A child with a disability may struggle to fit in. As a parent, it’s natural to hope extended family will make a special effort to accept and include your child.

Unfortunately, that’s not often the case. Perhaps Grandma and Grandpa are hesitant to hold your baby or don’t take an interest in the way your child communicates. Maybe your sister invites the other cousins for sleep-overs – but makes no mention of your child with a disability.

If your child has difficult behaviours, you may find relatives shun her at family events or call your parenting skills into question. And some parents who are struggling to maintain a gruelling therapy regime are surprised to find that family members don’t come forward to help.

“Often families are very disappointed with the reactions of extended family,” says Bloorview social worker Anna Marie Batelaan. “They feel judged and there’s a lack of concrete family support in terms of babysitting, respite and including the child with a disability in activities with their cousins. We do hear of some extraordinary relatives and friends who step up to the plate, but they seem to be the exception.”

Some parents attempt to improve their child’s acceptance by educating family members. Others decide to cut ties with relatives who aren’t supportive. Many reach out to friends, respite services and support groups or enjoy informal gatherings with other families of kids with disabilities where they feel understood.

Here are some tips from parents and experts:

Call a family meeting
When their daughter Emily was three, Sandra and Vito Bigioni hosted a get-together at their home to educate family and friends about Emily’s disability. They explained Emily’s diagnosis and physical and communication needs, then provided practical strategies such as how to hold Emily when taking her out of her wheelchair; let her make choices with picture symbols; and read her cues. They put together a folder for each participant that included a handout on tips, Polaroid pictures they’d taken to illustrate the concepts, and a couple of picture-symbol samples.

“We felt that in order for our daughter to fit in, people were going to have to know these nitty-gritty details,” Sandra says. “We wanted to take away the fear of: ‘I don’t know what to do.’ We kept it simple and told everyone that when they walked away, we didn’t want them to feel overwhelmed, but rather to think to themselves: ‘Next time I see Emily, I’m going to try that.’”

Ask your social worker for tips on how to educate family members and ask for help in concrete ways.

Make a busy bag
When you take your child to family events, pop his or her favourite accessible activities into a small knapsack or cloth bag. It could be colouring books and markers, dolls, puzzles, characters or storybooks.

“At a family event, this allows them to participate and do their own thing,” says Sandra Bigioni, who came up with the concept for her daughter Emily. “Also, other children will be curious about your child’s busy bag and drop by to investigate and play.”

Pick supportive people and services
Some parents who aren’t successful in promoting their child’s inclusion with extended family may choose to spend more time with friends who understand and with other families of children with disabilities.

“Some parents spend the afternoons together or do activities, join support groups or go to Easter Seals family camp together,” says Bloorview social worker Barb Germon. “They report loving and enjoying these events and feeling welcomed, accepted and less alone.” For caregiving help, “families often turn to respite services, Special Services at Home, private babysitting, Extend-A-Family, Bloorview overnight respite, SafeHaven, Meta Centre and Reena to name a few. But often there are wait lists and high charges.”