Seeing the long-suspected diagnosis written starkly in black and white brought conflicting emotions for wife and mom of two Jemma, but mostly she felt relief. “I was so glad to finally have an explanation for so many of our struggles, and ready to move forward with a plan,” she says. But when she shared the information with extended family – her 6-year-old had been diagnosed with high-functioning autism –she found resistance and even rejection. It was a shock to her, because Simon’s intense outbursts and lack of communication skills were obvious to everyone and had been a frequent topic of family conversation. Published November 2013
Jemma’s parents had often expressed their concern about discipline problems with Simon, and she hoped that the diagnosis would be an answer for all of them. “When they heard the word autism for the first time, they acted as if it couldn’t apply to Simon, even though all the signs were there,” Jemma says. “They wouldn’t even say the word or discuss the possibility.”
Their response – mirrored by Simon’s godparents – was yet another blow. “During a time when I needed my support system more than ever,” Jemma says, “they were absent.”
Chelle, mom of Dara, an 8-year-old with Down syndrome, had a similar experience with her family. “Everyone was accepting, because you can’t argue with the visible markers of Trisomy 21, but there was still conflict about the diagnosis,” she says. Acceptance, however, did not equal understanding. “They tried to be supportive, but often their knowledge was based on stereotypes or antiquated information,” Chelle says.
Her parents treated the diagnosis like a death sentence, convinced that Dara would never be able to care for herself and would need to be institutionalized. The negative attitude was a major blow for the wife and mother of three, who was counting on her extended family to offer the needed moral and physical support after the diagnosis. “Managing their expectations was just another hurdle in an already overwhelming situation,” she recalls.
There are no official statistics on the role of extended family in the lives of children with special needs, but many parents report less caregiver burnout and more effectiveness in therapy when grandparents and extended family are part of the team. “Special-needs diagnosis involves the whole family, and the larger the support system, the greater the chance for a positive outcome,” says Susan Wood, director and co-founder of the Hope for Autism Center of Fort Worth. It is very common, however, for these vital team members not to be available because they don’t understand or accept the diagnosis. When faced with this challenge, caregivers must recognize the causes of rejection and work to find common ground for the benefit of the child.
The anatomy of rejection
A new diagnosis represents a period of loss for the entire family, and a natural grieving process usually accompanies it. Denial is a huge part of that process for caregivers and extended family alike. Ruth D. Young, a neuro-educational specialist at Little Giant Steps, an educational consulting group that specializes in brain training in Plano, says this isn’t an uncommon response for the relatives of a newly diagnosed child. “Denial is the first stage of grief, so it is understandable that some family members would reject a diagnosis simply because the new information is difficult to hear and process at first,” she says.
Deep-seated fears and prejudices can also play into family members’ responses. “My parents came from a generation that didn’t discuss health issues,” Chelle says. “They were also raised in a culture where it was OK to shun people who were different.” Although her family wanted to treat Dara like all of the other grandchildren, they avoided talking directly to her and left her out of activities because they assumed she couldn’t participate.
Laurie Harrier, Ph.D., executive director of United Through H.O.P.E., a social skills program in Denton, points to a frequently overlooked reason for family members’ lack of understanding. “Often families reject a diagnosis because they aren’t present for everything like the parents,” she says. “Their viewpoint is different, because their experiences have been different.”
Rally the troops
When rejection from trusted family members collides with the raw emotions of that initial diagnosis, hurt feelings follow. Although it might seem easier to stuff those feelings inside, it is in the best interests of the child and caregivers to push past them to build a solid support system. This starts with open communication: Everyone voices their frustrations and fears and devises a list of goals they can achieve together. “It helped when I finally realized that it wasn’t about rejecting me or my child – it was more about fear of the diagnosis,” Jemma says.
Parents often have to work hard to get everyone on the same page. Wood believes families should look beyond the diagnosis and focus on problem-solving. “Help everyone to see that the child needs help,” she says, “and then work toward that goal.” She tells families to see the diagnosis as a simple change in parenting style and encourages everyone to give the change a chance to work.
Wood sees the most success for families when everyone is on board and actively participating in the treatment. “A large part of treatment revolves around re-teaching the adults how to respond to the child,” she says. “If you don’t have everyone on the same page, you are going to give conflicting messages.”
From here to acceptance
Experts suggest these steps to ensure that the entire family is working as a unit:
Outline the benefits of diagnosis. The aftermath of the initial diagnosis leans toward the negative. Will the child be labeled unfairly? Will their opportunities be restricted? Helping relatives to refocus on the positive aspects of diagnosis helps everyone to see it for what it is – a tool that helps to secure services and therapies that will allow the child to reach her fullest potential.
Provide accurate information about the diagnosis in bite-size chunks. Some relatives may need to be put on a need-to-know basis with the details. Instead of barraging them with info, provide a short list of reliable Internet links or stories and allow them some time and space to absorb them.
Give extended family ownership in the therapy process. Grandparents and other loved ones often feel lost in the new world of therapies and information. Help them to focus on a particular part of the process and give them an outlet for their efforts. Chelle asked her mother to take charge of teaching Dara to tie her shoes. “It was a relief for me to off load that task to someone else, and at the same time, it made my mom feel important,” Chelle says.
Model positive interactions with your child. Parents can teach the best way to handle their child’s unique needs by example. Jemma gave her family a scripted conversation that was helpful in calming Simon when he was overwhelmed, and as they began to follow the script, his grandparents gained confidence in soothing his tantrums.
Include extended family in therapy planning and IEP meetings. Getting family members involved provides an opportunity for them to grasp the overall strategy and see the progress.
Don’t get offended. Parenting a differently abled child requires a thick skin, and interactions with relatives are perfect for acquiring that tough exterior. It’s easier, particularly with family, to take comments personally and react in a way that causes conflict. Although it takes great patience, practice responding to negativity in a calm and neutral manner.
Have a plan to manage negative comments. It’s OK to be open to advice, but be willing to assert your authority over family choices when needed. Practice a standard response so you’ll be ready to head off unnecessary advice. Chelle has a pat answer whenever she feels like extended family are crossing the line: “Thank you for caring so much about our daughter, but we are the parents, so we will decide.” Spoken with a smile, this kind but firm statement reminds family not to overstep.
Keep the focus on the child and their abilities. With any new diagnosis, it’s easier to focus on what is not possible, and that can cause family members to lose focus. “Each child needs to be thought of as an individual rather than a diagnosis,” Chelle says. “Helping my family celebrate as my daughter achieved new milestones reminded us all that the diagnosis was just part of who she is.” Jemma says she worked diligently so her family could see that the diagnosis wasn’t something to fear. “It helped them to be reminded that my son was still the silly, sweet boy we all loved. The diagnosis helped explain some of his struggles, but it didn’t change what we all loved about him.”
The bumps in the road that followed Simon’s and Dara’s initial diagnosis are a distant memory, especially when the children happily talk and play with their grandparents. Chelle credits a steady diet of accurate information about the outcomes for kids with Down syndrome for her success in helping her parents to accept Dara. “They now know what is possible for Dara, and they are hopeful and engaged in helping her reach her potential,” she says.
For Jemma and Simon, the path to acceptance took patience. “My parents still don’t like to mention the diagnosis, but in some ways that is good,” Jemma says. “When they look at Simon, they just see Simon, and they are completely dedicated to doing whatever he needs.”
The names of the parents and children in this story have been changed.
