success story. Please email your success stories.

The families on this page have generously offered to reach out to help others via email. Because these parents and children all can help you from their unique “been there done that” perspective, you may wish to take advantage of their outreach offer. We will be adding more families of children who “grew up” with apraxia soon.

Both Rachel and Khalid presented, “What Happens To A Child With Apraxia When They Grow Up?” and were featured on Inside Edition TV. View Khalid and his mom Cindy’s “Trip to NY” here.

Beyond Hope

Written by Khalid, age 13

Khalid, far right, with his brother and sister

Khalid was one of our speakers at our August 7, 2000 meeting. See who are speakers are for our upcoming meeting.I’m Khalid and I’m almost 14 years old. I was born with apraxia that affected my speech and limbs (motor planning). This is about my life, and how I have lived it to the fullest no matter what struggles I had. My most difficult years were grades K -6th. I had severe apraxia when I was 2 years old. I had to go through lots of therapy for ST and OT. I also had problems with kids understanding my speech and some teased me. I did and still have a hard time with my writing and reading. What helped me through that is my parents who helped me out a lot.

I remember in kindergarten I would try to say something and people could not understand me. I thought I was speaking right, thinking that other kids were the ones confused. In 2nd grade, I had the best teacher yet. She showed me how to express my thoughts in different ways besides talking and writing. It’s hard to explain how much she helped me. That year I had lots of fun in that class. We learned and we had so much fun. That is very rare! In third grade, I became aware of how I talked. In speech therapy, my therapist had me listened to a recording of my voice, and that’s when I realized how different I talked compared to other kids. I had a great therapist named Peter, which was really important to me. He was the one that discovered I had apraxia at age 8. We liked each other and worked hard together. In 3rd, 4th and 5th grade the teasing bugged. But I felt good about myself playing tetherball. I always won my turn! I looked at other things I was really good at. Because of this, it helped me, my self-worth. In 5th grade, I had a cool teacher that helped me out in things I did. He was great with all the students and me.

Many of my friends in elementary had some kind of disability. This is fine with me because, I didn’t care how they talked or what they looked like. I always liked to play different things with them. When I was in California during my first grade year I met this kid and we became friends. His ears were not even and had he wore a hearing aid. He was teased a lot about that. I think it helped us out being friends. I felt bad when we let back to my home state. He was a good friend I left behind. When I was bigger I made other friends, some who had things going on, like a friend who was blind, another friend had ADHD, Learning difficulties, and another dealt with deaf issues. I was cool with them and they were cool with me.

The best part of my life was playing sports. I played soccer since I was 5 to 11 years old. I only had one good coach out there that was actually fun. He taught the team how to play the game well. We rarely scored a goal, but we were about being a team and yes winning is good, but to finish last having a blast was a cool thing. I wish there were more coaches more like him in the game. Most coaches felt I was too slow to play soccer. So I sat out of the game often. I was that bench kid. I did not understand until I was older, that putting it together with verbal apraxia, I also had limb apraxia which affected my feet and hands. That’s why my coordination and speed was not good for sports in younger years. I had to practice drills over and over. The work paid off, I became the team’s goalie my last year of soccer. Not a bad way to end my soccer years, basketball was the new challenge on my mind.

Toward the end of 5th grade, I decided to play basketball. Because of the apraxia in my hands, I stuck with my shot so I stayed at the defense end of the court. I blocked every shot the other team would try to shoot. Until I was able to shoot the ball, this was the most I could do in skills. Then in sixth grade, I was better at my shots and I made scores! My friends say it’s a miracle, but I think it takes skills and lots of practice. I have continued to improve my game every year. In 7th grade I made the basketball team at my school. I even started the first two games of the season. This was tough for me, to be responsible for my grades and my game! One of my grades went down to a D+ and I had to make a C+ to stay on the team. That was my dad’s and the school’s rule to keep grades up to stay on the team. I wanted it bad enough and brought my grade up to a B. In basketball over the summer I improved on low post moves and a better range. Plus I can run faster, jump higher and shoot 3 pointers. I believe it will be another great year with the team.

Now that I’m going into 8th grade, I have hope that I will have another successful year. I want to make the honor roll like I did before. This year I will have to attend therapy for writing. I can’t write well because it’s hard to put down on paper everything I want to say and my hand’s gets tired going over mistakes. I’m trying to stay on top of it because this will help my written expression. Occupational therapy will also help with basketball and improve my game average.

