Easter Seals Manitoba
VISION
INCLUSION
PARTICIPATION
(VIP)
Spring 2006
Everybody Knows Somebody with a Disability – Easter Seals is There
Published by the Society for Manitobans with Disabilities Foundation.
Just Like Family
Providing Support & Services for Manitoba’s Youth
Justin, a shy 14-year-old, and his mother, Cheryl, invited me to their apartment to talk about their experiences with Easter Seals Manitoba and the Society for Manitobans with Disabilities (SMD) family.
Cheryl began by explaining how, through funding provided by Easter Seals Manitoba, SMD has been a tremendous source of help and support for both she and Justin. Justin was born six weeks prematurely, and as a result of the use of forceps in the delivery room he developed a mild form of Cerebral Palsy -a disorder that affects muscle control.
As Justin got older, Cheryl used the services and support that SMD has to offer for Justin.
“Justin needs to stay active,” says Cheryl, explaining that problems with his muscles can occur if he doesn’t.
Keeping active doesn’t sound hard to do, but Cheryl notes that it’s not always easy. As a single parent who works at Dakota Collegiate as an educational assistant, Cheryl says it’s hard to find the time to ensure Justin gets the physical activity he needs every week.
That’s where SMD has helped overcome many of the barriers they face. Recently, Cheryl discovered she was no longer eligible to receive weekly respite, where someone would come in and engage Justin to give Cheryl some time for herself and to keep Justin active. But, she says, the staff at SMD was there to help.
“I’m very thankful for SMD,” she says. “I probably would not be able to cope with how to do things, especially the services – I wouldn’t know a lot about the services available.”
Cheryl is especially thankful to Barry Russell, their Service Coordinator with SMD’s Children’s Services. Working with Bill Muloin, the supervisor of SMD Child Recreation and Leisure, Barry was able to find Justin an “access buddy”, Michael.
Once a week, Justin and Michael follow a workout program set up by Justin’s physiotherapist. And, the two of them have been involved in a variety of activities like playing handball at the University of Manitoba, and attending the YMCA.
“We love having Michael,” says Cheryl. “He is very helpful and he’s very good with Justin.”
And the feeling is mutual. Says Michael, “I talked to Bill Muloin and asked him if there would be any job opportunities with SMD, and that’s when he hooked me up with Justin. I really like Justin.”
Barry continues to play an important roll for Justin and Cheryl and he will continue to be a part of the case management and counseling program for them until Justin leaves school, or turns 21.
SMD’s Children Service coordinators, like Barry, work with parents to meet the needs of children and families in a variety of ways:
• by providing information about their children’s specific disability;
• by helping families define their needs;
• by facilitating access to resources and supports such as respite services, equipment and supplies;
• by advocating on behalf of families and their children; and
• by building family capacity for coping with the specialized needs of children with disabilities.
Our Service coordinators also participate in, and organize, meetings with parents, families, and community members to achieve smooth transitions at key points in children’s lives, such as entering kindergarden, progressing to junior high, graduating high school or moving out of school and into the community.
“SMD has made such a difference in our lives,” says Cheryl. “Thank you so much!”
With your donations to Easter Seals Manitoba, children and adults with disabilities can access numerous services and programs tailored to meet their specific needs. As the recipient of Easter Seals Manitoba funds, the Society for Manitobans with Disabilities proves to be an invaluable resource to people like Justin, and their families.
A New Home and New Friends for the Gonzalez Family
“She doesn’t speak but she understands when you give her affection – kisses and hugs,” says Doris Gonzalez about her 16-year-old daughter Carolina, pronounced Ca-ro-leena.
Carolina who will soon be seventeen years old, has a severe form of Cerebral Palsy, and requires the use of a wheelchair. She offers up a big smile as her mom bends over to kiss her on the cheek.
Doris Gonzalez, along with her husband Benjamin and daughter Carolina, emigrated to Winnipeg from their native Columbia, two-and-a-half years ago. When asked if there was a specific reason they chose to come to Winnipeg, Doris says it wasn’t a choice, it was a necessity.
In their hometown of Bogotá, Doris and Benjamin hired a young woman to help care for Carolina. Unbeknownst to the Gonzalez family, the caregiver was part of a violent
Columbian guerilla group. The woman wormed her way into the family’s home and hearts and betrayed their trustin the worst way imaginable.
After calling a bogus meeting with Doris at a local restaurant, Carolina’s caregiver drugged Doris’ drink. She was kidnapped and held captive for five months. Doris’ husband Benjamin sold everything they owned to comply with the ransom demands. Fortunately, Doris escaped her captors and found her way back home.
With next to nothing in the way of money, possessions, knowledge of the English language, and caring for a teenager who is severely disabled, Doris, Benjamin and Carolina fled Columbia to gratefully set foot on Canadian soil – in Winnipeg.
“When we came to Winnipeg, we didn’t know anybody here. We used the Internet and found someone who told us about SMD,” says Doris. “SMD was the first place we went. The first Canadian person that we knew was Barry Russell,” smiles Doris.
Barry Russell is the family’s service coordicoordinator provided by the Society for Manitobans with Disabilities (SMD). She says they can count on Barry whenever
they need answers to their questions about services, resources and to assist them in getting the special things they need.
For the last two-and-a-half years, Doris and Benjamin have studied English at Red River. She’s also found time to volunteer and work part-time at Holt Renfrew. Doris’ busy schedule only allows her to pick up Carolina from school two days a week. On the days Doris isn’t available, she goes to her ‘godsend’ Barry who, in his role as SMD service coordinator, was able to arrange for the support needed to care for Carolina.
Through the generosity of Manitobans, Easter Seals Manitoba is able to provide funding for a variety of services and programs that ensure help is given to families like the Gonzalez’.
