Carolyn and Blake in January 2014
We are almost to the end of Down Syndrome Awareness Month. Can you imagine me having an entire month full of content primarily dedicated to Down Syndrome? This is a very mulit-dimensional topic and there is enough material for every day of the year (and beyond) really if I sat and broke it all down. Parenting a child with Down Syndrome is no joke, but it's also joyful.
Being an Occupational Therapist to someone with Down Syndrome is a fine balance of challenge and reward. Carolyn Myles (Occupational Therapist MEd, OTR/L) was assigned to Blake as part of the early start program in our county. He was 3 month's old when she came into Blake's life and I have been grateful ever since. She is a knowledgeable practitioner who truly cares about your child's success. We have received customized care and guidance from here and amazing tips and tricks for activities that cater to Blake's strengths, likes and to address his challenges.
Carolyn & I
She has agreed to share some of her wisdom and experience as it pertains to the Down Syndrome population and Blake!
The Role of Occupational Therapy with an Individual with Down Syndrome
Occupational therapy practitioners ask, "What matters to you?" not, "What's the matter with you?" In its simplest terms, occupational therapists help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (American Occupational Therapy Association – AOTA). We are trained in child development, neurology, medical conditions, psychosocial development and a range of therapeutic interventions.
We guide individuals with Down Syndrome and their families to help them master skills for independence and reach their potential! (Yamkovenko, 2008). Stephanie Yamkovenko, writer for AOTA, recommends that Occupational Therapy intervention should begin as soon as a diagnosis of Down Syndrome is established and could potentially continue throughout the individual’s life!
“An occupational therapist can help parents place expectations that are appropriate to the ability of the child,” says Asher, MA, OTR/L, chairperson of the AOTA’s Developmental Disabilities Special Interest Section.
For example, occupational therapy practitioners can help mothers whose children have feeding problems possibly due to weak muscles in the face. During childhood therapy can focus on mastering motor skills, especially fine motor skills, for independence overcoming potential challenges such as low muscle tone, loose ligaments, and visual and auditory deficits. (Bruni, 2001) Occupational therapists assist in school to facilitate fine and visual motor skill development to access to the curriculum as well as provide adaptations for optimal performance. Adults with Down Syndrome may benefit from therapy to maximize independent living skills and participation in healthy active recreation. The goal is always to enable the individual to “live life to the fullest” (Asher).
We, as Occupational therapists work with the whole person and our philosophy is commensurate with that of John Colman, President of the National Down Syndrome Society in 2008 when he stated “People with Down Syndrome, like everyone else, are people first, each with their own unique gifts to contribute.”
We provide our intervention and expertise in a variety of ways:
By:
- observing the child
- coaching the adults that interact with that child
- adapting the environment to provide the “just right challenge” for the child
- breaking down skills so that expectations are appropriate
- suggesting positioning or adaptations
- providing a range of play based, sensory motor, skill based therapies
- providing programs in school to promote and enhance sensory motor development
- address any sensory differences a child has and offer suggestions
- work with families to embed therapeutic activities into their own unique routine
- working as a member of the team to help children achieve their potential in life.
Finally, we understand that ALL children have varied personalities, temperaments and motivations. The true “art of therapy” is understanding and working with the whole child and discovering the “key” that unlocks their highest ability!
It has been my absolute pleasure during my Occupational therapy career to work with children with Down Syndrome.
I have often met these children as young babies, and watched them grow and develop. To me they are first and foremost children with their own personalities and temperaments and my goals are the same as for all children; to reach their highest potential.
I had the pleasure of meeting Blake and his family when he was just a few months old. He was always social and charming, and very early on showed his opinion regarding his likes and dislikes! For example, he loved books and would sit and turn the pages, but resisted the transition from a bottle to a sippy cup (many were tried!) and would throw it across the room!
Blake is quite the “sensory seeker” and the “art” of therapy with him has been to provide opportunities for him to have his sensory needs met so that he can use his body appropriately to develop his gross and fine motor skills. He enjoys climbing, and “crashing” and all kinds of active play.
At home now he enjoys being outside and wandering around his garden. Now the emphasis is on providing natural opportunities as he wanders to engage and explore – such as digging in sand or mud, drawing on his easel or on the ground with side walk chalk. The goal is to provide as many opportunities as possible to work on Blake’s motor skills in the most playful and natural way through his every day routine. Blake continues to have strong opinions and likes and dislikes! He responds best to peer modelling and is lucky to have his older sister Kaleigh as his very best therapist.
It was so rewarding to visit Blake recently at his preschool. He followed the class routine and played appropriately with his friends and the toys. He was just “one of the boys” with the train set, cars and toy garage. What an amazing example of inclusion working!
With the support and advocacy of his family, and appropriate therapeutic support when needed there is unlimited potential for what Blake can achieve. I feel so privileged to be a small part of his journey.
References
American Occupational Therapy Association – The Role of OT with persons with Down Sydrome – by Stephanie Yamkovenko
Bruni, M. (2001) Occupational therapy and the Child with Down Syndrome – http://www.ndss.org/Resources/Therapises-Development/Occupational-Therapy -Down-Syndrome
National Down Syndrome Society
