Down Syndrome Awareness Month: Why (& How) to Participate
From the very start, it has been part of our lifeblood as a company to build a flourishing world where children are cherished. You may know that our Co-CEO, Travis Wilson, has a son named Jack who has Down syndrome. So, Noonday’s connection to children with special needs runs deep.
October is Down Syndrome Awareness Month, and we are excited to chat with two members of our Ambassador community, Jill Womack and Jill Moerschell, who will tell us more about Down syndrome and how you can participate in Down Syndrome Awareness Month!
Hey, Jill W. and Jill M! Could you tell us more about yourselves?
Jill W. – I am a pediatric physical therapist, a wife, mom of two, and a Noonday Collection Ambassador. Physical therapists are advocates for our patients. We work with our patients long term and want to see them thrive however possible. I personally think that is very similar to our role as Ambassadors. We collaborate with our Artisan Partners long term so that they too can thrive in their communities.We can all benefit from support at times. I personally have benefited from support of a pelvic floor physical therapist after a significant injury running a half marathon.
Supporting others is just what we do! Specifically, PTs support patients with Down syndrome by strengthening muscles to support low muscle tone, protecting joints for a lifetime of use, and supporting pulmonary endurance for a lifetime of cardiovascular health.
Jill M. – I’m a Noonday Collection Ambassador and mom to four kids. My youngest child, Matthew, is sever years old and has a Down syndrome diagnosis. Matthew is a large part of why I decided to become an Ambassador. After experiencing some misconceptions about Down Syndrome, I realized I needed to participate more in the world and do what I could to hopefully make a lasting and positive impact for him and for other people.
Having a child with Down syndrome has opened my eyes and heart to the importance of every person feeling their worth and to embrace differences. He inspires me to do more and care more. I’m happy to be able to share a little bit about Down syndrome and Down Syndrome Awareness Month. Thanks for having me!
So, What is Down syndrome and why do we recognize Down Syndrome Awareness Month?
Jill W. – Down syndrome occurs when an individual has a full or partial third copy of chromosome 21. There are three types of Down syndrome, but the most common is Trisomy 21. The effect of an additional chromosome for an individual varies and cannot be predicted at birth. Generally, there are cognitive delays, lower muscle tone, and potential increased risk for certain medical conditions. However, medical, education, and therapy advances are helping individuals with Down syndrome lead healthier lives where they are able to achieve their dreams. The month of October is designated as Down Syndrome Awareness Month to celebrate and advocate with and for individuals with Down syndrome. At Noonday Collection we value diversity and continually strive to be more inclusive and recognizing Down Syndrome Awareness Month is part of these values.
What is something as a parent you wish people in general knew about Down syndrome or a Down syndrome diagnosis? What do you wish your therapists knew?
Jill M. – We talk people-first language a lot, but really think about what that means. Individuals with a Down syndrome diagnosis are individuals first. Individuals with different interests, strengths, challenges, and family stories. My son has major ball throwing skills, loves to run and dance, play with his siblings, listen to the Beatles, and a whole lot more. Down syndrome doesn’t define who he is. It may shape his life in varying ways, but it is not all of him by any means.
As for what I wish therapists knew: Honestly, we have had predominantly wonderful experiences with therapists where we feel like true partners. Speaking generally, I think the main thing I would want a therapist to know is the same as above: to treat each individual with Down syndrome instead of by the books. Be willing to think outside the box if needed. And, wherever possible, empower the parents to continue therapy when you are not there by showing them practical ways to work on things that are not overwhelming and consider the child and families. But don’t be afraid to help us challenge our kids!
As a therapist?
Jill W. – I wish parents knew that they may need to really advocate for their kids. Not all therapists, physicians, school systems, or insurance programs are going to go the extra mile. I wish adults with Down syndrome knew that they could get support from a PT to help support their joints and long-term mobility and physical health. Physical therapy can support all people (including those with Down syndrome) throughout the lifespan.
Many kids with DS do not qualify for PT through insurance or have to do tele-therapy. For parents/caregivers where this is the case, what are some ways we can incorporate PT into home life?
Jill W. – So, honestly this is a state funding issue and something that I personally feel needs more advocacy.