“With Carolina, it’s not easy,” explains Doris.
Despite Carolina’s diminutive stature, it’s difficult for Doris – who doesn’t outweigh her daughter by much – to maneuver and lift Carolina without a great deal of effort. Everyday tasks such as showering and dressing are complicated and once again, Doris was able to rely on Barry’s help. He was involved in helping them find a suitable wheelchair through SMD Wheelchair Services. He also acted as a resource in organizing financial assistance for the Gonzalez’, allowing them to outfit their bathroom with a special ceiling lifting device and other necessary modifications; having a wheelchair ramp built at their southside home; and obtaining a wheelchair lift for their van.
With all the support from Barry and SMD, Doris says she, Carolina and husband Benjamin, are truly blessed. With your generous contributions to Easter Seals Manitoba,
Carolina and her family are able to receive the help they need.
A Helping Hand From SMD for Mother & Son
Ian’s mom Kim reminds him that a photographer is coming to take his picture and they should do something with his hair. Of course, like most kids his age, Ian doesn’t want his mom messing with his hair.
“Ouch, stop it,” complains Ian as Kim gels his hair into a spiked style. But Ian’s complaint of a moment ago is forgotten as he smiles at the thought of his picture being taken.
Kim explains that Ian, who has Cerebral Palsy, loves the camera, and having his photo taken is old hat to him. At just three years old, back in 1997, Ian was the Easter Seals Manitoba poster child, and since then, he’s done his fair share of modeling.
That same year, Ian was apart of the Society for Manitobans with Disabilities’ Adaptive Skills pre-school program. Included as part of the program was an occupational therapist, physiotherapist, teacher and speech therapist. Ian was one of about twelve children who participated.
“That, for me, was the most awesome program,” Kim says. As a stay-at-home mom, Kim appreciated the fact that an needed to be in a pre-school program where he interacted with other kids.
“There was concentrated focus on the kids. They did everything within that program,” says Kim.
But as times changed, the needs of the kids and their families changed – so did the way SMD’s services were provided. As a result, therapists no longer operated therapeutic services from the SMD building. Instead, the service providers went out in the field, providing the service to clients’ in their homes.
Kim says she was nervous when she heard they were changing the way the services were provided.
“Once the Adaptive Skills program ended, I wondered… what am I going to do with Ian now?” Because of Ian’s special needs, Kim knew that she couldn’t just send him to a nursery school. “He wouldn’t have had the help he needed there,” she says.
In the end, Kim’s fears were unfounded. “If it weren’t for SMD and our councilor, I wouldn’t have gotten through that whole process as unscathed as I did. They were an awesome resource for me.”
Through the efforts of SMD Foundation and their various Easter Seals fundraising campaigns, and the generosity of donors throughout the year, Kim has access to the resources which have been a blessing for her and Ian.
Last year, Ian, now an amicable thirteen year old, was able to attend camp for a week and really enjoyed himself. Ian cannot go to camp without a full-time attendant to accompany him.
Says Kim, “He had a good time. I think it’s a well-organized week. If I had to pay for that on my own – I couldn’t
do it.”
Ian was fortunate that he was able to attend last year’s camp at the same time as his friend Kyle, who goes to the same school as Ian. Kim is hoping that they will be able to repeat the experience for her son again this year.
When asked what he does at camp, Ian replies, smiling from ear to ear, “We went swimming, two times in the day.”
We can only hope that Ian is given that chance again this summer.
Michael’s Story: Moving Forward and Staying Positive
Most parents would be very proud to have a son like Michael Hildahl. He’s bright, personable, polite, and has big aspirations for his future.
Michael focuses on his strengths, on his abilities. He does not focus on the things that he can’t control. He does not focus on his disability.
“I was born with a severe to profound hearing loss,” explains Michael. At three years of age he got his first set of hearing aids and became part of the Society for Manitobans with Disabilities (SMD) family in the preschool program. With a very limited vocabulary of about 50 words, he says the preschool really helped him to progress.
Today, Michael continues his long history with Easter Seals and SMD, working part-time with the Children Services, Recreation and Leisure program while attending university full time. The eighteen-year-old is in his first year at the University of Manitoba and would like to move on to the Asper School of Business to study marketing.
“I like to be creative and innovative and I think marketing requires that,” says Michael.
It seems that, as part of the Easter Seals, SMD family, Michael may have unwittingly gone into the direction of marketing all his life.
“When I was growing up I spoke publicly for SMD at several workshops. I was asked to do it and I said, hey…sure. I figured it was the least I could do. Anything that can spread awareness is a good thing, a positive thing,” he says.
Although he is upbeat and positive, Michael says he knows that it may not be that way for others who are hard-of-hearing. Michael recently heard a statistic that really bothered him. The statistic showed that Deaf and hard-of-hearing people struggle in school, and a very high percentage -about 90% -do not pursue any post-secondary schooling.
“That really bugs me. I think that can be changed and that’s why it bothers me so much.”
Michael adds that with a little help and understanding, things don’t need to be this way and he knows that from personal experience.
Michael’s enthusiasm for furthering his education extends to his job as well. Last summer, Michael worked for SMD for eight weeks. Each week, Michael was paired with a different child, and together they’d participate in activities, ranging from day camps, museum visits, to physical activities.
“I got to meet some very interesting kids.”
Michael also has many special memories that he took away with him at summer’s end.
“Each one had something special about them,” he says about the kids. “There was this one boy who was the happiest kid in the world. He had the most contagious laugh and he was always laughing. I had a ball with him.”
If you ask Michael what his wish is for other hard-of hearing or Deaf people, he tells you without hesitation: “Don’t let it affect you. Let the world roll by and roll along with it.”