Date: September 12, 2011
When the Baldwins traveled from Apex to a family reunion in Ohio last year, their son, Cade, 11, who has high-functioning autism, refused to get out of the car.
"There were a lot of kids running around, a lot of unstructured play, and he doesn't like that type of situation at all," says his mom, Jennifer Baldwin. "That was an outing 'fail.'"
Every parent knows the embarrassment that comes when a child is uncooperative or makes a scene in public. From the toddler tantrum punctuated with screams and flailing limbs to the preschooler who insists (loudly!) on a toy, the stress is often compounded by the stares of onlookers. The good news is that these scenes tend to become less frequent as children age, making outings easier.
But when your child has a special need, it may seem like every foray into the public has the potential for disaster. Depending on your child's needs, these challenges might ease as she gets older, or they might be lifelong considerations.
We talked with some local parents who offer their thoughts and suggestions for taking kids with varying special needs out and about.
Be clear with others about your child's needs
Cade's family has learned — "through trial and error, really," Baldwin says — how to navigate the uncharted territory of social events, outings, and even just trips to the store with him.
After the episode at the reunion, the Baldwins attended a Halloween party and "took things step by step," Baldwin says. "We let Cade know that although he knew the owners of the house and the children, there would be people there he didn't know. I told him no one would talk to him if he didn't want. Then I spoke with the guests and said, 'Don't approach him right away, let him do his own thing.'"
At first, Cade wouldn't get out of the car. Then Baldwin enticed him into the bonus room, which was quiet. They eventually progressed upstairs to where the food was. "That was a big gain for us," she says. "He was at the party and didn't mind that there were other people there that he didn't know."
What helped, she says, is that the other guests didn't push for interaction, which could cause him stress. The Baldwins learned that making the effort to create a comfortable environment for their son made a big difference in the success of the party.
Follow your child's lead
Of course, what's comfortable for each child is different.
Claire Constantikes' 10-year-old son, George, has food allergies — but not just to peanuts or eggs. "He's allergic to all but about six foods," she says. George has an allergic disease called eosinophilic esophagitis and requires a feeding tube.
The condition creates challenges to social outings. "It seems like every social event revolves around food in some way," says the Wake Forest mom. "[But] we've taken the approach that he shouldn't be ashamed of his tube. We won't go off into a corner and hide when it's time for him to eat. We'll stay where we are."
Sometimes, she says, people ask questions and, far from feeling offended, the family welcomes them, talking about George's condition and other differences among children. George is more than happy to participate in such conversations.
Constantikes recalls when George was at a birthday party talking to a boy who said he hated broccoli and spinach. George said he wished he could eat those foods. The other child said, "That's weird." Rather than sulking away in shame, George stood up tall. "You think that's weird?" he said. Then he lifted his shirt and showed him his feeding tube. "Take a look at this!"
"Living with this [condition] has let us have conversations with friends and people we don't know about how the challenges in our life can not only make us more compassionate but open our eyes to the challenges that others face, too," Constantikes says.
Consider a helping hand (or paw)
In the case of the Silvestre family of Apex, even the simplest outings became more challenging — and potentially dangerous — as their son Hunter, who is severely autistic, gained mobility and started to wander off.
"He's an escape artist," says his mother, Dionne. "I'd try holding his hand, but he'd squirm out. And even the 5-foot fence in our yard didn't stop him. But if you put a locator band on his wrist, he'd try to take — or chew — it right off."
Finally, the Silvestres adopted Bow, a specially trained service dog. "He's made a huge difference," Silvestre says. Not only is Bow trained in search and rescue — in case Hunter slips away — but the two can be attached with special vests and tethers. "I don't have to worry about Hunter running out of the store anymore," she says.
Another benefit? "It's made Hunter a little more social," Silvestre says. Kids are naturally attracted to the gentle dog, who's part Great Dane, part Labrador, and even adults will ask questions about Bow when the family goes out. Hunter is fascinated that people are interested in his dog.
And the support and companionship have gone both ways. When Bow had a veterinarian checkup, Hunter went along and helped calm the dog. "It's like they're connected spiritually," Silvestre says.
Find support and community
Sally Hinton of Cary remembers the time she took her 12-year-old son, Brandon, who has cerebral palsy, to the park and they butted heads over a climbing structure she knew she wouldn't be able to spot him on. "It turned into a scene, and I had to practically pry him off the bars," Hinton says. Other parents were staring openly. "I understand it's hard to not stare, but on the other hand, I sometimes really wish it weren't that way," she says sadly.
Such occurrences can be difficult for parents — and also for their other children, who may feel that their brother or sister gets more attention or impacts their lives in a negative way. With these challenges, it's easy for families to feel isolated.
To help her family deal with those kinds of issues, Hinton makes sure her other children — ages 3, 9 and 10 — have peers who understand their family's situation.
"They attend three-hour workshops for siblings of special needs kids, called 'sibshops,'" she says. "It's a safe place to talk about the good and the bad that comes along with having a special-needs sibling. My kids really look forward to going every month."
Spending time with other families who know what it's like to live with a child with special needs can provide encouragement, empathy, even a new perspective.
"Families with special-needs children have cycles of good days, manageable days and not-so-good days," Constantikes says. "Living with [these challenges] means knowing there will be moments when things are going to be low, and accepting that, too."
Parents recommend getting involved with organizations that support families of children with special needs. The Family Support Network (www.fsnnc.org) hosts the "sibshops" Hinton's children attend and also offers family events throughout the year, such as holiday parties and a spring festival.
In addition, some local businesses offer outings exclusively for families of children with special needs (see sidebar). Attending these events can reduce stress and allow everyone in the family a night of fun and community. n
Kathleen M. Reilly is a Triangle mom and writer.
Fun and stress-free family outings
These businesses offer activities just for families of children with special needs. For details and additional recreational and enrichment opportunities for families, see the resource listings beginning on p. 45 of our Special Kids guide.
* Monkey Joe's Special Needs Night, visit www.monkeyjoes.com
* Marbles Kids Museum Family Fun Night, visit www.marbleskidsmuseum.org
* Bounce Back Kids, visit www.bouncebackkids.org
* N.C. FACES (Food Allergic Children Excelling Safely), visit www.ncfaces.org