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22 Things Parents of Kids With Invisible Disabilities Want You to Know

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Some disabilities are ‘invisible.” It means there may be no obvious or immediate physical characteristic that accompanies the condition. This is the case for many neurological differences, like ADHD, sensory processing disorder, most mental health issues, and autism, among others. Some people have chronic or rare conditions that may fall under “invisible” disabilities, too.

For many kids, having an invisible disability means they are often misunderstood and considered to be “bad kids” or “lazy.” They need support and understanding.

For their parents, it means they are often seen as “bad parents” who fail to discipline their children or who let the kids get away with “inappropriate behaviors.” Parents need support and understanding. too.

We reached out to parents in our community and asked them, “What is one thing you wish people knew or understood about your child with invisible disabilities?

These were their responses:

1. “Please don’t judge my parenting skills. Sometimes [my son] needs his tablet when we are out in public to communicate or avoid a major meltdown from sensory overload. It’s not because I’m being a ‘lazy mom.’ I’m being a mom who knows how to parent her child with certain needs.” — Melissa O.

2. “Just because he ‘looks OK’ doesn’t mean he doesn’t struggle.” — Audi M.

3. “My child is autistic, and I wish people wouldn’t stare when he is having a meltdown or he needs to stim. He can’t help how his brain is wired or what it tells him.” — Lindicia H.

4. “Anxiety is real in children, too. You saying it’s just a behavior is saying that a child can’t feel.” — Christine M.

5. “Even with an invisible disability [my son is] still a child with feelings. Bullying him, being mean to him, not including him all hurt him the same as any other child. Instead of asking if he is slow or [calling him] the R-word, feel free to ask me about his disability and I will be more than happy to explain it to you.” — Laura C.

6. “[My son] is not lazy. He is not a slacker. In fact, he works harder in one week than most kids do in a month. He is not deliberately messy or clumsy, and screaming at him to pay attention is actually going to make things worse. He’s an amazing kid whose brain is just wired differently.” — Tami S.

7. “My son needs a buggy even though he looks ‘healthy.’ He gets bullied in public by children and adults alike calling him lazy or naughty. I wish people would just ask why he needs it and I would explain! Just because it isn’t visible doesn’t mean it doesn’t exist.” — Vicky W.

8. “My daughter’s behavior isn’t her acting out, it’s her invisible disability, it’s her lack of knowing how to control her body, it’s her body being in overload form normal stuff and she can’t manage it… Sensory stuff is hard to understand and hard to explain!” — Selena P.

9. “The need to support my child far outweighs the need to discipline my child.” — Claire P.

10. “[My child has] autism and possibly EDS. I wish [people] knew he understands when they’re talking negatively about him and it hurts his feelings just as much as if it were [them].” — Jennah A.

11. “Please know [my child] is nonverbal, but she comprehends what’s said.” — Sharon P.

12. “My child is a 14-year-old tall boy with ASD, anxiety and socialization difficulties. I’ve had grown men step up to my son. I really hope people will one day be informed as to the signs of invisible disabilities. My child is perfectly imperfect, just like me.” — Silvia F.

13. “As much as I want to educate the public at large about my son’s autism, depending on my immediate situation, I may not be able to say more than, ‘my son has autism’ to those who look him in a confused manner. Believe me, I want to tell you more about him because he really is smart, and affectionate, and funny… I want to tell you, random person staring at my son’s flapping hands, that there are certain things that trigger such actions from him. But it is an ever-growing list. And it can lead to a longer conversation about his coping mechanisms and his food aversions and his unique methods of nonverbal communication.” — Melina M.

14. “Adults, please don’t stare at [my daughter] judgmentally. She may look like an 8-year-old in a large umbrella stroller, but it’s actually a wheelchair. Don’t stare, don’t judge, don’t make any comment, jokingly or not. ‘You should be pushing your mom!’ will have me reply, ‘It’s a wheelchair’ with a smile. I have no trouble embarrassing you in public. Kids, on the other hand, treat her like another kid. They’re great.” — Kathy B.

15. “Just because [my daughter] lacks communication skills doesn’t mean she can’t understand you. Having a disability doesn’t automatically make you unintelligent.” — Vanessa C.

16. “My lil dude wants to be treated like everyone else! If he says he can do it, then please let him! He might be small but he is a big boy!” — Amy E.

17. “Staring and pointing fingers doesn’t help the situation. It’s hurtful.” — Candy D.

18. “My daughter is gifted. Yes, she still needs one-on-one help. She doesn’t learn the same as what schools expect her to test at.” — Katie S.

19. “What you see is a ‘lazy’ toddler and an overreacting mother going to another hospital appointment. What I see is complete and utter determination, beautiful stubbornness, and a toddler who’s fought more battles and beaten more odds than most people ever will.
Your view is shadowed, and mine is technicolor.” — Amanda G.

20. “‘He looks so normal and seems to be happy, so why does he get sick so much and your always in the hospital?’ My response, ‘Clear your schedule as this will take a while to explain.’ Then I go into everything people can’t see like, he is antibody deficient, has permanent lung damage from aspirating, hypoxia, can’t maintain O2, has dysphagia, etc, etc. Then I have to re-explain in laymen terms because they are looking at me completely confused!” — Erica E.

21. “Don’t judge based on the short snapshot you have of my child, and above all, be kind.” — Sheridan P.

22. “My son looks healthy on the outside, but what people can’t see is what his body is like on the inside. His organs don’t work properly, everyday tasks are painful and exhausting for him and it takes a lot of medications just to keep him on his feet. So when I cancel plans or refuse to book too much into one weekend, it’s not because I just can’t be bothered or I’m being difficult. It’s because I am doing the best I can to keep my son as healthy as he can be considering his circumstances.” — Lexi N.

Do you have a child with invisible disabilities? What is one thing you wish people knew or understood about your child? Let us know in the comments.

Getty image Paul Bradbury

Originally published: November 20, 2018
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