2011 Radiothon Family Stories
10 year old Sam Mercier loves watching movies. He has a great sense of humour and enjoys joking around with his family members and classmates. He takes gymnastics and enjoys practicing his hockey skills. Yet it was only a few short years ago that Sam’s parents, Guy and Linda, worried that he’d never be able to do so many things other families take for granted.
Sam’s parents became concerned as he began to miss developmental milestones as a baby and toddler. It became even more frustrating when he would achieve some of them and not others, or regress when he’d reached them. “Sam reached many verbal milestones, and made eye contact with us, but then he started losing a lot of this,” says Guy, Sam’s father. “As Sam got older and began ‘jargoning’ – repeating things like phrases from movies over and over – we began to suspect that he had autism.”
It was a difficult time for the Merciers, who sought intervention and anxiously awaited a diagnosis as they worried about the future. “It was really overwhelming,” Guy says. “We had no idea what the short, medium and long-term impacts a diagnosis would have on Sam and on the whole family.”
The diagnostic process took six months when it was finally determined that Sam has autism. “We had strong suspicions that the diagnosis would be autism, and in some ways, it was a relief for us to know what we had to deal with. It validated our concerns about Sam,” Guy says. “During those six months, we did a lot of research in preparation for an autism diagnosis, so when we got the news, we knew what the next step had to be.”
That next step was enrolling Sam in St.Amant’s Applied Behaviour Analysis (ABA) program. “We reviewed all of the options because there is a lot of misinformation on autism support. It can be confusing because there is so much information out there, but we chose ABA because there is so much evidence supporting its process,” says Guy. “ABA isn’t a ‘flavour of the month’ – it has a lot of research and science backing up its effectiveness.”
Sam began the ABA pre-school program, and soon, his parents began to notice significant improvements in his social skills. “Before ABA, Sam displayed typically autistic behaviours. He was behind in language, delayed in toilet training, didn’t respond to his name, repeated phrases, and wouldn’t play with other children. It was difficult to play a simple game with him because he couldn’t interact well socially,” says Guy.
These days, Sam has made excellent progress through the support of the ABA program. He answers to his name and engages in play with other children to a greater degree. He can perform many of the life skills that his parents once worried would never be possible. Sam’s relationships with his family members, including sisters, Sophia, 14 and Daniella, 4, are better than ever. “Sophia is a very patient, caring person who gravitates to help other kids with special needs,” says Guy. “And Sam and Daniella play together often and are very affectionate with one another.”
“ABA has made a dramatic difference in Sam’s life and to our entire family,” says Guy. “We worry about him much less. He’s still learning about the social side of having friends, but we’re confident that this will continue to improve.”
Even though the future holds a lot of uncertainty for the Merciers, they remain optimistic. “We’d eventually like to see Sam become involved in team sports, engage in more typical social activities, and live independently as an adult,” says Guy. “We’re hopeful that this will happen one day, but it is thanks to ABA that Sam has come as far as he has. Without ABA, we wouldn’t be where we are. We wouldn’t be on the road to seeing the best Sam he can be.”
To support the programs and services to continue helping children like Sam, donate today by clicking here.
Many people understand what it’s like to struggle with their weight. For individuals like Jeffrey McDonald, weight is more than a struggle. It’s a lifelong journey that requires constant management of every single mouthful, every single day.
Jeff was born with Prader-Willi Syndrome, a genetic eating disorder resulting from a missing chromosome. Jeff can’t feel when he is hungry or full, has difficulty building muscle, and his metabolism is much slower than that of a person without Prader-Willi syndrome. He requires support from a number of community agencies, including St.Amant, to help manage his compulsive eating and weight gain.
