Support, Inclusion, Acceptance:
Two Great Programs for Families with Kids who have Special Needs
by Maria Redpath
The news that your child has special needs can be devastating. You are not sure what this means for your family and what to do next. In 2000, the Peterson family experienced just this. Only a few months after their second son, Raiden, was born they learned their four-year-old son, Ryder, had autism.
For Kim Peterson that moment is still vivid. “The very first thing I remember about receiving my son’s diagnosis of autism was utter shock and disbelief. I sat in the small office of the psychologist with a social worker, completely blindsided. All the words spoken after the psychologist said “autism” just blended together and sounded like nothing, because the only thing I heard was “autism.” The first few weeks after my son’s diagnosis were almost a complete haze. I remember just watching him and wondering about his future, and our future. I had no friends that had a child with autism, or anyone in our families that had autism. I just knew I had to talk.”
Walking in My Shoes (WIMS) is a group for parents and guardians
Luckily for Kim she found Walking in My Shoes (WIMS). WIMS is a group for parents and guardians of children with disabilities, including developmental delays. There are meetings once a month in both the east and west ends of Ottawa. WIMS was the brainchild of Janet Robinson who, for over 30 years, worked in the developmental services field with young children who had special needs. She frequently saw the isolation many parents experienced, and heard their frustration about the lack of support and understanding of what it was like to parent a children with special needs. Her vision was to create a networking opportunity: a group of parents helping parents and learning from each other.
“I remember attending my first meeting of WIMS,” Kim says. “It was a rainy night and I was unsure what to expect. What I didn’t expect was to find complete comfort and understanding for two hours. Every worry I had was normal! Everyone in that room had a child with a disability. Everyone had a story. Everyone had compassion. WIMS is a safe place for any parent of a child with a disability to talk, listen, vent, you name it. No one judges you. Everyone understands you. It is a safe haven.”
That was four years ago. Kim still attends the east-end meeting every month. She has developed strong friendships with the other parents; they meet outside of the monthly meetings to share information, support and advice.
Another unexpected benefit is that Ryder has started to advocate for himself. He does this at school by asking for the help he needs and as one of the participants at the annual Autism on the Hill event. Kim believes he has learned to do this by observing his mother advocate for him, something she was empowered to do through her association with WIMS. Kim and her husband were also encouraged to be completely open with their children about autism. They were given advice about how to talk to Ryder and his brother about autism and what makes Ryder unique. It’s paying off; Ryder himself talks of his therapy appointments as opportunities to “strengthen his super powers” and his younger brother yearns to be included in what he sees as fun sessions.
Joanne Small Greenall is another parent who has found WIMS helpful. When her twins, Jackson and Stella, were four months old she was barely coping with the news that one of them, Jackson, had multiple challenges. She was very sad and isolated, especially as her husband had just returned to work. She started to attend WIMS every month and was able to share worries with the other parents. Joanne says the other parents understood that this was not what she expected as a new mom; they knew what she was going through and had experienced similar emotions and concerns themselves.
Three years later Ferne was born and Joanne and her husband were shocked to discover Ferne had the same issues as her brother. They had thought Jackson’s condition was a one-off event. Despite the shock, the family was better prepared to deal with the hand they were dealt because of the supports they had in place through WIMS. Joanne is now paying it forward as she supports other families dealing with a diagnosis of a child with special needs.
The Children’s Sibling Group meets once a month
Stella, Jackson’s twin sister, attends the Children’s Sibling Group run through Citizen Advocacy Ottawa. This group was launched as an offshoot of the Parent and Sibling Day hosted by WIMS; since the day received such positive feedback, it was decided similar opportunities needed to be available on a regular basis for children who are siblings to special needs kids.
The goals of the Children’s Sibling Group are simple: provide a fun, safe, meaningful place; impart information; give mutual support and share strategies. The group, now sponsored by TELUS, meets once a month on Saturday mornings from September to May.
It’s a welcome resource for families with a special needs kid. Parent Shana Reside sums up the feelings of many of the parents of the children who attend: “This group means a great deal to my son and therefore to my husband and I. We looked for years for a group that would allow our son to see that he wasn’t alone, that there were other people who understood and could relate to the feelings, the frustrations and the challenges that come with being the sibling of someone with special needs.”
Her son Jordan is 13 and he says, “It has helped me feel not as alone and to know that it is okay to say that I am frustrated with some of the issues I have to deal with.”
What Joanne Greenall loves about the Children’s Sibling Group is it focuses on Stella first and what is great about her. The fact that she has two siblings with special needs is secondary. Stella has made friends with the other children; they understand her unique life experience as they have similar ones. “It has normalized things for Stella,” Joanne explains. “It is a venue to vent about her brother and sister, a place where this is okay, where she doesn’t have to feel guilty about her feelings.”
Joanne shares some anecdotes that illustrate the benefits for her family. “A few months into the program I overheard Stella telling her brother to stop screaming because it was bothering her. This was something I hadn’t seen before. We worried about Stella. Stella’s teachers tell us that she is a very lovely girl, who is so helpful, so nice and so kind. We were concerned that this was because she was dealing with two siblings who had special needs at home and so she felt she needed to be good. We were worried that one day she would crack. Hearing Stella asserting herself was music to my ears. A few weeks after this I saw her pushing her brother. She was treating him as a regular sibling. I don’t condone violence, but this was a hugely positive step; it’s the little things that are important.”
Parents have also shared that they’ve noticed the dynamics at home have changed. Their children are playing together more often and establishing stronger relationships. Children’s group participants also seem more accepting, more patient and less angry with their siblings. As one parent puts it, “We are more of a regular family.”
Both Kim Peterson and Joanne Greenall want to live in a warm, welcoming and accepting community, one that embraces people whatever their abilities. They are strong advocates for their families and the two programs, Walking in My Shoes and the Children’s Sibling Group, as they believe they are helping to create the community in which they want to live.
See www.citizenadvocacy.org for details.