My message to kids who have apraxia: I have had some rough days with apraxia, but don’t let it get the best of you. Things have ways of looking up I promise. When I was hard on myself my self-esteem went down. Then one day I noticed that every person in the world has to face some kind of problem. I’m not alone, everyone has to work at something challenging. Apraxia is noticeable, but with learning coping strategies for speech it helped me get through some tough spots. Look for people who believe in you. I liked being around people like that. Forget the hang-ups and find your passion in what you like to do. For me it is sports! I had to try at stuff, sometimes again and again until it finally happened. If I did not give it a try, I would miss out on the chance of wondering if I could have done it. Not knowing would have bothered me more. So go for the good stuff in life and believe that you can make your own thing happen!

I am only one. But still,
I am one. I cannot do
Everything, but still
I can do something. And
because I cannot do
everything, I will not
refuse to do the
something that I can do.
~Helen Keller ~

Khalid age 3

Khalid age 15 writes:
” I’d like to promote Apraxia Awareness because: I want to tell kids that they can still have a normal life. Doing things I wanted helped me to forget my problems. Life is meant to live to the fullest, you have to want that bad. I know I wanted that. I think kids with Limb Apraxia should play lots of sports because it will help strengthen their muscles and their coordination. Sports helped me face my fears. Just practice and you will get better at stuff.

Participating in events helped my Apraxia over time. For speech, you should have an extremely dedicated therapist who you like. There were times I was frustrated with all the therapy, but my therapist made it fun when we were together. My speech therapist is the one who introduced me to basketball. When we played the game this motivated me to use my words. I love the game. I play basketball every day. Apraxia is tough to have, but there is hope to go on. Don’t be afraid, and know you are not alone, were in this together.

Notes from Cindy (Khalid’s Mom)

Khalid at age 3 was a child of few words and now he is a teenager that is fully intelligible in speech. His accomplishments this past year has been impressive. Though Khalid still has struggled in his written language, he has come far in many areas of academics. He was tested this past May and is now reading at an 8.3 year level. Khalid works hard at keeping his grades up and strives to stay on the honor roll. Khalid won 2nd place in the Regional National History Day. Soon thereafter he participated in the State Competition in National History Day 2000. He participated in a stage performance, for both Regional and State.

In the State Competition, Khalid’s long hours of dynamic work were recognized and he received 2 awards. Khalid was awarded “Honorable Mention” for best overall primary resources in written work for presentation, and also awarded 3rd place in the “Performance” category in the state competition. To end his seventh-grade year, Khalid won an outstanding leadership award through his school, for excellence in teamwork. We are and have always been so proud of Khalid. He’s an awesome kid! He is looking forward to his eighth-grade year! As far as socializing amongst his peers, Khalid has made new friends. However among his favorites are still those from past years.

Just of few of Khalid’s many educational and sporting achievements!

Rachel’s Story

(Rachel’s mom believes that the children diagnosed with apraxia today have a much better chance since there is so much more knowledge about apraxia and appropriate therapy. For example, the first time Rachel had oral motor therapy, which is a therapy used for apraxia and other speech disorders, was in high school, and it wasn’t comfortable to do at that age.

Knowing how few people today know about apraxia when Rachel was diagnosed 20 years ago, there obviously was much less information and understanding. Rachel’s mom became such an advocate for Rachel that she became a special ed teacher!)

Ever since I saw the article in the Star-Ledger about your son Tanner, I’ve been meaning to write. I too have a child that was diagnosed with apraxia at an early age. Rachel is now 21 and a second-year college student.

I noticed early on that her language development was below that of her peers. She often seemed to be confused and would become terribly frustrated because she could not communicate her needs. At the age of 2, Rachel had very little language and what she did say was pretty unintelligible. She began intensive speech therapy which continued all through high school. In addition to the apraxia, she has other learning disabilities, that always made school difficult. Socially she has always been behind her peers, which is often heartbreaking. Rachel still has difficulty with the pronunciation of many multi-syllabic words. The quality of her speech is different, and still today I often have to ask her to repeat what she has said.

Academically she has worked hard and has always had a positive attitude. She is an early childhood education major and wishes to work with children with learning disabilities. Two years ago she was honored by the ARC of Somerset County for her volunteer work with children with disabilities and this summer she is a camp counselor.

As you can see, we are extremely pleased with all that she has accomplished. It hasn’t been easy for any of us and many tears have been shed over the years.

There were never any support groups when she was growing up. It was hard to always feel alone. I dealt with the issues by learning all that I could about language and learning disabilities, eventually becoming a special education teacher.

The biggest advice one can offer anyone in a situation like this is an advocate for your child and teach them to be an advocate for themselves. Also never give up. Although your child may not learn things quickly, as long as they are learning there is hope.

Good luck to you and your group.

Susan

Susan is a Special Ed teacher as well as Rachel’s mom. You can email Susan or Rachel if you have questions or comments.

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