It’s homework time again. Six-year-old Stephanie comes quickly, grabbing her folder and taking her designated place at the table.
Meanwhile, older brother Andrew – who has apraxia and is on the autism spectrum –hides, argues, and whines. The last time he was required to complete the entire page of math problems, three hours of tears and frustration followed – more than any 8-year-old should have to endure after a day of school, therapy, more school and more therapy. I put on my best smile and pray that my positive attitude about word problems will be contagious.
As it turns out, Stephanie asks me to correct her work before Andrew even finishes writing his name. She launches into extra credit while her brother ducks under the table, already assuming that his work will be too hard.
“Come on, buddy,” I say, coaxing him out. “You made it to the table. That’s one chocolate chip already. Let’s get going!”
This prompts a question from his little sister: “Why does he always get rewarded for doing homework and I don’t?”
It’s a legitimate question. After all, if Andrew starts telling us a story, we hang on his every word. During bedtime reading, if I ask a question about a character, Stephanie is told to be quiet so her brother has a chance to answer first.
Of course it’s unfair. She doesn’t realize that his severe speech delay and challenges with language processing are something he needs to work on extremely hard, so when he willingly participates in a conversation, we kick into therapy mode.
Raising siblings of mixed abilities and needs is challenging, to say the least. How do you balance the needs of both when one child requires much more time, energy and attention? How do you keep the neurotypical child from resenting the sibling with special needs? What is their responsibility as a sibling anyway?
I’ve been debating how to talk to Stephanie about her brother’s apraxia and Autism Spectrum Disorder, especially now that she’s been asking questions about why her brother needs extra assistance. Though she has an innate ability to notice when Andrew might need help with directions, other things confuse her, much as they do my husband and me. Yet she’s patient and fiercely loyal to him, as he is to her.
I wonder if she notices that her life has a tendency to revolve around his needs most of the time. It’s a common predicament for siblings of children with special needs – often for the duration of their lives. While numerous activities and advocacy groups exist for kids with special needs, there are few for the typically developing siblings.
Don Meyer, founder of Sibshops, which hosts events for siblings who have a brother or sister with a special need, points out that the siblings will likely end up grappling with the same issues their parents do, including numerous therapist and doctor appointments and the never-ending quest for resources. Recently, Easter Seals teamed up with MassMutual to research adult siblings of people with disabilities and found that attention is “typically paid to caregivers in the role of spouse, parent, or adult child, but most of the 65 million caregivers in the United States are siblings.”
Honest info, please
Meyer says that the greatest need for siblings is information – about the disability, what the community offers, and even what their roles will be in the future. This information can start when the children are quite young, as Kelly Waterman found out. Her 17-year-old daughter Sara was born with Down syndrome and had three life-saving surgeries by the time she was 3. Brother Nick, five years younger, is typically developing. When Nick was about 4, he announced to his mom that Sara had Down syndrome. “We hadn’t gotten into any particulars yet, so I was surprised,” Kelly says. “He had heard it from someone and just wanted to let me know. He was very nonchalant about it.”
Kelly told her son that Sara was born with a condition called DS, and that was why her speech was different and it was sometimes harder for her to learn and do things. “She can learn to speak and do most everything other children can do – it just might take longer,” Kelly explained.
Jessica McCoy approached her typical son in a similar way. Twenty-month-old Holden prefers to wrestle and run, which can be dangerous to his older brother – 6-year-old Atticus, who was born with spina bifida. Atticus wears braces and is still getting used to his wheelchair; he often gets frustrated when he isn’t able to keep up with other children. Atticus isn’t aware of his limitations yet, and it was important for the boys to understand why there was a need for special care.
“We are always open and honest with the kids,” Jessica says. “We try to explain it in real terms that they can understand, but we don’t sugarcoat anything. They have to come to grips with the realities and seriousness of spina bifida.”
Brothers and sisters forever
According to the Easter Seals study, 80 percent of siblings say they have a close relationship with their sibling with a disability and that this relationship enhances their life, in comparison to 60 percent of general-public respondents who feel the same way about their sibling. When Kelly and her husband decided to have another baby after Sara, they read an article that said siblings of those with a disability tended to be more grounded in life, with successful careers and happy marriages. They grow up knowing life isn’t always easy and that one needs to put forth effort to succeed.
She already detects some of these qualities in Nick. “He is patient, understanding and very loving,” she says. “He volunteers as a peer to others with disabilities and is an advocate in his own way. His football and baseball team all look out for Sara and are like a team of big brothers.”
Tracy Wells has twin 6-year-olds – daughter Oaxie and son Bin, who was born with spina bifida. Bin has numerous doctors’ appointments and is unable to participate in rough activities. Recently, Oaxie came running to her parents in the middle of the night, telling them that Bin was crying. When they reached the bedroom, they noticed Bin had thrown up all over his bed. While husband Jon grabbed Bin and took him to the shower, Tracy began pulling up the sheets to wash them. Oaxie pitched right in.
“I told her thank you, she could go back to sleep and I would take care of it,” Tracy says. “Without saying anything, she began wrapping the fitted sheet on one side.”
“You love Sara more”
While siblings might be eager to help, some eventually notice that their needs seem to take a back seat to the child with a disability. One time Tracy’s family was checking out at the grocery store, and the cashier was going on and on talking to Bin. Meanwhile, Oaxie was standing right behind her brother, saying, “Hello! Hello!” The woman never heard her. “When we were walking out,” Tracy says, “Oaxie asked me why everyone talks to Bin and not her. It was hard to hear that out of the lips of a 3-year-old.”
Kelly remembers the day Nick suggested she loved her daughter more. After letting Nick know she loved him too, he said, “I know, but you love Sara more. But that is OK.” Kelly says it took everything in her not to cry. But she probed why Nick felt that way. “His observation of me helping her dress and cut up her food was interpreted as me loving her more,” Kelly says. “That was when I decided to discuss Sara’s special needs and that my heart loved them both exactly the same.”
She told him it was her job as a mother to help each child in the areas that they needed it, and that Sara was born with certain needs that Nick didn’t have. He listened and smiled, nodding that he understood. “He even began pitching in and feeling like a big boy,” Kelly says. “We did want to make sure he had a childhood and didn’t take on a parenting role, though.”
Meyer encourages open conversations like this. While developing Sibshop conferences throughout the country, he created panels of siblings to discuss what it is like being the sibling of someone with a special need. He asked these siblings to address what their parents did well. “Most were appreciative when their parents treated the child with a disability like every other kid,” Meyer says. When asked what they wish their parents had done differently, the majority of respondents said they wished their sibling had been asked to do more. “Many of them knew their brother or sister was capable of more, and yet parents didn’t have the high expectations that they should have,” Meyer says.
He recommends parents not make the child with the disability the center of the solar system. Instead, he encourages families to make community or church the center of the family.
Kelly put this principle to work by ensuring that little brother Nick had separate playdates when he was younger, and now the family attends his games as often as they attend functions for sister Sara.
By providing information and support, I know that my daughter will develop the same positive feelings about her relationship with her brother. She’s already more understanding when Andrew starts talking, and we’ve discovered he is more comfortable talking with her than anybody else. While we make sure she has the attention she deserves, we are hopeful they will remain the best of friends for life.
