While some disabilities demand recognition via a wheelchair, hearing aid, or portable oxygen tank, others are more subtle, but that doesn’t make them any less real. Known as invisible disabilities, they affect 96 percent of people who have a chronic medical condition, according to one estimate. Caring for a child with any kind of disability presents extra challenges. For the parents of children with invisible disabilities, those challenges often include the perceptions of their communities–including friends, family, neighbors, and teachers–perceptions that are uninformed at best and hostile at worst.
I talked to parents of kids with invisible disabilities including Autism Spectrum Disorder (ASD), Avoidant and Resistive Food Intake Disorder (ARFID), hemophilia, and many others, to find out what they wish more people understood about their experiences.
Sensory processing issues are NOT discipline issues
According to the American Occupational Therapy Association, sensory processing affects virtually all aspects of a child’s daily life, including motor coordination, school performance, and relationships. A child with sensory processing disorder could have 20/20 vision and perfect hearing, but when he is in a crowded mall, his brain is not able to manage all of the auditory and visual information he’s receiving through his eyes and ears. While each kid reacts differently to overstimulation, some will scream or become physically aggressive.
What may look like defiance is just a kid doing his best to manage a stressful environment. The assumption that a lack of discipline indicates a failure by the parent is totally without merit. Jaime has a five-year-old son with level-one, high-functioning ASD. She says, “Discipline will not prevent him from being overwhelmed by his environment.” Lainie Gutterman, the mom of a seven-year-old boy with ASD, says that when he is having a meltdown, “staring, pointing and offering your two cents is NOT helping the situation and will most likely cause my son or myself to feel worse and [his] behaviors to escalate.”
Similarly, Jennifer Lynn, whose son has ADHD, wishes people understood she’s not being rude or indulging her children when she leaves a party abruptly. “It’s just that we see the warning signs and are trying to help our kiddo avoid a meltdown.” She says events like family gatherings or vacations, which are fun for most people, “are stressful for our family because it’s just too much of everything.”
A little compassion goes a long way
Regardless of their child’s diagnosis, virtually every parent I talked to described the pain of receiving judgment instead of compassion. Sarah Cottrell, whose son has hemophilia, is tired of challenging people’s assumptions about his diagnosis. She says, “He doesn’t have AIDS, and hemophilia isn’t caused by incest. Enough with the wild theories because we need compassion and empathy for the unseen pain issues and unending fear and anxiety over covering his insurance.”
Most parents I talked to, particularly those of kids with sensory processing disorders, described organizing their days around their kids’ strict routines. Every parent understands how easily the best-laid plans for meals, naps, and bedtimes can implode. What many parents don’t understand is how much higher the stakes are when your child with special needs depends on predictability for a sense of safety. Says Lisa Rosen, who says she must wake up 90 minutes before her kids in order to prepare for the non-stop mental and physical energy her son requires, “When adults look at my child, they see a happy kid, but I know that if ONE thing is off in our routine, I’m dealing with Hiroshima.” Her three-year-old son, Ezra, has sensory processing disorder and is speech delayed. According to Rosen, something as seemingly minor as the smell of a classmate’s detergent could cause him to meltdown to the point where she must carry him out of the classroom. She described her family’s disappointing lack of understanding when she could not attend the funeral of a family member due to a lack of childcare coupled with Ezra’s regimented schedule and complex needs. “Who knew compassion was so difficult to come by?” she asks.
The predictability some kids require doesn’t just extend to schedules and environments, but also to food. Brianna Bell and Jennifer Gregory each have a child with sensory processing disorder that makes them intolerant of many foods. Because of this, Bell hates sharing meals with friends. She says, “There is so much pressure from others for her to eat this and that and not be so picky. I feel rude bringing my own food, but she starves if I don’t. And people just don’t understand and assume she’s spoiled.” Gregory asserts that her family doesn’t often eat together, often serves alternative meals, and that they allow screens at the table, and that works for them. She wants people to understand that, for her family, “mealtime is chock full of stress and anxiety, and the goal is to get food into our son’s belly because he doesn’t eat enough. If an iPad distracts him from smells and texture and allows him to eat more, so be it.”
Parents described not only a shortage of kindness from other parents, but also from other children. Lisa Beach recalled her son’s adolescent years as being particularly isolating. He is now 20 and has Asperger’s. Beach’s advice to parents is simple: “Teach [your] kids to reach out and include rather than label and judge.”
Just because you can’t see it doesn’t mean it’s not there
When a parent is struggling to find a diagnosis, pay for therapies, or just get through the day with a kid who has an invisible disability, it is not helpful to insist nothing’s wrong because their kid looks so “normal” or that their IQ is so high. What may be intended as a compliment may come as a slap in the face to the parent who has committed precious time, energy, and money to her child’s disability.
Samantha Taylor’s 13-year-old has high functioning autism, generalized anxiety disorder, and an eating disorder, while her 10-year-old has dysgraphia and anxiety. Although Taylor is open with her friends and family about her kids’ diagnoses, because they appear “normal,” she says people are often shocked when her kids say something inappropriate or react in a way that is out of proportion to the situation. Says Taylor, “While it might look to everyone in our lives that we are holding it all together, I worry about my boys every single day. I wake up thinking about what I can do to make their day easier, and go to bed wondering if I did enough.” In search of a supportive community, Taylor ended up creating a thriving Facebook group for moms of kids with special needs.
One mother who prefers anonymity describes feeling frustrated when people judge her for coming to her son’s aid. He is in his early 20s and has high-functioning Asperger’s Syndrome. While she may appear overprotective, that is not the case. She says, “High-functioning individuals are acutely aware that they are different and sometimes have self-confidence issues. Shaming them for needing help is not productive and can contribute to anxiety and depression. Thoughtless comments can sometimes ‘undo’ progress that has been made.”
You’re an advocate
Parents of kids with invisible disabilities are not just responsible for feeding, clothing, loving, disciplining, and teaching their kids. They must also advocate for their kids in a system that does not always have their best interests at heart.
One mom, who preferred to remain anonymous, described the challenge of having a 12-year-old son who has ADHD and a learning disability. She described his teachers’ low expectations, recalling an Individualized Education Program (IEP) meeting where a teacher was clearly impressed with her son’s C, “and how great that was ‘for a kid on an IEP.’” To compensate for his teachers’ low expectations, she says she always reminds her son “[he] is smart and his IQ reflects that. There is no reason he shouldn’t be able to get an A… if he is provided with the right services.” She also described a general lack of understanding of her son’s ADHD diagnosis among his teachers, which she feels causes them to set unreasonably high expectations of him in other areas, such as his ability to get organized or follow a schedule.
Delaina Baker, whose son is dyslexic and has auditory processing disorder, described similar struggles with her son’s school. She says she wishes teachers were more accommodating of his IEP. She says, “It is my right to fight for my child, and if you challenge my knowledge of his disability, I can assure you, I’ll have a spreadsheet, charts, and back-up data to prove it.” She says she is grateful to have found an ally in her son’s Exceptional Student Education (ESE) coordinator, whom she feels is her son’s only advocate beside herself.
Parenting is hard enough without adding other people’s assumptions to the equation. Parents of kids with invisible disabilities just want the world to know, it’s only okay to assume one thing: They are doing the best they can.