Faye’s Story

RebeccaFaye just turned 3 in April. She was a full-term, healthy baby. She was a late walker at 19 months and was diagnosed with hypotonia (low tone) and Globally Developmentally Delayed at time of walking. She began PT and wearing ankle foot orthosis (AFOs) at 22 months. She was diagnosed with Dyspraxia in September 2013. Since she was 19 months old, she has been involved with our state’s Early Intervention (EI) program. Our EI team was illiterate to the Dyspraxia diagnosis. Faye has been receiving regular PT and aquatic therapy through Children’s Rehab since aging out of the EI program. She receives speech through the school system and has had a dire need of OT since September 2013 (through her neurologist), but has yet to receive it. EI did not see a need for OT and sensory therapy and, therefore, did not implement services despite my knowledge in the field and will to fight for my daughter. We hope that through volunteer medical help, she will be picked up for OT services.

Faye is a bright, social girl and is well behaved—an added bonus for a 3 year old! She loves to play pretend and “wrestle” with her big brother. Faye is a dedicated best friend. She is such a joy to be around, and her smile lights up the room!

When Faye began speaking, her speech was immature. She then began blocking and leaving out syllables to the words. Her hearing test came back excellent, in comparison with children older, so that wasn’t a concern. As her speech progressed, her fluency worsened. She now stutters 80% of her conversation. I’ve noticed that when she is tired it is worse, just as is her overall body tone. She is super flexible and continues to wear AFOs for support of her feet and ankles. She tends to roll her ankles frequently and her flat, pronated feet get sore pretty quickly. When this tiring occurs, her leg naturally drags behind and she prefers to take frequent breaks. As she is getting older, I notice different little quirks all the time. Different things that she needs help with, from getting dressed, to not having the strength to get on and off the potty herself. It is always something new. We work through it together.

Her processing from brain to the actual task is slower. Thought is given, she’s uncoordinated, and directions need prompting. She is physically slower than her peers. With my special education background, I feel that the activities I do with her are great for all senses. We work with putty, rice, lots of fine-motor activities, among other fun hands-on stuff (she loves crafts!), and the trampoline for gross-motor play. I am very proactive. Faye complains that her hand hurts when she is coloring too long. Faye enjoys her weighted lap turtle, backpack and other proprioceptive “therapies”. Due to her dis-fluency, she often gets frustrated when she can’t get the words out. When she can’t tell us what she wants, it will result in a meltdown. She needs notice. If her day is interrupted without prompting, the rest of the day becomes history!

Besides “all of this”, she really has made some great strides within the past year. She no longer wears mid-calf to ankle braces and only requires ankle ones. She recently learned how to jump in place. She has learned some coping skills to help with frustrating situations. My overall concern is spreading awareness of Dyspraxia and making sure that by the time she is officially school age, that accommodations will be made and teachers will be educated on this diagnosis for her. The way I look at it is that 20 years ago ADHD was on the rise and we were being educated on that, then 10+ years ago education on Autism Spectrum Disorders, and now it needs to be Dyspraxia.

I look forward to the many more discoveries that she will experience. From my own personal motto “From balance to bliss and every inch-stone in between”.