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Coping when your child has an ‘invisible’ disability

Mar 28, 2017 10:23AM ● Published by Today's Family

By Wendy Helfenbaum

Chances are, if you walk down the street pushing your child in a wheelchair, you’ll be greeted with compassionate smiles.  But what if your child has challenges nobody can see on the outside?  What if, although they ‘look perfectly fine’, you know that at any moment, your son may start flapping his arms and shrieking if the music is too loud in the grocery store, or that your daughter could start rubbing a stranger’s shirt?  You’d likely get judgmental stares, or even a ‘Can’t you control your own child?’ admonishment.

Kelly Mastin has been there.  After spending many years handling the complex medical challenges facing two of her three children, she’s become an expert in dealing with how the public perceives her family. Mastin’s daughter Chloe, 14, uses a wheelchair, is nonverbal and has symptoms similar to cerebral palsy. Mastin’s adopted son Zachary, also 14, was born addicted to cocaine. He suffered a stroke soon after birth, leaving him with many psychological and behavioral issues, including anxiety and mood disorders.  He also struggles with fine motor skills, such as tying his shoes and doing up zippers.

“Whenever people see me with Chloe using her walker or wheelchair, pretty much anything that child does is okay.  She’ll roll over to somebody and grab their phone out of their hands, and they’ll smile, pat her on the head and take their phone back, because they realize that she must lack judgment,” explains Mastin.

“But if Zachary were to do that, it’s deemed absolutely inappropriate, because they look at him and think he’s able-bodied and normal.”

When Zachary was younger and easily overwhelmed by the sights and sounds, Mastin would regularly carry him out of stores kicking and screaming, while strangers openly gaped.
For parents of children with ‘invisible’ disabilities – including depression, autism, ADHD, immune deficiencies and many more – daily life can be frustrating and lonely.  Rather than getting kindness or sympathy, parents are often judged in public, says occupational therapist Amy Ornelas.

“A lot of our kids have sensory issues that lead to anxiety.  From the outside, it looks like there’s absolutely nothing wrong, so when a child has a meltdown at a birthday party, people see it as a parent not disciplining their child properly,” explains Ornelas.

Dena Englander has felt those disapproving eyes. One recent Sunday afternoon, her daughter Adira, 4, needed shoes.  Shopping usually requires advanced planning, as Adira has autism, developmental delays and sensory processing issues.  But the shoe store was running a big sale, so off they went.  Afterwards, Dena decided to buy Adira a Batman t-shirt as a reward for behaving so well.  Then everything went downhill, fast.

“Adira held several t-shirts while I looked for the right size, but when I picked out the right one, she wanted them all,” recalls Dena.  “After I paid for the shirt, she flung it across the store and started stripping.  She also threw off her diaper – she’s not potty-trained – and screamed, ‘Don’t touch me!  You’re hurting me!’ at the top of her lungs.  This went on for half an hour.  No one tried to help, they just stared.”

“Adira’s high-functioning: she walks and talks and can do all kinds of things that other kids with special needs can’t, so when we’re in public, people are very confused about her behavior,” explains Dena.  “I was so angry and embarrassed afterwards, I couldn’t even speak.”

Shannon McKie, a behavior analyst, frequently encounters rude behavior when she does community-based therapy with clients.

“I’ve seen numerous situations where a parent starts panicking because their child is having a meltdown in the Thomas the Train section at Target.  The reason we’re there is to help them walk through a store without having to buy a toy; parents have to practice these scenarios in order to get better at them,” explains McKie.

She suggests calling the store manager ahead of time so employees get a heads-up in case tantrums occur.  Another useful tool?  A whiteboard saying, ‘I have autism; please excuse me right now; I’m working on accepting the word no.’

“When parents get glares and stares, saying ‘We’re fine’ or giving a thumbs-up signal helps; otherwise, it’s very difficult.  Unfortunately, our society is very judgey; people don’t understand what that parent is going through.  I take this kind of thing extra-personally, because my older brother has very severe disabilities and autism, and growing up, we dealt with this often.”

Parents may feel compelled to reveal their child’s condition in order to avoid sidelong glances in parks or restaurants. Sometimes, a short explanation might help defuse sticky situations, notes McKie.

“If you’re going to say something, be informative about it: ‘My daughter has sensory processing disorder; I’m sorry this is making you uncomfortable. We’re working on this challenging behavior currently; thanks for understanding’,” she suggests. “Hopefully, you’re informing them, so that the next time they see a similar situation, they won’t stare.”
Most importantly, adds McKie, push through other people’s reactions and continue to advocate for your child.

“As a parent, you typically just stop taking your kid out, because you get so embarrassed and it’s so overwhelming.  But that’s the exact opposite of what I want them to do. The way that we make the situation better is with practice.”

Parents can help avoid their kids making themselves the center of attention in the first place with advanced preparation.  If your child is sensitive to noise and headed to a restaurant or party, plan for short breaks where you can get your kid away from the action to regroup, advises Anna Harper, a physical therapist.  Empower your child ahead of time by clearly explaining where you’ll be, what might happen and how you’ll help if necessary.

“Parents may need to shorten the length of playdates or visits to the mall,” she says.  “Pick what’s manageable for them: ‘We’re going to the grocery store, but we’re only getting three items’.  That decreases anxiety and possibly the tantrums.  Another useful thing to try with younger ones is to say, ‘If you’re getting upset, you can squeeze my hand to let me know.’”

McKie suggests setting clear expectations and rules for behavior, either with pictures, verbal explanations or social narratives.

“Lay it out before you get there so that you’re setting them up for success, not failure,” she says.

Several years ago, Mastin’s friend gave her a piece of advice that changed her entire outlook.

“Because Chloe doesn't understand boundaries, if someone has a soft shirt, she’ll start petting them, so I found myself constantly apologizing for her, until my friend said, ‘Stop apologizing.’  That was so empowering to me, and I think it helps protect the dignity of my kids,” she says. “If I feel like explaining because it’ll be a good learning opportunity, I will, but for the most part, I’ve stopped explaining or apologizing, unless people ask.”


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