MADISON & JACK - Moving Forward Together
ALEJANDRA - One Step at a Time
UWAIS - Odds-Defying Self-Advocate
For so many Grandview Kids and their families there is no quick fix. They are on a thousand step journey on a road with many bumps, twists, ups and downs. Each achievement, each victory, each time they defy the odds, moves them further along life’s path. Grandview is thrilled and honoured to share the journey with these incredible kids and their families.
And we invite you along too.
MADISON & JACK
Moving Forward Together
Madison is a smart, bubbly and active three-year-old. She loves the Toronto Blue Jays and even knows some of their names. Unlike many children her age, she can watch an entire ball game. Madison also throws an elegant tea party. In our busy home, baby brother Jack is also on the move.
After facing many delays with her gross motor skills, Madison was referred to Grandview when she was 10-months-old. There, we started doing physiotherapy and occupational therapy and were connected to a Developmental Paediatrician. Soon they diagnosed her with Cerebral Palsy — Spastic Diplegia.
Grandview supports Madison with occupation and physiotherapy to help with muscle stiffness and control. She also receives periodic Botox injections to ease spasticity in her muscles. Right now she is working on walking independently.
Grandview helps us source equipment including her walker, sometimes letting us borrow equipment for free. To ease her frustration, they suggest ideas such as the basket Madison uses on her walker to carry her toys from room to room.
Grandview’s Preschool Outreach Program (POP) worked with Madison’s specialized preschool to ensure she had all the support she needed and that her therapists there were working toward the same goals. In addition to other complementary therapies, she goes horseback riding at WindReach Farm in Oshawa. She’s a very busy little girl!
Our social worker connects us with other families and helps us access different funding options, supports and programs within our own community. As Madison gets older she will play a key role in supporting Madison’s emotional health as she discovers and accepts who she is. It’s really a holistic approach
to managing her needs.
We are also involved in a provincial research project involving Grandview called CP-NET. We feel the current research and work happening around the world is filtering through places like Grandview.
In the early days we felt disjointed until we came here. Once we arrived, everything was taken care of within one place. Now that baby brother Jack is also a Grandview Kid, this is more crucial than ever.
Eight-month-old Jack was diagnosed with Congenital Torticollis, a muscle disorder in his neck which occurred inutero. His treatments at Grandview began soon after one of Madison’s therapists noticed Jack’s tilted neck. To ease the scheduling burden, Grandview arranged Jack’s appointments to coincide with
Madison’s. They understand the practical demands our family faces.
Incidentally, Madison insisted the helmet Jack wears as part of his treatment, sport the Jays logo just like the one on her pink ankle orthotics. Gratefully, we expect Jack’s neck to recover within a year.
As for Madison, she will undergo surgery in the U.S. to permanently reduce the spasticity in her lower body. Grandview will support her through the year-long recovery as she re-learns her gross motor skills all over again before reaching the ultimate goal of walking
Luckily, Madison has had the same therapists since she was 10 months old. When she achieves things it’s like she’s their own. They celebrate with us and they love it. They are just part of our family now.
One Step at a Time
Alejandra’s favourite sparkly t-shirt says it all. “Always Dream Big.” My six-year-old daughter and I do that every day, in ways most people take for granted. When you hear Alejandra talk about the roller coaster she went on this past summer, you can tell it was her greatest adventure.
Born with Spina Bifida and Hydrocephalus, Alejandra faced many surgeries. Her first operation took place the day after she was born to close the hole in her spine and the exposed nerves. The second one shortly after, drained fluid from her brain. And most recently, an operation this past August modified her bowels and bladder.
She is affected from the waist down and has some movement in her legs. However 90% of her time is spent in a wheelchair. In the past year she has been able to walk short distances with her walker. It was a great accomplishment.
Since the early days of Alejandra’s life, Grandview played a key role in her journey. Referred to Grandview at just under one year of age through SickKids, she worked with occupational therapists, physiotherapists and speech pathologists in 6-week blocks on fine motors skills, crawling and walking. When she received a stem cell treatment out of the country, her Grandview physiotherapist assessed her before and after. She was crawling within days.
She likes going to Grandview. For her, it’s fun and hard work combined. There is someone there teaching her how to do things independently. Things like buttoning her jacket or doing up her zipper. Aside from the therapeutic services, Grandview has provided support, information and guidance to funding resources. I knew that our needs were looked after.
She went to JK at Campbell Children’s School at Grandview in Oshawa. Having therapy there every day for two years, she learned how to use the walker independently. She also knows how to get around her house in her wheelchair thanks to the Wild Wheelers program. No longer confined to crawling, she can move freely and even reach the light switch to turn it off by herself. Her next goal is to climb up the stairs.
Now Alejandra is in grade one. Her favourite subject is gym. We are currently working on her stamina, endurance and upper body strength. In the big picture we are striving for Alejandra’s independence, for now in mainstream school and down the road so she can figure out challenges on her own and advocate for herself. If she needs help she can ask for it.
That’s a big one. I’m originally from Oshawa, lived in Alberta for 15 years but returned home to have Alejandra. Grandview and all the support systems for Alejandra have kept me here. Looking back to the early, uncertain days of Alejandra’s life, I would tell myself not to be so terrified. There are great support systems in place that will help.