Jeff was diagnosed at birth and doctors, who gave him a low rate for survival, said that if he did survive, he would never be able to do things like ride a bike. As he grew, his syndrome began to affect Jeff physically as well emotionally. It strained his family relationships, especially with his younger sister, who didn’t understand Jeff’s behaviour and why they had to live in such a restricted environment. His parents became very concerned about his compulsive and often secret eating habits, and were forced to lock the fridge, cupboards, and garbage cans in the house. At the age of five, when Jeff began school, he slowly became aware that he was different from the other kids.
“It was tough growing up,” he said. Bullied at school from his earliest days, Jeff’s weight climbed until it peaked at 355 pounds at age 17. It was around this time that he met a social worker who suggested he attend a conference on Prader-Willi syndrome with his family. It was at that conference where his family, especially his younger sister, truly began to understand that Jeff had no control over his compulsive eating. “She understood that it wasn’t my fault,” he says.
Jeff also experienced a life-changing revelation at that conference. “I finally said enough is enough,” he said, after observing how many people with Prader-Willi syndrome led healthier lives and maintained healthy weights. “It made me realize that I didn’t need to feel guilty and that there was hope for me.” Jeff was using a wheelchair at the time, and began to exercise by taking short walks around the block until he gradually developed more endurance. His family began carefully monitoring his food portions, and he started seeking nutritional support from health professionals.
These days Jeff, who lives on his own with 24-hour support, goes to the gym three times each week, participates in three Special Olympics sports, and walks as much as he can. He also rides a bike, something he was told would never be possible. He has a great sense of humour and is proud to have lost over 200 pounds in the last ten years. “Support is the most important part of keeping me on track,” he said. “I couldn’t maintain my health without this support.”
Jeff is a client of St.Amant’s Community Support Program and works with a registered dietician at St.Amant who provides him with healthy diet plans and keeps him on track to meet his health goals. She creates meals for Jeff to provide the maximum amount of food for minimum calories while still allowing for an occasional treat, like his Sunday dinner. “She helped me realize that if I have the support to stay on my plan, I have more opportunity to experience new things, like eating in restaurants,” he said.
“I want to be healthy, live a healthy life, and continue what I enjoy doing,” Jeff said. “I want people with Prader-Willi syndrome to understand that there are resources, mentors and other types of support that can help them."
Before: Jeff at his heaviest Today: A healthier Jeff hams it up for the camera
To support the programs and services to continue helping clients like Jeff, donate today by clicking here.
Veness Family Story
Phil Veness is the father of 5 daughters. Five daughters would be challenging for any parent, let alone adding in the complexity of two of those children being diagnosed as severely autistic early in life.
“Ainsley is our second born, and right from the start we knew that there was something going on with her,” said Phil, Ainsley’s dad. “She wasn’t affectionate, she had very difficult tantrums and as she got older her language was very awkward.”
To say that life was difficult is an understatement. In the 1970’s when Ainsley was a child she was initially diagnosed with behaviour problems only later to be accurately diagnosed with Autism. Ainsley’s IQ was over 70, meaning that she wasn’t diagnosed with an intellectual disability and therefore didn’t qualify for services. It wasn’t until Ainsley was 12 years old, and after Phil and his wife spent significant time lobbying, that they were able to access services for their daughter.
Seven years later, and 2 more children later, Phil’s 5th daughter Amber was born. For the first 3 years of Amber’s life she showed no signs of disability.
“Amber was happy, beautiful; she was always well-behaved,” said Phil. “Then things began to deteriorate. She lost her language skills; developed self-stimulation behaviour (repeated hitting of self etc.). Just like that she changed from normal to severely autistic.”
Unlike Ainsley, whose behaviours started out rather extreme but slowed as she got older, Amber has never stopped having behaviour problems. She can be self-abusive and aggressive. This made the home environment with her sisters especially challenging.
Again, the Veness family found it difficult to access services. After much lobbying they received respite services and by age 13 accessed the St.Amant Community Support Program.
“Through that program we got respite and counseling. They took the time to work with us as a family, including my daughters – no one else ever did that. It is a great program and helped us a lot,” said Phil.
