Nurturing Everyone in a Special Needs Household
Parenting multiple children means making sure they all feel loved and cared for equally. When you add to that the special needs of a child with a disability, that job becomes a little more difficult.
Parents like Elizabeth Boyle and her husband Terrence know that the needs of their 5-year-old son Matthew, who has autism spectrum disorder, often affect their 7-year-old son, Nicholas, a typically developing child. So they make particular efforts to make Nicholas feel special, too.
"We try not to think of it as special treatment but, rather, finding time to give some equity in our relationship with him," says Elizabeth Boyle of Seattle, Wash.
Dr. Scott L. Barkin, executive director of the Block Institute in Brooklyn, N.Y., says concerns of parents of a special needs child with typically developing siblings can include any or all of the following:
- As a parent am I giving each of my children all the attention they need and desire, or am I neglecting my "typically" developing child(ren)?
- Will my typically developing child have to make too many sacrifices?
- Will my children develop a relationship? Will they play together?
- Will my typically developing child become resentful?
One thing Boyle and her husband try to accomplish is to give Nicholas one-on-one time. "We've taken him on individual trips to visit family [or] to visit something that he was interested in."
Dr. Barkin agrees that this is a good way to make sure your typically developing children feel they are getting the attention they desire.
"My advice to parents isn't simply to make sure you spend X amount of time with each child," Barkin says. "This needs to be done in conjunction with investing in processing who your child is. Every child needs to believe they are understood, appreciated, regarded and acknowledged. What each child requires to feel that is different."
Lynne Banki of Sammamish, Wash., is the mother of three children: 9-year-old Damian and 4-year-old Atesha, both typically developing children, and 12-year-old Caspian, who is autistic. "I was afraid Damian would get lost in the chaos of a special needs brother and a new baby sister," says Banki, author with her son, Caspian, of What Autism Means to Me (Lifelight Books, 2003). "One of our late-night conversations revealed his interest in acting. Damian wanted to know how kids got chosen for TV roles and whether or not he could do film work as well."
Banki followed through with Damian's interest just as she would have investigated a new therapy for Caspian. "We got headshots, put together a resume and got an agent," she says. "He did some pretty fun stuff. [He] had parts in a few films and was even in a Microsoft commercial."
Banki understood her son's need for something that defined him separately from his brother's autism. As Atesha grows older, Banki will continue this thoughtful nurturing of each of her children's personal interests.
Too Many Sacrifices?
What is a typical child expected to give up when he has a disabled sibling?
Joy Daniel is a Seattle mother of two: 5-year-old Margaux and 7-year-old Audrey, who is deaf and autistic. Daniel is aware that Margaux has fewer play date opportunities than she would if Audrey was less of a handful.
"We only visit very close friends who understand how it's going to be and can handle it," she says. "As a single mother, I find balancing the needs of both girls particularly challenging because Audrey needs full attention nearly all the time."
Dr. Barkin understands this concern. "Each child should be encouraged to develop their own interests and friends," he says. "A balance of time spent with peers with time for siblings and family should be fostered."
Though Daniel attempts to limit Margaux's feelings of responsibility for Audrey somewhat, she also realizes that Margaux benefits from the experience of having a sister with autism. "She's very caring about Audrey [and] concerned with keeping her involved when others are there," Danieln says. "She lights up with happiness when Audrey connects with her in some way – a kiss, a hug, an exchange of toys."
Banki's two typical children react in very different ways to Caspian's disability. Damian and Caspian, who are only three years apart in age, grew up almost like twins. Atesha, who is eight years younger than Caspian, has less tolerance for his differences.
"But she is very aware of autism," Banki says. "She calls it 'optism' and we talk about it frequently. It means everything to me that my children are friends. Of course they still fight, but they are family."
Dr. Barkin recommends that parents encourage the development of a relationship between siblings, accepting that each child has limitations but encouraging their potential.
"Relationships between siblings, with or without the presence of a disability, develop in encouraging, nurturing environments," Dr. Barkin says. "These relationships require love, commitment, respect, patience, communication and universally are not always easy."
One thing all these moms strive to remember is that their typical children have feelings that must be allowed to be expressed. Programs such as Sibshops, which has workshops in the United States and internationally, acknowledge that being the brother or sister of a special needs kid can be difficult. Sometimes siblings feel good; sometimes they feel bad. And a lot of the time they feel somewhere in between.
"Brothers and sisters of special needs kids express the entire spectrum of feelings about the sibling with a disability," Dr. Barkin says.
"Margaux asks why her sister has autism," Daniel says. "I tell Margaux it's OK to feel upset about it but help her to see the bigger picture."
Boyle's family also tries to strike a balance. "Nicholas has his moments as well, when he struggles to understand why his brother is different when other brothers aren't," she says. "We try to point out that Matthew is our responsibility – that God gave us him because he knew we would be the best family for him – and that smoothes out some of the rougher moments."