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Tag Archives: disability

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

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Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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Life with Maura, episode #827

10 Nov

Maura is not the neatest of teens.

Somewhere, my sister is going “Well THAT’S an understatement.”

My sister has spent time with Maura obviously.

But it’s true. Maura and neatness do not go hand in hand. Maura has always been a messy kid, and now she’s a messy teen. We spend too much time wading into her room to shovel it out and tame it back into submission and a semblance of organization that will last two days tops. She can destroy a room in five minutes, leaving it strewn with My Little Ponies and costume bits.

Luckily, we are not Type A people. We don’t freak out at the wake of destruction she leaves. We just sigh and carry on.

Sometimes, I don’t discourage it.

Case in point – a package came to the house, and the contents were packed in lovely pink packing peanuts. Boxes like these are pure joy for Maura, and free sensory play. The box came over two weeks ago and amazingly, it wasn’t until yesterday that it kersploded everywhere.

 

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[image description – a lovely mutli-shades of blue area rug coated in pink packing peanuts, a box of pink peanuts sitting next to it]

I’m guessing it tipped over while Maura’s doll was swimming through the peanuts. Maura looked at the mess and pointed to it. I could hear the implied “Can you clean it up?” I pulled the age-old “You clean it up.” And she did. Mostly. But enough that I could vacuum up the rest, so that was a win.

Maura has also rediscovered apples. She’ll go through phases with some foods, and apples are one of them. Or maybe, I’m the one who goes through the phase where I forget how she handles apples and buy bunches only to end up with a lot of this happening…

 

 

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[image description – an aqua blue Fiesta plate with three apples, one partially eaten, one with one bite taken out of it, one with two bites taken out of it]

Apples are great. Apples taste good. Apples smell good…until they rot under your couch, or behind the piano, or where ever Maura left the partially eaten apple. Those apples in the picture? Weren’t found like that on a plate. The plate (hers) was left on the coffee table. One apple – the mostly eaten one – was found on the couch. The other two were in her Halloween pumpkin, along with two uneaten apples.

I put the uneaten apples back in the fridge. So if Maura wants one, she can have it. Which means I may be finding a half-eaten apple in my shoe tomorrow.

Should I deny her apples, or free sensory play, because it makes a mess?

Nope.

Should I train my dog to find half-eaten apples and throw them away for me?

Probably.

 

 

 

Everyday Caregiving

6 Nov

It’s the things we do by rote, things that have become second nature, things we don’t even realize we do until someone looks at us with one eyebrow raised and a “Well, that’s weird” expression. Things we do for a teenager who should have been doing these things for herself years ago. Things we avoid in order to keep the peace.

Those things have become our norm.

I am Maura’s mom. I am also her full-time caregiver.

A mom teaches her child life skills so her child becomes an independent adult. A caregiver fills in where those life skills have been hampered or have no developed. Two very valuable vocations, one pays crap, the other doesn’t pay at all. Lucky me, I get to do both for free.

Good thing my boss is so cool.

Today, I did things for Maura like wash her hair, blow dry it, helped her get dressed, helped her turn on a show, helped set up her tablet so that it could charge via extension cord. I threw her clothes in the washer. I shall throw them in the dryer, and put them away for her. I took care of other needs she had that I won’t get into.

I also watched her pull out pizza boxes and dish herself up some cold pizza for breakfast like a regular teenager, intervened when she picked a fight with her sister over the use of the television, and fought her for the chocolate her brother gave both of us.

There’s so much normal interspersed with the extraordinary. And the thing is, the extraordinary I do for her is something expected of all moms when their children are infants, toddlers, preschoolers. That stuff extended its need naturally. It’s not like one day she was blow drying her own hair and the next day I had to do it for her. I’ve always had to do it for her. Someday she may be able to do it on her own.

And that’s the hope I’ve been given. For each task I do for her now, each act of caregiving, I still have the hope that she can manage it a bit on her own someday. Any step of independence, no matter how small, is huge. Last year, I still had to prompt her to get out of the bath. And by prompt, I mean plead and bargain and empty the tub first before being able to pry her out of it. Her ending her bath on her own is amazing.

She also now will let the dogs out or back inside when asked. She can take her plate to the kitchen. She could someday empty the dishwasher or take bagged up trash to the garbage can. She can help around the house, which would be awesome.

But for now, I’m still cleaning her room.

Outside of the house, it’s a balance of giving her freedoms and keeping her on target. There’s verbal prepping that I must do, triggers to watch out for, and always on the look out for quick exits and restrooms, depending on the emergency. It’s how I’ll try to park so that she has extra room to open the car door without hitting another car. It’s worrying the few times I let her go into the bathroom alone. It’s hoping we can hit three stores only to change plans after one. It’s both an opportunity for self-advocacy and a lesson in following rules and taking turns. Mom needs to go to the dog food aisle. Yes, we can look at clothes. No, we’re not going to the toy aisle today, you already picked out a book.

It’s letting a stranger ask her a question, and waiting to see if they understand her before stepping in to provide translation of what Maura said. It’s letting her move at her own pace when the person behind us thinks we’re going too slow. Which happens a lot. On stairs. It’s backing her up in her the right to own her space in this world. It’s letting her choose the music in the car, even though shotgun should shut her cakehole because driver picks the music.

It’s letting her choose her backpack, choose her jacket, choose if she wears socks with her shoes. It’s standing back to let her put on her own socks and stepping in to help with the shoes. It’s cutting her fingernails.  It’s fixing her plate at dinner time because she will overfill it. It’s letting her pour her own drink. It’s pulling back her hair into a pony tail every time she asks, but asking “Do you want one or two?” first. It’s putting sheets on her bed because she just. can’t. do. that.

It’s finding the energy to go watch when she says “Watch Mom!”. It’s sitting to watch a movie for the 87th time because she’s patted the seat next to her on the couch. It’s high fiving her, hugging her, tickling her because she still needs those things constantly. It’s me at my friend’s party, being the one checking on her teenager every five seconds while on the swing set – partially for safety reasons, and partially because the girl is enjoying herself so much, I can’t help but mirror the big smile on her face.

It’s everything, all the time, twenty-four hours, seven days, 52 weeks, and so on, and so forth, world without end, amen.

I’m lucky she puts up with all my interference.

I’m lucky that this very cool kid lets me hang out with her.

I’m lucky that when I leave, she misses me, and when I come back, she gives me the rockstar treatment, screaming and laughing and hugging me now that I’m home.

I’m lucky that she makes this dual life of mom and caregiver not just easy, but fun.

It’s exhausting at times, and the pay, as I said, is less than crap. But the rewards – getting a front row seat in her amazing life – are worth it.

 

 

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[photo of Maura, long brown hair hanging down, pink jacket and gloves on, face beaming as she enjoys a rare PNW snowfall]

 

 

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