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, these affect 96 percent of people who have a chronic medical condition according to one estimate. Caring for a child with any disability presents extra challenges. For the parents of kids with invisible disabilities, those challenges often include the misperceptions of their communities – including friends, family, neighbors, and teachers – that are uninformed at best and hostile at worst.
I talked to moms 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. Here are some of them.
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's 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. Here are few of their stories.
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 agrees. She says when her son 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
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 everything.”
Regardless of their child’s diagnosis, virtually every mom 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 disorder, 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 special-needs child depends on predictability for a sense of safety.
Lisa Rosen, who wakes up 90 minutes before her kids in order to prepare for the non-stop mental and physical energy her son requires, says, “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 son Ezra, age three, 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 melt down to the point where she must carry him out of the classroom – regardless of whether she's carrying her 15-month-old baby as well. She describes her family’s disappointing absence of understanding when she couldn't 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 frequently eats separately. She serves alternative meals and allows screens at the table, and this 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
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 her 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 ten-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 20’s and has high functioning Asperger 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.”
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 that “
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. Says Baker, “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 that it’s only okay to assume one thing: They and their kids are doing the best they can.
It takes a village!
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