When Amber was 15, the behaviours were too difficult to manage within their home and they placed Amber in a community home.
“It was the worst day of our life,” said Phil.
When Ainsley turned 18, it was again a struggle to access services. The Veness family knew that Ainsley wouldn’t be able to live independently or gain employment. However, because of her high I.Q. it took some lobbying to get a residential placement. Ainsley moved around in a few different living arrangements until she came to live in what is now a St.Amant Community Home.
“We were very lucky to find St.Amant,” said Phil. “They are kind, they set realistic goals, the staff are patient and they have a personal connection to each client.”
Amber also now lives in a St.Amant Community Home and Phil says that her experience has been equally positive.
“I remember one meeting when a staff person referred to Amber as “My Amber”. She was so apologetic and embarrassed that she had referred to our daughter as “hers”. And I responded – no, I could cry. It makes me so happy that you care that much about her,” said Phil.
“They care about my daughters’ dreams, they are realistic with them. One of Ainsley’s dreams was to visit all the places she used to live, so for the past year the staff have planned car trips with her to Flin Flon and other places so she can see the homes she grew up in,” said Phil. “I am so lucky with St.Amant.”
To support the programs and services to continue helping clients like Ainsley and Amber, donate today by clicking here.
Michelle and Jayson Cyncora see a much different future for their 3rd born son Easton today than they did a year ago.
A year ago, at three and half years old, Easton wasn’t talking, wasn’t using the toilet and tantrums were the norm. Michelle and Jayson knew early in Easton’s life that something was different about his development.
Some thought it was third child syndrome, as Easton is the Cyncora’s third born son. Doctors suggested it may be an issue with his hearing and referred him to a speech pathologist. In their guts, Michelle and Jayson knew it was something more.
“We started doing a lot of internet research and when the diagnosis finally came just before Easton’s 3rd birthday, we weren’t surprised,” said Jayson.
In fact, the Cyncora’s had already processed the diagnosis of autism and were intent on getting early intervention.
“You always hear, early intervention is your best hope,” said Michelle. “It’s confusing, the options that are presented, and there’s a lot of pressure to make the right decision for your child and for your family. The whole process right after diagnosis was difficult. There are a lot of options and information to sort through. We felt a lot of pressure.”
Soon after, Michelle and Jayson attended an information session. “We walked out of there and I said to Michelle, ‘well, the decision is clear’.” said Jayson.
“And I thought, it is?” laughed Michelle. “What do you think we should do? It wasn’t quite as clear to me.”
“Based on what I heard at that presentation, I knew that we needed to get Easton into the St.Amant ABA program,” said Jayson.
“After thinking about it, I agreed.” said Michelle. “We have a very good family friend who is a principal in a school and she also highly recommended the ABA program.
They put Easton’s name on the waiting list and continued attending their other program. Not too long after they got the call that the St.Amant ABA program had room for Easton.
“When we started with St.Amant Easton was very frustrated with his lack of ability to communicate through speech and would throw many tantrums a day,” said Michelle. “Easton has always been an affectionate child, but it was hard to go places with him. He wouldn’t sit still, wouldn’t cooperate easily and would tantrum to try to get his message across.”
Through the ABA program, the Cyncora’s have had tutors working with Easton 5 days a week. They come to the family home and use teaching methods based on established learning principles that have worked very effectively for Easton.
Today, Easton is sitting in a chair in the living room concentrating on his task at hand. He smiles and says hi.
“He says many words now,” says Michelle. “When we ask him to do something, he understands and can do things independently. He’s able to communicate, he “pounds it” and high fives with his dad and brothers. He has way fewer tantrums, which makes life so much less stressful!”
Easton started pre-school this fall, something his parents didn’t think he would be able to do.
“The tutors spent the summer preparing him by practicing a pre-school routine, having playdates with other children and practicing how to share,” said Michelle. “He’s doing really well.”
The Cyncora’s would recommend the St.Amant ABA program to everyone and have noticed a huge difference in their son and in their family dynamic over the past year.
