Seventeen years ago Matthew was born. He was a beautiful baby boy with sparkling blue eyes, a loveable round face and a little something extra… an additional bit of chromosomal material on his twenty-first pair. Matthew was born with Down syndrome.
For many parents of children with a special need, discovering that their child is not “typical” can be a difficult time. Many questions push their way forward about how their child will manage physically, intellectually, educationally, socially. Parents quickly find themselves wondering if their child will eat independently, walk, talk, read, write…the list goes on and on. We were no different. No shortage of worry was spent, no shortage of tears were shed, wondering about what life would hold for our baby boy.
However, we were lucky. In our situation we were fortunate enough to quickly be connected to the Down Syndrome Association of Peterborough. It would not be possible to share all the benefits our son and our family have gained as a result of the DSP without authoring a book, but I would like to share some highlights.
First, when Matthew was an infant we became connected to DSP’s child / parent group, Wee Ups and Downs. This was such an important part of those early days. To spend the time with other parents, to see other children with Down syndrome, to realize that they were happy and we were doing just fine, well no words are adequate to describe what peace of mind that brings to a new parent.
As Matthew grew he began to show signs of something being seriously amiss. He was suddenly trying to eat the inedible (paper, wood, chalk, for example) and we were at a loss. Visits with local specialist, doctors and therapists provided no solutions to the worsening problem. It was our connection to the DSP that finally set us on course as we secured a visit with (at the time) Ontario’s only Down Syndrome Clinic. Finally we had the answers we were looking for, Matthew was suffering with severe iron deficiency. After almost two years of struggle, the DSP was able to guide us to where we needed to be.
As Matthew approached school age, I began looking at him not as his mother, but as a teacher would. Was our little boy ready for school? Did he have the necessary skills to simply conduct himself appropriately in a classroom, never mind manage the material? Again, the DSP helped with their School Readiness Program. Every other week Matthew had one to one sessions with a Special Education professional who helped him to get his behaviour in order, provided him with a knowledge framework to build on, and gave me the insight needed to support Matthew’s beginnings in school.
As time has gone on, the DSP. has been a part of our family’s life in countless other ways such as summer school. Each August Matthew, and the friends he has known since infancy through their connections with the DSP., enjoy the benefits of a custom tailored educational program, which combines academics, speech therapy, social development, life skills and plenty of fun. As a parent, it is so encouraging to watch as your child is enriched in all these areas, while thriving with a sense of joy.
As Matthew grew older, gaps between him and his “typical” friends widened. Physically Matty’s lack of strength, endurance and coordination meant he struggled to keep up with his friends in sports. Socially he did not always quite fit in either. At the age of 12, Matthew’s love of the Wiggles and the Muppets wasn’t a commonality he shared with his classmates. Once again Matthew’s connection to the DSP provided him with the close friendships he so needed.
This has continued on into Matthew’s teen years. DSP programs like breakdancing, cooking class, community outings and social gatherings give Matthew and his friends the connections, activities and the location to share in the social time many typical children and their families take for granted.
Those valuable ties to friends who “just get it” are not limited to just Matthew, however. We, his family, all benefit from the connections we have gained through the DSP. Our lives have also been made better through educational conferences, sibling workshops, and social gatherings, just to name a few.
In taking the time to look at all the ways our lives have been made better by the Down Syndrome Association, it is hard to believe that this little organization manages to accomplish all it does, strictly through its own fundraising efforts. No outside agencies or government ministry funds the DSP in its important work. It is strictly the hard work of our Association and the goodness of our community that keeps the Down Syndrome Association of Peterborough alive. That is both amazing and scary to contemplate.
Matthew is seventeen now. We look forward to the many years and ways which we will continue to find support through the Down Syndrome Association of Peterborough, since the need for their help will only grow as Matthew does.