Shannon* was upset when her father asked her not to bring her seven-year-old daughter, Pippa* to a family wedding. Pippa has autism spectrum disorder (ASD), a condition whose symptoms vary from child to child but can include repeating phrases or words, making noises to self-soothe, becoming overwhelmed in stimulating environments and preferring less physical and eye contact than the neurotypical child. Pippa’s grandfather said he didn’t want her to ruin the festivities by being “disruptive.”
Parents of kids with special needs are often stressed out and stretched thin: physically, emotionally and financially. But instead of support, many find themselves facing rejection, criticism, and judgment from family members that they’d hoped would have their backs.
“It hurts worse when [that response] comes from family, because they are supposed to love you unconditionally,” Stephanie* says. The mother-of-two has been shamed at family gatherings for the atypical behaviour of her two sons, Robert* (seven) and Andrew* (10), both of whom are on the spectrum. In family settings, they may refuse to eat what other people are eating, engage in self-soothing behaviours like humming and bouncing in their seats, and repeat certain expressions. Stephanie’s uncle has told her, on more than one occasion, that the boys just need corporal punishment. “He believes there is nothing wrong with them except poor parenting,” she says.
“I felt completely unsupported when I told my parents and siblings about my daughter’s ADHD and learning disabilities and how they were making life stressful and challenging both at home and school,” recalls Peter*, the single father of now-13-year-old Kate*. “She seems fine to me,” my mother would say. “They’re always putting labels on kids these days.” Meanwhile, Kate’s anxiety was mounting, her grades were dropping, and her behaviours were escalating, but Peter felt like he had nobody close to confide in. “I think my mom wanted to reassure me there was nothing wrong, but by denying Kate’s diagnoses, she couldn’t be there for me as a sounding board, as I tried to support my daughter with her frustrations, sadness and plummeting self-confidence.”
Special Needs Parenting: 8 Tips for successful family get-togethersIt means the world when you feel like your family has your back, when you’re raising a child with special needs. Here are some coping strategies to help save and strengthen family bonds—or get the support you need (and deserve) from more reliable sources.
1. Educate your loved ones
Psychiatrist Doron Almagor, M.D., director of The Possibilities Clinic and chair of The Canadian Attention Deficit Hyperactivity Disorder Resource Alliance, says, “One of the biggest issues parents face is feeling criticized by other family members who don’t appreciate their child’s condition.” He recommends that parents first educate themselves, then share that knowledge with family members.
Your child’s healthcare providers should be able to recommend reading materials (like pamphlets or books) as well as reliable websites and YouTube videos full of easy-to-understand information. Some may even give you sample “scripts” for talking to family members about various diagnoses and addressing follow-up questions or less-than-positive reactions.
“The more you know, the more you’re able to become an advocate for the disability,” says Almagor. “You can challenge family members to think about what life would be like if they had to go without something they need—like glasses, for example—for a whole day, to help people walk in the child’s shoes.”
2. Do therapy with extended family
For relatives who’re a big part of your lives, who sincerely wanting to be supportive but are unable to move past certain stigmas or preconceived notions about a condition, family therapy sessions may help. “Often, doctors can validate a diagnosis where parents can’t,” Almagor explains.
Often extended family members are afraid or apprehensive about how to care for a child with special needs. Or they may be unsure of what role they now play, given the unexpected challenges the child has. “Ever since my daughter’s autism spectrum disorder diagnosis, my father, his wife and their three children have treated her differently,” says Shannon. “She is non-verbal and I believe this frightens them.”
Barb Borton, occupational therapist and director of rehabilitation and clinical services at the Rehabilitation Centre for Children in Winnipeg, confirms the benefit of therapy sessions to alleviate such fears. “Inviting Grandma or Grandpa to participate in the therapy sessions works to help them adapt and adjust,” she says. “If they can be involved early on in the process and ask their own questions, then the parents don’t have to be the conduit for everything.”
In these group sessions, extended family members can also receive first-hand training from providers to help them become more comfortable with any necessary interventions—for a child with autism, this may mean learning how to respond to a meltdown brought on by sensory overload.
3. Take a step back
If extended family members are still refusing to provide support, parents should begin to reevaluate those relationships. “Sometimes family members need to process their own feelings of guilt or shame,” says Ann Stocker, a registered psychotherapist with The Institute of Family Living in Toronto. “It’s okay to give them time and space, while making sure not to invalidate your own need for support.”
After trying repeatedly to teach his mother about Kate’s ADHD and learning challenges, through conversations and website links, Peter eventually realized he was only making myself feel more frustrated, since she refused to validate Kate’s struggles. “Eventually I threw in the towel. Kate didn’t feel seen, and I didn’t feel heard, and we both craved support, so we started looking elsewhere for support,” he says. “We still visit Mom, but our relationship is definitely not as close as it once was.”
Almagor notes that most family members have the child’s best interest at heart—but that doesn’t mean parents have to continue suffering through negative interactions that may be damaging to them or the child. “My advice is to repair a relationship if possible, and move on if it’s not,” he says.
4. Build your own support system
If parents can’t rely on family members, it’s important to build a network elsewhere. “It takes a village to raise any child, but especially one with special needs,” says Borton. Stocker agrees, suggesting that parents find a family network either in-person or online: “You can seek help through your child’s school, a community agency, or a faith community.”
Dani*, whose seven-year-old daughter, Annabelle*, is often shamed by a family member for her hyperactivity, impulsivity, and need to touch everything in her surroundings (all behaviours related to her daughter’s diagnoses of autism, ADHD, epilepsy and sensory processing disorder), says she depends on nearby friends for the support and love she needs to thrive.
“Our nearby friends are the ones who show up for my daughter when she has EEGs for her epilepsy,” says Dani. “One of my neighbours lent her an Elsa dress to wear at the hospital and another friend brought along her son and painted the kids’ faces. Friends have also given us a craft box, books, puzzles and board games to take with us for these appointments.” Dani doesn’t know what they’d do without her network. “I’ve embraced a belief in ‘framily,’” she says.