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More Than Meets the Eye: Parenting a Child with an “Invisible” Disability

Do you know what disability “looks like?” I once thought I did, too. I mean, if you see someone using a wheelchair or walker or wearing leg braces, they may have a disability. If you see someone using sign language or wearing hearing aids or sporting cochlear implant transmitters behind their ears, they probably have a disability. If you see someone with certain facial or body characteristics, you may recognize a disability. If you see someone with a feeding tube or a tracheostomy, they may very well have a disability.

But what about the child who is having the mother of all tantrums in the Target aisle? He doesn’t have a disability; he’s just undisciplined. And the child who isn’t wearing socks in January in Iowa? That has nothing to do with a disability – what kind of parents must she have? And then there’s the child who only eats Kraft Singles Deluxe Slices, Cool Ranch Doritos, and mini yogurt pretzels. Disability-schmisability. Don’t his parents know that isn’t balanced nutrition?

parenting child invisible disability

I know you realize I say these things tongue-in-cheek and that I’m going somewhere with this.

Not all disabilities are visible to the naked eye.

Your child, for all intents and purposes, may look completely “normal.” And yet you’re dealing with challenge after challenge. Every. Single. Day.

I have shared the story of my son’s early arrival at 25 weeks gestation and a little bit about our NICU journey. He is now almost 7, and no one really prepared me for the ways in which his prematurity would continue to impact him as he got older. He’s truly delightful…most of the time. He’s smart and funny and inquisitive and outgoing and articulate. His behavior is (mostly) OK. He looks like any normal seven-year-old boy in first grade. Except he’s really not. His “invisible” diagnoses include sensory processing disorder, mild conductive hearing loss, attention deficit hyperactivity disorder, and generalized anxiety.

We knew when he was still a baby that he had some sensory issues. He wouldn’t walk on grass until after he was three years old, whether he was wearing shoes or not. He has always been limited on the foods he would eat because of texture issues. (Yes, kid, fruits are often “slippily.”) His startle reflex from infancy didn’t go away…and really still hasn’t. In spite of these sensory issues, we managed quite well and provided him with physical therapy, occupational therapy, and feeding therapy, sensory bins, proprioceptive activities, and time at the trampoline park.

But no one can see his sensory issues.

Our extended family might not know that if he can’t use foam soap, he’ll refuse to wash his hands at all. Our friends might not know that he’ll flat out refuse to wear shoes unless the socks are perfectly smoothed AND the shoes are the exact perfect tightness. The babysitter might not know why he is in constant motion from the moment he awakes until he finally gives up long after his bedtime.

I would guess that many (most?) of you haven’t heard of Sensory Processing Disorder (SPD), or if you have, you’re not really sure what it is. Well, it’s the reason it may take my son an hour and a half to fall asleep at bedtime, and even then, it’s only with me by his side. It’s the reason you may hear screaming from a public bathroom because they have automatic flush toilets. And it’s the reason he may run around crazily on the playground climbing higher, spinning faster, and swinging to greater heights than any of the other kids.

A person with SPD has difficulty processing and organizing sensory input. Some people are sensory seekers and require more stimulation to be able to register a touch, smell, sound, etc. Some may be sensory avoiders and have heightened responses to sound, pain, texture, etc. Interestingly, people can be sensory seekers in some aspects and sensory avoiders in other. In my son’s case, his early arrival meant that his senses didn’t have time in the womb to fully integrate. His neurologic system didn’t have a chance to completely develop before he was born, and he is left with a bunch of sensory issues. Occupational therapy and various home activities and exercises help with his SPD, but we still deal with some “crazy” behaviors at times.

We were recently handed another invisible diagnosis: ADHD.

For years, people have wondered why we couldn’t keep our son still, why we would let him wander around a restaurant, why he would always run away from us in public places, and why we didn’t try harder to get him to listen. Well, folks, there’s a reason for all of this – ADHD.