“The ABA program is 200% different than what I had ever heard. I would recommend the program to everyone,” said Michelle.
Michelle says that before Easton joined the St.Amant ABA program, her hope for him was just that he would one day be able to communicate.
Just one year later, Michelle says she is so beyond that and that she sees now that Easton is capable of so much more.
“His future looks brighter,” said Michelle. “I know that he will be speaking like anyone else. ABA has opened up so many more doors.”
To support the programs and services to continue helping children like Easton, donate today by clicking here.
Amanda is a bright and funny young woman. She is the first of three children that likes to play jokes on her mom, her two younger brothers and her caregivers.
Amanda was born a normal, healthy child and was developing like any other child. At six months Amanda had her first seizure. By the time she was one, her seizures were averaging 30 to 45 minutes and were uncontrollable. When Amanda was about three years old she caught a cold and aspirated mucus while experiencing a seizure while napping. The result was damage to her fragile young brain. With every seizure that rocked her small body, more damage would occur to her brain. This contributed to the loss of ability, both in her speech and mobility. By grade two, she was using a wheelchair and her speech consisted of one syllable words.
Cathy Chehowy, Amanda’s mom, was told by one of Amanda’s Neurologists in 2002 that Amanda is at high risk for ‘Sudden Unexplained Death of Epileptic Persons’ or SUDEP. With this knowledge, Cathy and Amanda’s brothers know that “every day is a good day.”
Amanda’s stubborn spirit can come in handy at times. In 2004, she experienced a seizure that lasted 8 hours. She was given so many drugs in order to stop the seizures that she was in a coma like state for a week. Cathy remembers the medical professionals preparing her for the worst. When Amanda came home she had a tube through her nose to her stomach for feeding. She could barely hold her head up. By the next day Amanda had pulled out the tube and began to eat again. Within 2 weeks, Amanda was back to her regular self, much to the surprise of everyone.
At 19, Amanda lives at home with her mom and her two younger brothers Alex, 18 and Ben, 16. Cathy works full time and as single mom, juggles all the needs of her children, including all of Amanda’s personal care.
Amanda and her family are supported by St.Amant through respite services and Amanda attends St.Amant School.
“We use respite one week per month, and that’s our break week, where we are able to go out in the evenings and spend some time together without the focus being completely on Amanda. The boys and I need that time to catch our breath and catch up with each other,” said Cathy.
Amanda attended public schools until grade 7. At this point the school division was no longer able to accommodate Amanda’s medical needs. They recommended the St.Amant School.
“Mandy loves to be around people, she’s stubborn and playful. Although she can’t speak, she is very good at communicating – one look will tell you everything,” said Cathy.
Cathy says that Amanda enjoys St.Amant School because she is social by nature and the teachers and educational assistants are very good at communicating with non-verbal people. The teachers also know how to work around her stubbornness, which is no simple task.
“The teachers at St.Amant School know each child individually and they program their education plan to her specific needs,” said Cathy. “St.Amant also does things that you don’t get at other schools like: music therapy, swimming and outdoor activities.”
Throughout her elementary year at public schools, Amanda taught a lot of other kids’ lessons about how normal and able people with disabilities are. She made many good friends and had great experiences. As she got older though, her activities were more individual and she was apart from the group for most activities.
“She’s no longer the square peg trying to fit into the round hole,” said Cathy, “she’s part of the group, she’s made friends. St.Amant sees the child, they don’t see the disability. We’re very grateful, and Mandy loves school.”
“St.Amant has helped not only Amanda but, has helped our family immensely. Not just with the fact that they are able to give our family a break, however they reassure our family with the peace of mind that our girl is in good hands when we are not there to help and care for her. There is the constant worry that something may happen to Amanda but, knowing she is at St.Amant helps settle the mind and make the day go by easier.”
To support the programs and services to continue helping clients like Amanda, donate today by clicking here.
