Angela O'Brien is relentless. That word might not be the first you'd choose to describe the Lewisville mom; if anything, you'd probably think of her as the kind of easygoing ally you could strike up a conversation with before the PTA meeting starts or in the endless line for tickets at the school carnival. But O'Brien, a self-described introvert, knows from experience that if anything is going to keep her 10-year-old daughter with Down syndrome on track for a lifetime dealing with other people and enjoying meaningful relationships of her own, it's going to be Mom — and an unshakeable determination to push past her own comfort zone to reach out and make friends and connections for young Casey at every opportunity.
"It's just that I have to be more," she says with dogged good humor. "I have to encourage more and I have to take just any opportunity." Sometimes that means stopping to visit with other moms when she'd rather be reading a book or enjoying some downtime on her own. "I need to go over and talk to that mom and get to know her daughter — [you have to] put your daughter and yourself in more situations where those natural friendships can occur. … I'm more of an introvert, and that's harder for me."
Without this kind of consistent support, children with special needs, such as autism and Down syndrome, may struggle to cultivate friendships with other children. Without lasting friendships, they can end up feeling isolated and sad, while their parents sit helplessly on the sidelines, wishing they could help their child connect. Compounding the situation is the feeling that social problems feel like a personal failure to everyone in the picture.
Fortunately, there's nothing magical about connecting with others; socialization turns out to be a skill children can master with time and practice. "The good news is that socialization can be taught," writes Lynn Kern Koegel, Ph.D., co-founder of the renowned Koegel Autism Center at the University of California, Santa Barbara, in her newly revised classic Overcoming Autism: Finding the Answers, Strategy, and Hope That Can Transform a Child's Life (co-authored with Claire LaZebnik). "The bad news is that it's hard to approach this issue calmly and methodically, because it touches on so many things that are vitally important to us, like love, friendship and companionship."
The human connection
Friendship is far from icing on the cake for children with special needs. Social problems in childhood can lead to all sorts of problems later in life, Koegel says, from depression, anxiety and difficulty finding a job to struggles finding enjoyable leisure pursuits to build a balanced life. And the repercussions of a friendless childhood touch the whole family. "Parents of children with disabilities report that having their child fail socially is more stressful and disconcerting than having their child fail academically," Koegel writes.
Yet, it's all too easy to gloss over cases of isolation among children with special needs. There's a common assumption that as long as a child who's alone at lunch or recess isn't showing overt signs of distress, the child doesn't want or need help connecting with others. "One of the things that we know from the literature is that if a child's having behavior problems that are disruptive, everybody jumps into line and works on that," Koegel observes. "But if a child is just not doing really well socially, a lot of people just ignore that problem, not realizing that it is a huge problem. So a lot of it goes untreated."
Many times, the eyes on children during unstructured periods when friendships are born aren't necessarily the most qualified eyes for the job. In her role as a consultant, Koegel says she often encounters staff members shrugging off instances of isolation with explanations such as: "Well, he just seems to want to be alone at lunch." She talks with parents who've given up the constant grind of orchestrating successful playdates, allowing the kids to hang out with Mom and Dad instead. "But the problem is that it's just feeding into what the difficulties are," Koegel says.
When a child with special needs is alone, parents and teachers need to ask why. "Are they avoiding the situation because they don't have the fundamental social skills in order to join?" asks Crystal Beadle, Ph.D., a neuropsychologist at Our Children's House – Baylor at Frisco. "Or are they holding back because they have the skills but there's some anxiety there, they're afraid to use the skills, or do they have the skills but haven't had the opportunity to practice them yet?"
Compounding these challenges are very normal social hurdles such as the “you're not my friend anymore!" struggle that so many children go through. These are challenging social developments for any family, but for the families of children with special needs, they can feel like one more insurmountable barricade.
Whether children with special needs are having trouble making friends because of inherent challenges with socialization, emotional issues or simply by dint of being different, the trick to helping them connect is to weave opportunities to practice social skills into the very fabric of their everyday lives. Finding ways to interact with others is often best absorbed during other activities, rather than as an isolated program of therapy. For example, a speech therapist might help a child work on appropriate ways to comment on what other people say or how to ask questions.
Parents sometimes feel at a loss over what specific things they should expect their children to be doing socially. "Parents always ask me, 'What should my child be doing in social situations?'" Koegel writes. “And my answer is always the same: 'What are the other children doing?'" Are the other girls at recess playing imaginary games about animals? Are they setting up house underneath the slide? Are the boys all playing soccer? What about the ones who aren't? To find out where a child with special needs can plug in, it's important to know what the possibilities even are.
Follow the leader
With summer vacation looming, many parents worry they won't be able to provide enough opportunities for children to connect with others once school is out. The pressure's off, though, once you realize that helping children gain social skills and build friendships is a year-round priority. Summer camps can fill some of that hole when school drops out of the picture, but finding the right ones and the right mix comes back to listening to your child.
To help your special needs child socially flourish, sometimes you have to lead and sometimes you need to follow. Start out by following your child's lead — your child's interests should lead the way toward opportunities for social connections. "We found that some of the most successful social therapies relate to really working on the kids' strengths," Koegel says. "If it's possible to do an intervention program with the child's special interests in mind, then we kind of have the wind at our backs."
