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4 Things I've Learned From the Parent Community of Kids With Disabilities

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I have just finished riding a pretty tubular wave.

A Medicaid approval, my very first individualized education program (IEP) experience, World Down Syndrome Day and a respite refuge application came crashing in and we rode it out without wobbling. We are four years in on this journey and surfboards do not capsize as easily. My husband and I handled it all like bosses and we even learned some things along the way.

Here is what I know for sure:

1. Parents of kiddos with disabilities are fierce fighters and unabashedly so.

Never have I ever worn a t-shirt to a concert I was attending, but you can bet your sweet self I wore my, “Advocate Like A Mother” shirt to my son’s IEP meeting. We are proud parents who aren’t trying to pick a fight. But we are passionate protectors of the ones we love and we know firsthand how hard they need our safeguarding.

2. Parents of kiddos with disabilities are some of the kindest people you will ever meet.

Although the grizzly is within us, much like the good Dr. Bruce Banner, we wish to remain calm and unstirred. We need a lot of energy, we do not wish to waste a single whisper of it. And we empathize, my goodness how we empathize. We fill doctor offices with knowing smiles, we meet moms in grocery stores who have screaming children and we authentically console. We understand tired parents, piles of paperwork, bad days and friends who are unable to keep commitments. We only stare if we want to offer up a smile, only judge if we see cruelty, and even then we don’t hold grudges.

3. We know people stare at us.

What seems like forever ago, we too did not know about disability. We curiously watched others trying to comprehend a world so foreign to us. We understand that’s what people are doing. We know there is rarely any malice and we get it. We also hear our child being loud in an otherwise quiet restaurant. We are quite aware that he or she is experiencing a meltdown. We know we look different. Do not be embarrassed for looking a bit too long as you try to get a peek into our reality. Also, I can’t speak for all parents, but I kind of like it. You know the popular Dr. Seuss phrase, “Why fit in when you were born to stand out?” This resonates. I never felt like conforming. In fact, I rejected it. But that rebellious childhood story is a different tale for another time. In any case, I enjoy changing perceptions just by being seen. And while I realize that sometimes when people see our family it may invoke pity or sadness, some others  may observe us cheers-ing our drinks or smiling wildly and think, “What do they know that we don’t know?” Maybe their peek inside our reality won’t seem foreign or scary or sad, but more like some beautiful, whimsical secret.

4. We are aware that people with disabilities are the greatest minority group, yet they are the least supported and most under utilized. 

According to the World Bank, 15 percent of the world’s population is living with a disability, and persons with disabilities are more likely to experience poverty. So when we see possible funding cuts to services, our parent community gets fired up. We feel slighted. We feel less than. And most importantly, we feel sad. Because it is everybody who loses here. The parent community creates a narrative of overcoming obstacles, of perseverance, of unconditional love and support. It inspires. It is in fact that whimsical secret. We shine a flashlight in the dark because in the dark, without a flashlight, well, that’s how fear happens.

You will not see those of us who love the disability community rioting, or retaliating  or even fussing with a vengeance. We will kindly remind you of our loved one’s worth by holding hands and wearing t-shirts. We will talk to our congressmen and sign petitions. We will share stories and pick up the slack created by our politicians… and we will band together in hoping that nice guys do not finish last!

Originally published: April 11, 2019
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