Who knew that a common cold virus during pregnancy could cause developmental disabilities in a developing child?
This rare occurrence is what led to the beautiful and special first born daughter of Susan and Rob Meyer. Stephanie is now 19 years old. She is calm and happy. She loves to help her mom in the kitchen and watch her dad mow the lawn and wash the car. Her younger sister Brooke spends as much time with her sister as a busy 16 year-old competitive swimmer can.
Soon after Stephanie was born, Susan and Rob thought they had a colicky baby. “Stephanie was a fussy baby, hard to settle and rarely slept more than a few hours at a time,” said Susan. As she grew, they noticed that she wasn’t hitting the normal milestones. They were constantly assured by their pediatrician that Stephanie was just colicky, but their parental instincts were telling them that there was more going on with their daughter.
After many tests, it was determined that Stephanie had brain damage resulting in Cerebral Palsy and a developmental disability that, in this case, was caused by a common cold virus that most of us get before our childbearing years. Susan got sick with the cold virus while pregnant and it affected her developing child.
“At the urging of our family, we checked out St.Amant when Stephanie was a baby. All I could see was big equipment. We were in tears when we left, Stephanie was just a baby. We vowed that we would keep Stephanie at home,” said Susan.
Stephanie needed 24 hour care, and never outgrew her sleeping habits. For 15 years, Susan and Rob prepared special food, managed all of her personal care, arranged for special daycare and schooling, medical and therapy appointments and also specialized surgeries on Stephanie’s hips – all on very little sleep.
“For a time, Rob worked midnights, because Stephanie could only go to the sitter for a few hours at a time. We became single parents. One of us was with Stephanie and one was with Brooke and the only time we spent any time together was in the middle of the night in Steph’s room because she would fall back asleep to the sound of our voices talking,” said Susan.
After Stephanie’s second surgery, their doctor urged them to seek respite services from St.Amant. Stephanie was in casts and her care needs increased significantly. Although those few initial respite weekends were extremely difficult, the family grew to rely on that time to catch up on sleep and chores and to spend some time with Brooke, participating in activities that had been limited to them.
Over the years that Stephanie attended St.Amant for respite services, Susan and Rob noticed more than just the large equipment.
“What we began to notice about St.Amant was the exceptional service, care and programming that the facility and its staff offered, and how happy Stephanie was when she was there,” said Susan.
As we became more comfortable with Stephanie spending time at St.Amant, and seeing the benefits and her attitude toward being there, it opened up the conversation of having Stephanie live there one day. Stephanie was getting older and bigger. Her personal care could no longer be managed by one person and the separation of Susan and Rob was starting to wear thin.
“I was starting to feel trapped,” said Susan. “You know, I could no longer just run to the store to pick up a few groceries. I couldn’t take Steph to do those things without it being planned and having Rob there to help me. And as Brooke was getting older, Rob was busy driving her to sports and activities and was available less to help me with Stephanie. We had talked about never wanting to feel resentful, or allowing Stephanie’s care to inhibit Brooke’s ability to participate in activities.”
When Stephanie transitioned into high school, she moved to a school that was further away. She was spending over 2 hours on the bus each day and clearly wasn’t happy with the commute or the new environment. Emotionally and physically, Rob and Susan were burnt out. Susan knew the best place for Stephanie to attend school was at St.Amant. When Stephanie was fifteen Rob and Susan made the most difficult decision they’ve ever had to make.
“First and foremost we knew it was the right fit for Stephanie and then for us as a family. I often refer to St.Amant as the "total package" It has everything that the clients and their families need under one roof. From schooling to recreation to dentistry to hair services and the list goes on,” said Susan. “But what makes St.Amant so special is definitely the people who work there. Working with the clientele at St.Amant is not for everybody and I truly believe that the people working at St.Amant genuinely want to be there. Having the desire and skills to work with some of our most vulnerable and fragile population is a real gift that I believe the staff at St.Amant truly understand and appreciate.”
