Special-needs parents fight for what’s best for their children on a daily basis. Often, this means a busy schedule full of doctor and therapy appointments, daily care and dealing with stares and inappropriate comments from strangers.
“It’s not an easy life, but our children are perfect for us,” says Rachel Brewer. “We don’t take any milestone for granted.”
Brewer’s daughter, Ava, who is almost 3, has Angelman Syndrome, a neuro-genetic disorder, causing her to be nonverbal and have seizures. The Brewers spend several days a week at therapy and Ava takes medication for her seizures.
Creating an open dialogue among parents of all children is the best way to teach “typical” children to interact with “special needs” children, says Brewer, who lives in Maumelle. But starting the conversation is not always easy.
“Many parents don’t know how to approach us,” she says. “Many stare or don’t make eye contact.”
Christy Etters has had similar experiences with people asking about her 9-year-old son, Jackson, who has autism.
“People look at you differently,” she says. “We’re normal people. Our kids are just as human. They may act differently or need a little extra help in certain areas.”
Both moms say they prefer for strangers to simply strike up a conversation about their special-needs children or ask questions. As Brewer says, “Honesty is the best policy. There’s no other way to learn.”
“If people have questions, they should just ask,” says Etters, who lives in Conway. “I’ll tell them anything. I’m an open book.”
After all, “special-needs parents are just parents,” Brewer says. “We like it when another parent takes an interest.”
She says special-needs parents often want to educate others about their children, but feel that “typical” parents aren’t interested.
“I’m not a shy person,” Brewer says. “When I see people who seem interested, I engage them in conversation.”
Being open and honest is most important, Etters says, but she realizes most people don’t know how to ask questions about their children because “they think we’ll get offended.”
People can say things that “aren’t the nicest,” but Brewer says she tries to focus on the “spirit” of the comment, rather than the actual words. Generally, she says she doesn’t think people mean to be rude; they just don’t know how to approach special-needs parents.
Questions like, “what’s wrong with your kid?” may “come across harsh,” but it likely wasn’t meant that way, she says. Comments like, “I don’t know how you do it,” can be irritating for special-needs parents, even though Brewer says she knows people mean to be empathetic. For her, that statement implies that she should be doing more: “As a mom, you do what you have to for you child and you think ‘what else should I be doing?’”
Amie Gaither, a social worker at Arkansas Children’s Hospital, urges special-needs parents to try not to take difficult comments too personally, though she admits it can be difficult. “Lack of information leads to those inappropriate comments and questions,” she says.
It shouldn’t be assumed that people with disabilities don’t understand or can’t communicate, Brewer says. Talking directly to the special-needs child is “always refreshing,” she says. “It’s treating a person with disabilities like a person.”
Brewer says strangers are most curious about Ava because she is nonverbal, but is very expressive, claps and is learning sign language. She says people often want to know why she doesn’t talk back.
Etters says Jackson’s service dog, Chester, is a good conversation starter. She says it seems easier for people to ask questions about the service dog than to ask about Jackson.
Often, it’s not what’s said, but the actions that parents take that can be most upsetting, Brewer says. Both Brewer and Etters say they’ve experienced parents pulling their children off of swing sets to get away from their special-needs children.
“That’s teaching your child that something is wrong,” Etters says. “If you’re curious, don’t whisper behind my back. If you’re going to talk about me, come to my face and talk about me.”
Gaither says parents should lead by example in teaching their children about being respectful and accepting of others. When parents steer their children away from special-needs people, it sends the message that it’s OK to avoid people who are different. Instead, parents should show their kids that special-needs children can be friends too, Gaither says.
Many special-needs parents get frustrated because they feel that other parents don’t see that “we’re just normal parents, and want what’s best for our children,” Etters says. Brewer agrees: “People don’t understand, I’m just a mom too.”
Gaither says it’s important to remember that special-needs kids are still kids and “all kids are unique, with their own personalities and traits that are special.”
Also, Brewer urges parents to focus on “how our kids are similar and not different, and impart that to your child.”
She says Ava doesn’t notice people’s negative reactions: “She’s so happy and loving. She’s never met someone she didn’t want to be friends with. I don’t want to chastise people for not wanting to get to know her. It’s their loss.”
Parents of special-needs kids should be approached to discuss their children just like any other parent, Gaither says. She suggests asking special-needs parents specific questions about their children, rather than making general statements. And, she says, a smile goes a long way.
“Special-needs parents don’t want to be treated any differently,” she says. “They don’t want pity, but appreciate support.”
Finding a support system is essential to dealing with negative comments from strangers. Most special-needs parents look to family, friends and other special-needs parents for support. There are also many online communities for special-needs parents, Gaither says.
Both Brewer and Etters say that before having children, they had little experience with special needs kids. Growing up, Brewer admits that she never knew many special-needs people, and didn’t know how to approach them so she stayed away. Now that she has a special-needs child, she says avoiding special-needs people “shows more ignorance.”
“The more comfortable parents become with people with special needs, the better we’ll all be,” she says.