On the other side: Interview with Kelly, a mom who has a teenager with CAS
Hi Kelly! I’m so thrilled to have you guest post! Your daughter Reagan’s post was a hit. Parents, especially in the early stages of an apraxia diagnosis, are really looking for hope. Since CAS was not officially recognized until 2007 by the American Speech and Language Hearing Association (ASHA), older children like Reagan, or adults with CAS may or may not have known that was their speech disorder. If you are familiar with my story and Ronda Rousey, she did not know until I handed her the CASANA brochure that she had apraxia!
That being said, I have so many questions for you! I know parents and my readers will find you just as inspirational as Reagan!
- In the TV interview, you said she was dx at 2 ½ by a developmental pediatrician. That is very early to be dx, and impressive to me since CAS was not well known then. Also, not many people today, including myself a couple years ago, know that there is such a doctor as a developmental pediatrician who is different than just your regular pediatrician. Can you elaborate on your journey to her diagnosis?
Reagan’s pediatrician told me she would talk when she felt like it – Reagan had repetitive ear infections and had her 1st set of tubes at 2 ½. Her pediatrician said they would send a referral for the county to interview Reagan for speech and hearing. I also went to an audiologist.
I found out from the audiologist that Reagan had spent most of her life not hearing because of the fluid in her ears. I fired the pediatrician and went to a new pediatrician with a background in speech pathology. Reagan started speech, OT & PT 3 times a week at her daycare.
When Reagan was 5, Dr. Nancy Roizen, developmental pediatrician moved to Syracuse University Hospital. Her husband, Michael Roizen was the Dean of the medical school. And also partners with Dr. Oz. Dr. Nancy Roizen did extensive testing and was diagnosed formally with severe speech apraxia.
2.) The TV reported that Reagan was enrolled in speech therapy every day. It was fascinating for me to read that she didn’t remember her early days of speech therapy, especially since the news reported she had it every day. What did therapy look like and where did she receive it?
Reagan was enrolled in a day school which was very structured. She would have speech therapy on the playground – swinging learning her a, b, c’s. Counting. They made speech, OT and PT very fun so it was always part of her day and not “therapy”. One of the schools she attended was Jowonio in Syracuse, New York.
- You said that Reagan didn’t speak a sentence until she was 9. I may have had my over-sensitive apraxia mommy radar on, but it looked to me like you were trying not to cry. I truly understand as a fellow apraxia mommy how heartbreaking that must have been. What was your most heartbreaking experience with apraxia and what would you say to parents who have children right now who are school age and still struggling to speak a word or sentence?
Your mommy radar was spot on. I was ready to lose it. Reagan was 5 and my other daughter Riley was 2 ½. A therapist at school stopped me in the hall as I was leaving to head to work. She said, “I just don’t know how you manage it all.” I burst into tears. I had never cried over Reagan’s diagnosis. Jowonio school is well known for working with special needs children and typical children. When I would look around at children in wheelchairs, children with chronic health issues, I felt fortunate that Reagan was healthy and very happy.
On your journey with your child you must remember that they are children. You need to sometimes just let them go play and loosen the reins on therapy and homework. It can be overwhelming to you and your child.
Reagan is a typical child with a speech disorder that affects her reading and writing. Reagan has always thought she was fine; it was the person listening to her that had the problem.
4.) Many parents, including myself are terrified of bullying and just the ability to make friends. Reagan appears to be so self-confident and well rounded. Did she experience any bullying and how has her friendships been? What do you advise parents in regard to ensuring our children grow up with Reagan’s confidence?
Reagan was made fun of in 4th grade. They thought she was deaf. Reagan and her speech pathologist put on a presentation in front of the class so that she could educate her classmates on apraxia. Reagan has a few friends and knows many people. Reagan works and is a senior in high school. She is quite busy so she may see her friends for an outing once on the weekend and that’s about it for the week.
If someone made fun of Reagan, Reagan thought it was their problem, not hers. Having a sibling close in age made it easier for Reagan to manage friends.
5.) I always say life is about lessons, and I’m sure you have learned many through Reagan. What has your experience with Reagan and apraxia taught you, if any?
Reagan can do anything she sets her mind to. I just need to back away and let her grow on her own time table. No helicopter mom for her.
Example…When you drop your child off for swim lessons and you want to tell the teacher she has speech apraxia and she understands but cannot speak that well….that’s it. Don’t say anything else. Reagan just wants to be treated like every other kid.
6.) Is there anything else you would like to add?
Patience and perseverance. If you have any questions, don’t hesitate to email me. I would be happy to answer any questions.
Thank you so much Kelly for agreeing to this interview. It has truly been a pleasure getting to know Reagan, and I’m thrilled to speak to the mama who knows the intimate details. Your daughter is a gem, and she is so fortunate to have a mother like you.
Thank you! When Reagan was little and the doctors asked me if Reagan had discipline problems, I would laugh and say,
“Reagan was born with wings. She is an angel.” And she is 🙂
Kel
ly is a married mother of 2 teenage girls. She’s from Syracuse, New York but is currently residing in Iowa. She worked full time in Syracuse as a paralegal, and now works as a mortgage analyst in Des Moines. If you would like to contact her, she is happy to answer any questions via email@ klcrabtree7