We are really just figuring out the best ways for us to support our son. While it was kind of a blow to get the diagnosis of attention deficit hyperactivity disorder, it was WAY more of a relief than anything. It explains a lot, and we now can make sure we move in a direction to best help him. We can re-direct instead of punish. Instead of implementing time out, we can encourage him. We can organize our daily schedule to support what he needs. Our team for his ADHD includes us, his psychologist, his psychiatrist, his occupational therapist, his teacher, his school counselor, and his school instructional coach. If that sounds like a lot, it is!

Beyond SPD and ADHD, there are so many other invisible disabilities and invisible health concerns that kids (and adults!) may have. Global developmental delay (GDD), epilepsy, oppositional defiant disorder (ODD), severe food allergies, dyslexia/dysgraphia/dysnomia/dyscalculia, autism, fetal alcohol syndrome, anxiety, reactive attachment disorder (RAD), intellectual disability (ID), diabetes, post-traumatic stress disorder (PTSD), and many more I know I’ve missed. Each of these things comes with its own set of challenges, for the parents as well as the child.

Am I looking for your sympathy? Nope. This is just our reality.

Do I want special treatment? No, I just want my son to be able to learn in an environment suited to his needs. Do I want pity? Nope. My son is pretty darn amazing; there’s no need to feel sorry for us.

Do I want understanding? You bet. I don’t expect the people in my life to be experts about my son’s challenges; I just hope for some degree of understanding. Do I want a little grace? Yep, especially in situations where he’s struggling particularly hard. Instead of judging that mom in Target, realize that her daughter might have an underlying issue causing her meltdown and give her a smile of support. Instead of wondering why the heck someone would let their son only wear a hat and mittens and no winter coat, realize that even getting those on him may have been a battle royale. And instead of offering advice about how/what/where/when you get your child to eat, just listen to your mom friend and acknowledge her struggle.

While it’s sometimes tough parenting a child with an invisible disability, it’s also nice at times to be able to blend in and feel “normal.” But when our day looks anything but normal, I just like to be given a little latitude while we work through the behavior du jour. And please know that your supportive smile can make my day.


 

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2 Responses to More Than Meets the Eye: Parenting a Child with an “Invisible” Disability

  1. Tiffany September 25, 2017 at 7:23 pm #

    Thank you…I love this! Our 7.5 daughter is on the Autism spectrum and a 2nd grader. We have taken her to countless therapies, both OT and speech. I can totally relate to a child not putting their bare feet on the grass, it’s obviously a texture thing with her. Food is exactly the same way partially meat. We have been working close with UI, & our Dr’s office trying to get more of her figured out. We went through a phase where if something was to high she wouldn’t climb it like other kid’s her age. Her Dad and I have taken her to playgrounds around our town, do she can experience being a kid with one if not both of us close by. We now are dealing with more outbursts at home & when she is out in public with just Mom & Dad not real sure if it’s a competition with her baby sister or not. She used to hate getting dirty too shaving cream,plays on, sand, you name it. We definitely had sensory processing disorder going on.
    So between her help through the special education program at school with 3 different subjects, taking her to OT & speech every week in Davenport, & her Dad & I trying to get her want help that we can while still allowing both kid’s to do a little extra curricular activities (Dance for now). I am most definitely not taking away my child’s childhood because we have to fight a little harder to make our days run smooth because of her invisible disability. Thank goodness for our support system ( school, therapies, families, & outselvesl When they say it takes a village…no. crap…it really does especially with a special needs child.

    • Sara
      Sara September 27, 2017 at 7:21 pm #

      Thanks, Tiffany! It sounds like your daughter is so fortunate to have you as her advocate! That in itself can be exhausting. I feel like it helps to have people in my life who “get it,” whether in real life or online. Do you have other parents with special needs kiddos who you can lean on, talk with, bounce ideas off, etc.? If not, I can help point you in the direction of some options!

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