Special Needs Parenting: Q & A with a Parent of a Child with Down Syndrome

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World Down Syndrome Day (WDSD) is observed on March 21. People will be raising awareness and celebrating kids and adults with Down syndrome all around the world. 

What is Down syndrome? According to the Canadian Down Syndrome Society, “Down syndrome is a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender, and socio-economic lines. One in every 781 babies born in Canada has Down syndrome. Down syndrome is associated with chromosome 21 and there are three types: Trisomy 21, Translocation, and Mosaicism.”

To celebrate World Down Syndrome Day at CTN, we are featuring a special interview with one of our families. Patti and her husband Domenic live in York Region with their 11 year-old son, Joseph, who has Down syndrome and autism spectrum disorder (ASD). Joseph is complete joy, a happy child and has been since birth. He loves to swim, do karate and adores music! His favourite thing in the whole world is his iPad and he is proficient at finding his favourite apps and music! 

We asked Patti some questions so that we could get to know Joseph better and share their experience with other families to celebrate World Down Syndrome Day.

1. How does your son’s diagnosis impact your life or the life of other family members?
When Joseph was born it was a challenge from a health standpoint for our entire extended family and friends circle. He did not come home for almost two months and that was tough. We had a lot of support and were guided by “experts” for during the first two years.  There were many times when we really needed to trust the experts and be okay with not knowing what to do next.  Joseph also showed us the way by just being himself.  He moved through his health issues and we started to have a sense of relief. Joseph is non-verbal for the most part and does communicate using his iPad, some words, gestures and prompts.  He still has toileting issues.  He has sensory challenges with eating lumpy textures therefore his food is pureed. What this means for us is that we never leave the house without food for him.  He has challenges with going to the dentist and to get his haircut again due to his sensory sensitivities.  Health is what is most important to us and we are grateful that he is healthy and thriving.

2.What has been your greatest challenge as his mom?
I think always wondering if you are doing enough and if the choices you are making are the right ones. Ironically, I think that is what most moms feel, even if they have children who are typically developing.  “Mom guilt” has been the hardest part for me and because he is non-verbal, really trying to understand what he is asking for and wanting.

3.What has been your greatest victory as his mom? 
We celebrate the small moments and milestones that occur. These small moments are the same for us as a three-point winning basket in a Raptors game.  We focus on his strengths and what he CAN do and try not to dwell on what he can’t do YET.

4.What have been the most significant changes, as your son has gotten older?
He is starting now to show some independence and exert his voice where he can.  For instance, I sometimes go sit with him when he is using his iPad and he will gesture and say “GO AWAY” which just makes my husband and I laugh.  He is on the cusp of puberty and we are starting to see those signs.  He likes to sleep in and can be lazy these days to get up in the morning.  We also still have ongoing safety issues as he really does not understand what might be harmful to him. 

5.Were there tough times when you reached out for support? Where have you found the greatest source of help?
We have found the greatest source of support in our families and friends. One of the hardest parts for my husband and I have been to find babysitters other than family and friends because of the complexity of leaving him with someone who doesn’t really know him. We have met so many wonderful people on our journey with Joseph. Early Intervention Services (EIS) was a life saver in the early years as well as a partnership with Children’s Treatment Network (CTN) service providers and support from the Special Education Team at York Region District School Board (YRDSB). His teachers, Educational Assistants (EA)’s have been wonderful both at school and at his daycare. We have also had a lot of support by being members of Down Syndrome Association of York Region (DSAYR).  There are families who have paved the way before us and have been instrumental in guiding us and others that came after them with some great advice and resources. It has provided us with a sense of community and hope over the past 10 years and as we continue to learn. I try to pass on support for new families in my role in the CTN Family Mentor Program.
6.What advice would you give to other parents of newborns who have Down syndrome? 
Your initial feelings at first might be fear and you might feel alone and that know one understands what you are going through. Remember you are not alone. With patience, your fear will soon turn to hope. There are so many Down syndrome groups and resources in Ontario and around the world.  The community of parents who are willing and delighted to share experiences and help is huge and diverse.  Just reach out when you are ready and trust the new journey and path you are on with your new son or daughter.  Your child needs you to just love them!!!

7.Why is World Down Syndrome Day important to you?
It is all about awareness and celebration.  It’s a day recognizing and bringing awareness to support inclusiveness in our community. With the recently approved Bill 182 proclaiming Down Syndrome Day in Ontario, March 21 2017, it becomes another day to take time to teach and spread awareness and celebrate how special and wonderful people with Down syndrome are.   

World Down Syndrome Day Facebook Page
Downloadable new parent guide from the Canadian Down Syndrome Society
CTN Online Resource Centre Resources

Family Stories:
My Daughter Has Down Syndrome and I Wouldn't Change a Thing
A Special Interview for World Down Syndrome Day