Children who come to the RCC face daily challenges with determination and courage. The following are a selection of those success stories that profile some remarkable children and youth. Their strength and positive outlook are a source of encouragement for others. These are children who demonstrate ability every day.
Written by Krista Brosseau
Nicholas is 9 years old, and, despite the challenges he faces every day, is an active and happy boy.
Since birth Nicholas has struggled with various health issues, which have been linked to a genetic disorder unique to him. He has a deletion & quadruplication on chromosome 11, causing his basic make-up to be out of sync resulting in a number of physical and cognitive challenges. Nicholas has been diagnosed with global developmental delay, autism, kidney disease, seizure disorder, dystonia (TH deficiency), hypotonia and is also non-verbal. Despite these issues, Nicholas is a happy-go-lucky little boy who loves music, dancing (in the arms of an adult!), riding his trike and swinging on a swing among his many favorite things.
Our family has lived in Winnipeg since 2012 and as any move can be difficult for a family, moving with Nicholas is extremely so. Unable to prepare him for this transition meant that we arrived in a new city, new home, new school, new doctors, new everything. After the initial shock of starting over, we have adapted well to our new city and have fallen in love with all things Winnipeg. As a family we like going on bike rides together (Nicholas pulled behind) or going to the park. In the summer Nicholas loves the beach - an easy destination for our family. Nicholas' laughter and easy going attitude keep everyone around him smiling.
With help from his therapists at school, Nicholas is the proud recipient of an iPad mini & modified trike from the Children's Rehabilitation Foundation. Both are incredibly important for our family. As Nicholas' is non-verbal, the communication app on his iPad helps him communicate with people around him and has made a huge difference in his life at school. As parents we are tuned in to Nicholas' non-verbal cues but with his iPad, he is able to easily communicate with his classmates & school support team. He can ask for different foods to eat or tell us that he's thirsty, he can ask for us to sing certain songs or tell us who he wants to play with. The iPad takes away the frustration that not being able to communicate like everyone else can cause.
Recently Nicholas received his very own modified trike - and he rides it everyday! Riding the trike has been a part of his physical therapy regimen at school, he cruises the hallways daily and when the weather is nice is able to ride outside. This exercise has really helped improve his leg & core strength which in turn helps with his balance. Now that he has the same trike at home, we tour the neighbourhood and visit the parks, Nicholas loves riding the bumpy sidewalks. Â Nicholas has grown too heavy for us to carry and is challenged to walk, the trike has given him the freedom to be far more mobile. He can ride in the direction he chooses, speeds up or slows down, or just meanders up and down our neighbourhood streets. While seemingly a simple pleasure - riding a bike gives Nicholas the basic opportunity of doing something that almost every child can do - and boy does he love doing it. We know we'd better wear running shoes when we are outside - to catch up!
Nicholas also takes part in a music therapy program that the CRF supports. I often wonder if Nicholas was born with a tune in his heart because he loves music so much! We enjoy taking him to the class each Saturday, helping him learn to coordinate movement & music as well as socialize with the other children.
As Nicholas learns and grows we see subtle changes in him and although we know he will never be like other children, we hope that he will always be a happy child. It's so rewarding to see him attain the basic milestones he works towards, like knowing his colours, numbers and alphabet. We want Nicholas to be challenged but at the same time do not want him to feel overwhelmed or pressured so we try to let him learn at his own pace. Nicholas has a certain "joie de vivre" that we embrace with open arms - he helps us just as much as we help him.
The Children's Rehabilitation Foundation is a gem in the Winnipeg special needs community and having lived in other cities - I know how lucky we are here to have it. Buying an iPad or bicycle might not seem like a big deal, but when you only have specialized equipment to consider, the costs can become astronomical. Having the help that the CRF provides is a huge weight off our shoulders. As more and more children and families need help - it is so important that organizations like the CRF exist. The work they do to foster relationships with big companies whose donations mean so much and the fundraisers they operate each year make such a difference to families like ours. Everything that our children need cost more and while we try to do everything we can for them, somethings are just out of reach. They say it takes a village to raise a child, this couldn't be more true when that child is especially challenged.
We learned the hard way that things don't always turn out the way you want them to. Nine years ago our baby boy was born and it has been a long road to where we are now. Not just for Nicholas but for our family. And if we've learned anything it's that we take each day as it comes. That old adage holds true "everyday is a new beginning". It's difficult not to think ahead, and wonder what will be - but those thoughts aren't helpful, they drag us down and cause us to remember all the things we thought we wanted in life. We try to keep positivity on our side, we think of how far our little boy has come and how much he has accomplished. Every person is unique and we all do things in our own way, our Nicholas has his own unique path to take and we've learned that unbeknownst to us - he's been guiding us down his path since he was born. As a parent of a child with special needs I can honestly say I have learned more from my own child about life than I have from all the education & life experiences leading up to meeting him. We can't wait to see what life lessons he will teach us next....