To support the programs and services to continue helping families like the Meyers, donate today by clicking here.
Vicki is one of those people you can’t help but like. She’s friendly, happy, open and honest. Those are some amazing characteristics especially considering she hasn’t had the most typical or easy life.
Vicki was born to a loving mom and a violent and abusive father. Her early years were scary and tumultuous. At the age of 7 she was placed with a foster family and then adopted. After a few years, she was placed again with a foster family and moved around a bit until she arrived at a St.Amant community home at the age of 13.
After many challenging years and experiences, including losing a person she loved dearly to cancer and other heartbreaks a young girl should not have to suffer, Vicki’s bright spirit was almost extinguished. She was losing hope and faith in herself and those around her, and questioning her will to live.
Although living with 5 other young women in the community home wasn’t always easy, it may have saved her life.
“If it wasn’t for the people at that home, I don’t know if I would be here,” said Vicki. “The staff really cared, they wanted to help us, they encouraged us and wanted us to reach our goals.”
Vicki lived in a youth community home until she reached adulthood, then moved into an adult community home for a few years while she honed her independence skills. After taking an independent living test, Vicki reached one of her first goals – to live in her own apartment.
Vicki still receives support from St.Amant and is working on how to reach her new goal of becoming a professional chef and a D.J. “The staff is really encouraging and wants to help me reach my goals,” said Vicki. “St.Amant has helped me learn and grow.”
Vicki is also keeping her heart open to another one of her dreams, “I would like to get married one day and have a respectful long-term relationship.”
To support the programs and services to continue helping clients like Vicki, donate today by clicking here.
Today Clarence has been to school and on an adapted bike ride; an extraordinary feat for the tiny seven-year-old considering that until coming to live at St.Amant last summer, Clarence had never left the hospital.
Given an emergency tracheotomy at birth, Clarence was fragile since his first labored breath. He spent most of his childhood in bed; surrounded by tubes and wires. Even basic human contact was difficult. Clarence was diagnosed with a rare neurological disorder called Mobius Syndrome, his mother Andrea watched helpless from his bedside, her son dependant on a breathing machine.
Clarence was eventually removed from the ventilator, and although that gave him greater mobility, he remained under close supervision of nurses and respiratory therapists and was still mostly limited to his room at the Children’s Hospital. Clarence didn’t know it at the time, but his world was about to get a lot bigger.
This was thanks to a decision by St.Amant in conjunction with the WRHA to open a small section of a living unit at River Road Place to children with complex respiratory care needs. Clarence was one of the first to be selected as a good candidate for the move and ever since then he has been astonishing family and staff with the amazing potential he has in spite of his condition.
“We were told that he often appears not to like stimulation, he doesn’t interact much and that the speech valve frustrated and startled him,” said Elsa Hodge, a St.Amant Nurse who works closely with Clarence. “It turns out though that this is changing. The longer he’s here, the more personality he’s showing,” and his mother Andrea agrees.
“When I come to visit, he’s never in his room!” she said. “Once when I came to visit he was listening to someone play music on his living unit. He was actually having fun…and it made me so happy to see him enjoying himself so much!”
Since coming to live at River Road Place Clarence attends school daily and has enjoyed several outings: Shrek at the movie theatre, the Christmas party, he’s even gone out to buy his own shoes and attended a Goldeye’s game this summer.
At River Road Place, the goal is to create a non-restrictive and comfortable living environment to support each individual to achieve optimal development and personal fulfillment.
“It makes me happy,” said Andrea, “you can see in his eyes that he’s happier here. They are able to provide a different kind of care.” Clarence is now very stable; so stable in fact he’ll be moving from the Complex Respiratory Care unit to a regular room in the children’s wing.
“I sleep better at night knowing that he’s here,” said Andrea, “his quality of life has definitely improved.”
To support the programs and services to continue helping children like Clarence, donate today by clicking here.