If you saw Paisley Graham being pushed in her stroller at the park, you might notice the 2-year-old’s happy grin or smile at her adorable giggle. What you wouldn’t see are the brain surgery scars beneath her hair, the feeding tube under her clothes or the leg braces she’ll wear as she learns to walk.
Paisley has spastic diplegia cerebral palsy and shunted hydrocephalus — water on the brain that drains with a shunt. She’s also, at this point in her life, a child whose special needs are not always obvious to others.
“Right now, she looks like any other toddler while she sits in her stroller,” says mom Susan Graham, of Noblesville. “What others don’t see is that our stroller contains her special food, feeding pump and acts as her wheelchair. We’re always told to leave her stroller in stroller parking, and we always have to convince the person that it’s actually a wheelchair.”
Invisible disabilities, as they’re commonly known, include everything from medical conditions like Paisley’s, to high-functioning autism and Asperger’s, food allergies, learning differences and mental health issues. And while having special needs that are not as noticeable gives those individuals more options about how and when they want to share information about their condition, it can also lead to people making incorrect assumptions about them.
“Invisible disabilities can be even more challenging because people are prone to make judgements about what a child is capable of just based on what they see,” says Jennifer Akers, Project Director of the family-to-family health information center at Family Voices Indiana. “Every child is capable, but some need more supports, and it’s important to recognize that.”
Communicating your child’s needs
To best explain your child’s needs when they are not obvious, Akers suggests parents learn all they can about their child’s challenges and the supports that are most useful in different situations. It can also be helpful to practice clarifying what your child needs when you aren’t in the middle of a new situation. “Try calmly explaining these things when you’re not stressed, knowing that you won’t be as calm when you’re having a bad day. When you’re in the middle of a meltdown at the grocery store is not when you’re going to be at your best!” Akers says. “You need to lay the groundwork on how to explain these things so that they’re easily understood and embraced.”
Ashley Grimes, of Greenfield, has been there. Her 8-year-old daughter, Addy, has autism, food allergies and tachycardia, an abnormally rapid heart rate. Addy sometimes gets overwhelmed in crowded, noisy places which can lead to meltdowns and judgements from onlookers. “People often assume she’s just being a brat or not minding her parents, and they’ve made some very offensive comments over the years,” Grimes recalls. “It used to embarrass me and my husband, and it made us want to stay home, but we just decided not to pay attention to the looks or comments from others.”
Helping your child advocate for themselves
Ultimately, it will be your child’s responsibility to advocate for him or herself when they are older, and it’s never too early to help them learn to articulate what they need to succeed, Akers says.
“I think it can be especially powerful when a child is able to spell out their own needs and challenges,” says Akers. “If they’re able to learn to say, ‘If you let me have a scribe because I have trouble writing, I can be successful in this assignment,’ or ‘I need a quiet place to retreat to when I get overwhelmed,’ it will help them better communicate what they need to be successful throughout their lives.”
Show compassion for all kids
As for those of us who assume we’d be able to tell if a child has special needs or not, we should consider that the boy having a meltdown at the museum or the girl being pushed in a stroller past the stroller parking area may in fact have an invisible disability. Aker’s answer to addressing these situations is simple – always choose compassion. “If we were all just accepting of other people’s needs, no one would be questioning these things. But we’re not there yet,” she says. “We have the opportunity now with social media to educate others about the positives of differences and to really raise the visibility of invisible disabilities.”