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Sonoma Family Life Magazine

Not All Disabilities Are Visible

By Pam Moore

While some disabilities demand recognition via a wheelchair, hearing aid, or portable oxygen tank, others—invisible disabilities—are more subtle. I talked to parents of kids with invisible disabilities to find out what they wish more people understood about their experiences.

Sensory processing issues are NOT discipline issues. 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. 

Jaime has a five-year-old son with high functioning Autism Spectrum Disorder (ASD). She says, “discipline will not prevent him from being overwhelmed by his environment.” Says Lainie Gutterman, the mom of a seven-year-old boy with ASD, 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.”

A little compassion goes a long way. 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.”

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 special-needs child 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 son Ezra, age three, has sensory processing disorder and is speech delayed. 

Just because you can’t see it doesn’t mean it’s not there. It is not helpful to insist nothing’s wrong because a kid looks so “normal” or has a high IQ. What may be intended as a compliment may come as a slap in the face to a struggling parent.

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 says 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.” In search of a supportive community, Taylor ended up creating a thriving Facebook group for moms of kids with special needs.

They’re advocates. Parents of kids with invisible disabilities must 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 teachers’ lack of understanding of her son’s ADHD, 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.

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 and their kids are doing the best they can. 

Learn more about Pam Moore’s work at