The biggest things that parents can do to support children with Down syndrome is to support that overall core strength in any way possible. Very early on, children should be encouraged to spend time in flexion like resting in sidelying. They can also be supported in sitting. For example, supported sitting with a Boppy pillow around them. They may need support to stand such as orthotics that are designed for children with lower muscle tone.
I also always emphasize the importance of crawling for development. Crawling allows children to spend more time in a flexed position, and it strengthens their shoulders, arms, and hands. Children with Down syndrome sometimes have difficulty with grip/hand strength, and crawling helps with that. Once children are able to walk, I encourage them to climb for strengthening, climb up stairs at home, or climb on a pillow fort. Children can also crawl through a tunnel. When children are outside they can climb on playground equipment or rock walls. Climbing/crawling is great global strengthening.
Children can also play games with their feet on the wall to help strengthen their core. For example, have children lay down on their backs and use their feet to “paint” the door/window with shaving cream. Have children practice doing sit ups from an inclined surface to place stickers on a wall. It is important to remember that children, just like adults, need repetition to truly strengthen muscle. Children need to do an activity several times to develop strength. They also need to develop confidence.
I also would focus on coordination tasks. These activities help with both body coordination and help children learn to use both sides of their brain. For example, have children rest on their backs and touch their elbow to the opposite knee. This works on core strength and coordination. I personally love using the natural environment when possible. Ask your child to walk along a brick wall barrier to practice his/her balance. Ask children to walk up a steep hill. Practice rolling down the hill. The sensory experience of grass and rocks is great for everyone!
During our current COVID-19 crisis, tele-therapy has become more available for patients. Tele-therapy sessions can help therapists stay connected to their patients while involving parents into treatment sessions to an even greater degree. Many children are currently benefiting from virtual treatment sessions while taking extra safety precautions due to global health concerns.
Jill M. – These are great! I’m taking notes to add what we are not already doing! And I agree on the more outside and in regular life, the better. The other day, Matthew reached up to pluck leaves off a tree, then tore them into pieces and threw them down a slide. We counted, talked about colors, prepositions, and climbed the slide. That was cognitive, speech, interaction, occupational therapy, and physical therapy all rolled into one and it was fun for both of us! Don’t think you have to do therapy in some formal way as a parent. Explore the world. It might be a little more challenging to do that right now, but even a walk around the block yields all sorts-of wonderful opportunities to learn, observe, and grow!
What is one of the biggest surprises or takeaways you have learned as a parent? What has having an individual with a Down syndrome diagnosis in your life taught you about life in general?
Jill M. – Every individual with a Down syndrome diagnosis I know is strong, works hard, and is listening. The challenges that may occur can be frustrating for Matthew, but he continues to grow and learn and be curious. Matthew also inspires me with his ability to move on from anger or sadness. He feels those harder feelings, but he just doesn’t let them overtake him. He’s shown me, his dad, and his siblings all how to forgive quicker, to love more, and to embrace every day and every accomplishment instead of rushing around. We take and celebrate moments and breaths in life that maybe we didn’t before, and our entire family is better for it!
What about as a therapist?
Jill W. – As a therapist, I have been surprised at how hard children with Down syndrome work to overcome a society that has improved but is still not fully supportive. Children with Down syndrome often have hypotonia (low muscle tone throughout their bodies). Simple tasks require so much more effort. This affects everything that they do, from climbing up stairs, to speaking with the tiny muscles that our mouths use, and even to brushing their teeth.
What are ways to participate in Down Syndrome Awareness Month?
Jill W. and Jill M. – Participate in virtual walks celebrating individuals with Down syndrome, support businesses owned and committed to employing people with Down syndrome and disabilities in general, or follow individuals with Down syndrome on social media. Look for opportunities to get to know individuals with Down syndrome – maybe you have a local organization with volunteer opportunities. If you are a parent and have traditional learner kids, encourage them to seek out ways to make friends with individuals with disabilities in general. That friendship (or friendships) could positively impact both of the children’s lives! Talk about what Down syndrome is and what it isn’t. If your school doesn’t recognize this month, share with the school administration about ways that they can, whether there are kids with Down syndrome there or not. These kinds of interactions and conversations can create a powerful and long-lasting impact for everyone!