My Biggest Hero Rides The Short Bus

I used to reference riding the short bus to make fun of myself, or tease others, or to express frustration with their choices and actions. It’s not the only ableist insensitivity I’m ashamed of in my life.

My child rides a short bus. The strongest people in my life ride a short bus. They ride it every day, into a world made for everyone but them. This environment doesn’t understand their tubes, prepare roads for their amazing minds, accommodate their wheels and equipment and seizures.

They push into a space meticulously designed for typically abled people, and keep coming back, hungry for the chance, working for growth, cherishing the community.

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Suddenly, my insensitivity isn’t funny any more. Nobody works harder than my Lulu. She celebrates school. She stomps into speech therapy seven times a week. She pushes her tongue around unfamiliar sounds, and mashes words together in ingenious ways, just to make her little soul known. She gets frustrated when all her effort still can’t make her words work.

She spent her first year and a half trying to tell us things weren’t ok. She screamed nearly constantly. She got sick frequently. Despite being in the doctor’s office every 1-2 weeks, and being diagnosed as failure to thrive, her physicians never got beyond trying to calm her frightened parents.

So, smart girl stopped eating one day. It forced us to take her to the hospital. The initial admission for dehydration turned into a two week stay – including a surgery to put in her feeding tube. Months later, we got the results of her genetic testing.

She’s missing 9 genes, and it turns out, that has an impact on how she develops. We don’t have the benefit of knowing exactly how, though, because she was the first case her geneticist is aware of missing this exact segment of DNA code. Only three of the genes are even studied and known for how they work in the body and development.

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Every single step of her life takes courage, ingenuity, luck, and hope. This society puts all its eggs in the basket of intelligence and looks. So, as a parent, learning that Lulu’s intelligence may not look like what I was taught to value by society shook me. Learning she needed a feeding tube implanted in her stomach shook me. Learning she would ride the little bus to school shook me. Learning that my mothering would never be enough without medical intervention and therapeutic help to keep her alive and thriving shook me.

But, we found the courage as a family to face these things, and each new instance of submitting to her reality brings us so much hope and relief. No one works harder in our life to make a good life than Lulu. Aside from being very small, it’s not easy to see her fight and difficulties. But she has been through so much. And she keeps marching cheerfully forward, hungry to learn and grow and have a ton of fun.

So, if you say the “r” word around me, or use the term “special” to suggest someone is not adding up to your expectations, or refer to the short bus as the only transportation fit for someone who did something really dumb – expect a firm, gentle pushback.

Not in anger – unless you mean to insult the lives and souls of dear humans. But, in recognition that you haven’t maybe met a person whose whole realm of possibilities is so different, or seems so much smaller, but who none-the-less lives a rich, perspective-changing life.

If you mimic the involuntary motions of persons as a way to minimize any human, I will ask you to stop.

And, don’t say the r word. Just… don’t. Not to describe situations you don’t like, not to describe people you don’t like, not as a description for anything.

This isn’t me being politically correct – it’s being humanly correct. It’s tying the slights and arrogance and bias of the typically abled world to the REAL HUMANS who live daily under that weight.

I’m thankful for that little bus my tiny human enthusiastically greets every day. She falls asleep in the 10 minute ride home – exhausted by her work – and then waves at it until she can no longer see it. It is special, in every exquisite meaning of the word.

 

 

IMG_0896Jessica Zan is a full-time wife, mom, and nurse, sometimes writer, and occasional speaker. She’s busy raising two girls who are way smarter than her. One of those girls is missing nine genes.

 

Follow Jessica on IG: @cheshazan

Follow Jessica on Twitter: @jzanrn

3 Replies to “My Biggest Hero Rides The Short Bus”

  1. I agree with everything in this except for her demand that the “r” word never be used.
    Can it be used inappropriately? Yes. Can you show me any word in the English language that it is utterly impossible to use inappropriately?
    The “r” word she is referring to literally has exactly the same definition as “delayed”. So unless you are going to outlaw every word that has that meaning, you need a stronger argument for making it taboo than “it’s the tone people use it in”. In the first place, the burden is on you to prove that it is never and has never been used by any person in any other tone. If it has, and that is truly your objection, then it should not be forbidden in those cases. Then there’s the plain and simple fact that any synonym you replace it with can be said in the same tone, in the same contexts. In fact, if someone is likely to misuse the “r” word, they are just as likely to misuse “delayed” or “challenged” or “non-typical”.
    By making the term taboo rather than insisting that it be used respectfully, you are basically saying, “You’re right to treat that as a struggle to be ashamed of. So we’ll start calling it something else when we absolutely must speak of it. Then when you speak that term in degrading tones, we will appease you again and find yet another term and so on and so on.”
    Before you stone me for “not understanding how it feels”, I have two sons with developmental disabilities. The first had an old-school doctor who diagnosed him using the “r” word. It knocked the air out of me–not because of the way it was pronounced, but because of the diagnosis. I knew he was severely delayed. Seeing it on paper though, as a diagnosis, was a completely different story. I don’t think either of their disabilities would be easier to deal with if a new word was used. Delays are delays whether you use the latin based word for it or a word with different linguistic roots.

    Like

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