Figure out what your child is interested in. Does he love to watch trucks at work and then play with his own? Is she a video gamer at heart? Look for other groups of other children who also enjoy these things. You might find them in a club for typical children, or you might find them within a support group for children with special needs. Again, follow your child's lead to choose which type of group might make the most comfortable fit. Special needs groups can be a refuge for many children, but they make others feel isolated and unwanted. "Are they looking for others like them to normalize their situation, or are they spending every moment trying to be like everyone else?" Beadle asks.
Once you've found a group that gives your child an opportunity to interact in a natural way with others who share similar interests, it's time to take the lead. Maybe your child loves dance but isn't physically able to execute the routines the other girls are whipping through for competition. Could she help with hair and makeup? Could she be a wardrobe assistant?
"Don't be afraid to call places you wouldn't typically think of as handling special needs and saying, 'My child is interested in this — how can we make it happen?'" Beadle says. "A lot of business owners are willing to make things happen. It may take some creativity and a lot of pre-planning, but you can usually work around any type of limitation, whether it be that you stay with your child and help out or whether it be that they hire someone specifically with that type of training."
Keep typical kids in the mix
In the campaign to connect your special needs child with peers, don't forget to make typical children part of your plan. Many children can be scared off by a disability or special need, but honest communication easily bridges that gap. Parents are often more sensitive about misconceptions and fears than kids. Beadle says, "Parents panic, because the kids are asking a legitimate question: 'What's different about them? I see something different about them; help me understand it.' And a simple answer is all that's needed."
Learning to interact with people of different needs and abilities benefits every child. A British study recently showed that children who regularly interact with people with disabilities are less fearful of them and more empathetic. Even just watching other children be around children with special needs improved kids' attitudes.
When you're scoping the scene for potential playmates, let kids come together naturally. “[Finding] peers doesn't necessarily mean same age, same grade," Beadle reminds parents, encouraging instead matching playmates by skill, cognitive ability and interest levels. Tina Puckett, an Allen mother of an 8-year-old son on the autism spectrum, discovered that playing with the opposite gender suits her son's style. He responds well, she says, to the more mothering and even bossy style of little girls that age. "From what I can find, he finds that comforting — someone to kind of lead him," she explains.
At school, look for peer buddy programs that pair typical children with partners who have special needs — Circle of Friends (circleofriends.org) and PALS (palusa.org) are two programs popular among Dallas/Fort Worth-area schools. These peers provide matter-of-fact, tone-sensitive feedback and solutions that guide their less adept buddies out of muddy social waters. If a child with special needs inadvertently says something inappropriate to someone, a peer buddy can provide the solution. "They'll help you fix it, like say, 'Oh, just go ask him if he's mad at you.’ Or, 'Just go say I didn't mean to hurt your feelings,'" Koegel explains.
Even having a sibling on the scene offers a natural opportunity for practicing social skills. "Both of my boys are adopted, and I do find having a sibling makes a difference because there are even social skills going on at home," Puckett says. "You have to interact with and teach your son: 'Your younger sibling's watching you. You've got to watch what you're doing. This is how you treat someone.'"
Staying the course
As Koegel has written, “Few things are more time-consuming and exhausting than keeping your child socially interactive." And the feelings don't stop coming. Parents who think they've worked through the initial shock of their child's diagnosis, Beadle says, may feel that wound ripped open every time they see other children doing something their own child isn't quite ready for (or perhaps never will be). "There's that whole sense of renewed grief over that," she says. "There's also the sense of embarrassment — you know, 'That's my kid and everybody knows it. Is it something I'm doing? Are they judging me?'"
Still, as Puckett observes, it's not about getting through a school year or making it through the summer. "It's just a daily job that you've got to keep the social skills up," she says. "This is going to take them through life. You know, I don't want him to be secluded and alone. I want him to learn how to interact and be a vital part of our society — that's one of my missions. I want him to be able to function and being with other people is a big part of it."
In Overcoming Autism, Koegel paints the perspective clearly: "On the list of the million things you feel you have to do for your child, getting him to play a game with a friend may seem a lot lower down than, say, getting him to speak correctly. But it's not. The most important thing for your child is to have friends and close relationships throughout his entire life."
In the end — and especially as kids head into summer vacation — it's important to remember not to succumb to overkill. "Your kids are kids too," Beadle reminds parents. "Yes, they've got a disability or some type of special need, but they're still kids. They need opportunities to have downtime, to have playtime. Not everything has to be therapeutic or geared towards building a certain skill."
As Puckett says, all parents need to explore the shape of their children's personalities and needs. "I think the biggest thing for me is to let my son be who he is and accept that he may not have a big group of people that he goes out with," she adds. "He may not have a really close best friend. He may not have the type of friends that I grew up with. And I need to learn to accept who he is, who he's comfortable with."
At the same time, Koegel warns parents not to allow anyone, professional or not, to convince them that playdates and socialization aren't necessary. "It's really critical for both short-term and long-term functioning — happiness, long-term positive outcomes, getting along in the workplace and even just everyday happiness," she says.
And that's the kind of long-term reward that keeps Angela O'Brien parenting in her relentless way. "You can't let your guard down," she muses. "You just kind of always have to be thinking about every situation. Is there an opportunity here to make a friend and to socialize? Because the more they do now, the better off they are when they're older. Every opportunity, every chance is a learning opportunity."
Published April 2014