Grandview gave me answers. When you’re a first time parent you worry about the future. It overloads your brain. When faced with a disability it’s even more so. You just go day by day. Everything will work itself out. Be strong and be brave — just like I tell her.
Our nine-year-old-son loves to make people around him laugh. Kurt adores his baby niece and treasures family time. He wants to be a bus driver when he grows up and thinks wrestler John Cena is awesome. We think Kurt is awesome. Thankfully, he knows he is too.
When we were 19 weeks pregnant with Kurt and his twin brother, Kurt was diagnosed with severe Hydrocephalus due to a stiffened, narrowed ventricle. It is an incurable condition. The doctors expected Kurt to be born in a vegetative state.
Looking at this vivacious kid now, it is amazing how far he has come. It is also evident how vital Grandview has been to Kurt and our family.
Shortly following the insertion of a shunt to drain fluid from Kurt’s brain at one month old, Kurt started coming to Grandview to receive occupational and physiotherapy. He received Botox treatments to improve his balance, learned to walk, crawl and climb stairs.
However at three years old, the shunts began to fail regularly, resulting in lethargy, vomiting, headaches and ultimately several surgeries. Things stabilized until one morning Kurt couldn’t get up from the floor where he was playing with his toy cars. His left side was completely paralyzed. A cyst was pressing on the part of his brain that controlled his motor skills.
Again, Grandview was there. Kurt needed intensive therapy to overcome his paralysis. In true Grandview style, they stepped up to the plate.
Following his surgery in Toronto we insisted Kurt return home to recover — and to Grandview for therapy. We were concerned that he would never come out of the paralysis. Yet Grandview made it happen. If it weren’t for them, he wouldn’t be where he is now.
Having Grandview here in Durham Region meant we could keep Kurt home with us during his recovery. Grandview is very supportive. They have the answers and the comforting words we need to hear.
Kurt continued physiotherapy while he attended Campbell Children’s School in SK to get ready for grade one. He was a big hit there. Grandview was also our advocate when transitioning Kurt to the mainstream school system.
Now a grade 5 student in public school in Oshawa, he suffers from a mild disability that makes it hard for him to understand instructions. Mandy, his social worker from Grandview, helps him with that.
No doubt about it though, Kurt is as bright as his personality. This is the kid who, following his own surgery, visited other children in their hospital beds
to see if they were okay.
Now he is due for an occupational and physiotherapy assessment at Grandview. We hope to continue with additional treatment.
Just the other day his teacher emailed us about Kurt’s leadership and “awesomeness” in the classroom. Words can’t describe how proud we are of him. They also can’t describe what Grandview means to us. Although if you ask Kurt about Grandview can you guess what he’ll say?
The soft-spoken, well-mannered nature of my teenage son conceals the determined advocate he has become. Diagnosed with Multiminicore Myopathy as an infant, Uwais was never supposed to crawl or walk or talk. He is now a computer whiz with dreams of driving a motorcycle.
The disorder affects every muscle, leaving his body uncooperative and weakened. His muscles will not regrow. He has difficulty lifting objects such as school books. His eyes are fixed and his lack of peripheral vision increases his chances of falling. Sometimes respiratory machines assist his lungs. Eating, dressing or getting around can be challenging.
Since Uwais was 6 months old, Grandview worked with pediatricians, neurologists and community-based groups to propel him to where he is today. He began speaking at one and through lots of occupational and physiotherapy, started walking at three. He continues to amaze his doctors.
I think back to a doctor’s visit when Uwais was little. The doctor was stunned when he walked to the examining table and climbed up by himself. I still get emotional thinking about it. Throughout his early years including his time in JK and SK at Campbell Children’s School in Oshawa, the Grandview team worked with Uwais on his fine-motor skills and so much more. Before transitioning to grade one, Grandview ensured all physical and emotional supports were ready.
From day one Grandview encouraged Uwais to push himself, to be his own advocate and use his voice. He always persevered. He taught people to see things differently. When asked at his new school why he was in a wheelchair, he would just tell them. He had no qualms.
Through Grandview’s therapeutic recreation groups such as Adventures in ParaSport, he participated in swimming, soccer and even karate. Now Grandview is suggesting horseback riding! He also enjoyed cooking, computer groups and a camping retreat. Working toward his independence, Uwais is transitioning to the Ablilities Centre in Whitby to work on weight training. He even took a local bus tour to learn skills like grocery shopping.
Now in his first year of high school, Grandview guided his transition again. He is set on achieving 80% in all subjects. Also an avid sports enthusiast, he uses his wheelchair to play goalie during hockey games. He is delighted that everyone wants him on their team!
We still see occupational and physiotherapists. As Uwais grows everything changes and we don’t know how he’ll adapt. We’re lucky to have such a fantastic place as Grandview in Durham Region. They treat you as family. Although, now we hear of families having to wait.
Whether riding a bicycle or taking another milestone walk across the stage at his grade eight graduation, Uwais will find his way. His t-shirt, quoting the late Muhammad Ali, says it all. “Impossible is Not a fact. It’s an Opinion.”