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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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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]

 

 

The scars life leaves…

27 Oct

 

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Seventh grade me, posing by the front door, ready for my confirmation (hence the stole)

 

 

I think it was November. I remember it was some time in the middle of the week. A Wednesday or Thursday perhaps, but one of those days where there’d been a day or two of normalcy, and then a day or two of the new reality.

It was seventh grade in the Catholic school I’d gone to for all but kindergarten. It was my hothouse of growth, the second-biggest part of my life outside of home. It was where I spent half my day at, with people I’d spent seven years of my life with.

I thought I was liked. I thought I had friends. Looking back, I can see the great divide between school and home life. We were at the edges of the school boundary line, so I didn’t really have school friends in my neighborhood. I had my friend Laura*, who lived on the same block as me – but Laura went to the public school. My school friends stayed at school, except for the occasional birthday party or sleepover.

By seventh grade, my world had already been shaken. My dad had left when I was in fifth grade, something we didn’t make public knowledge for the first year because there was I guess hopes of reconciliation. By seventh grade, it was generally acknowledged that he was gone.  We were adjusting to the new normal of a one-parent household and Sunday visitations and Dad having an apartment in the city.

And so one day, I sat with my friends at lunch, and everything seemed normal to me. The next day, I walked up to the table and before I could sit down, one girl looked up at me and told me I couldn’t sit there, they didn’t like me anymore. “Go sit at the loser table.”

Because of course there was a loser table, even at my nice Catholic school, with sixty-odd kids in the seventh grade class, all of whom had known each other for years.

I remember some of the other girls didn’t look at me. I remember the spokesgirl smirking. I remember going over to said loser table and asking if I could sit with the two girls there. I don’t know if they asked what had happened, but it didn’t matter, because I had no answer for them.

Adults at the time gave me theories. It was because I was too popular and as the one popular girl moved away, the position of queen bee was open, and the other girl really wanted to be queen bee. It was because my parents had split up and that was “catching”, so I was ostracized for that.

But as an adult myself, I think it was more basic than that. I was an awkward girl with a speech problem, a skin condition, and a bad haircut. I was a dork. I was the opposite of cool. It was seventh grade, and let’s be honest, 12 year old girls are kinda scary and mean. In a way, I was ousted for totally normal reasons.

My status as a social pariah became well-established overnight.

Not only did just about every girl in the seventh grade class stop speaking to me, but the boys did as well. Well, except when those boys were teasing me. And by teasing, I mean taunting my height or my speech problem – which had become my normal and I had been told to just ignore. No teacher seemed to notice my sudden change in status, or the cold shoulders I was given by my peers. There was too much going on in the school administration to notice one girl.

It wasn’t all horrible because I became friends with the other two girls at the outcast table. We hung out after school hours. I introduced them to my friend Laura, and we all became a group of friends.

It wasn’t all horrible. Until it was.

For some reason, the two girls who had befriended me in my time of need decided to also cast me off, taking Laura with them.

And there I was, in late spring of 1985, completely friendless.

I begged my mom to let me change schools, to go from the Catholic school to the public junior high. I couldn’t bear the idea of spending one more year in an environment where I was friendless and ignored. Catholic school was getting too costly for my mom anyway, in her new single-mom status, so she allowed it. I went to a new school the following fall, which was a new school for everyone in the district. I made some friends, my friend Laura and I patched things up, and I moved on.

Sort of.

Because come high school, many of my Catholic schoolmates were once again my classmates. A couple of them and I became friends again. Some just pretended they never knew me – including the head mean girl who told me I no one liked me anymore. We had a couple of classes together where we just kept our distance from one another. And then, after four years, I left the state to go to college and never quite looked back.

And yet…

What happened to me in seventh grade had such an influence on the person I became. It is something that entwined itself into my psyche probably because it came at a time of great upheaval in my home life. Imagine having a year where no matter where you went, you were being rejected and everything you knew changed. Friends turned their backs on you, parents left, taking financial stability with them. Things you enjoyed doing had to be given up. In the space of two years, everything changed – including me.

I was taught, in hard harsh lessons, that I couldn’t trust people, that people would walk away from me, that people would stab me in the back and then ask for the knife back as if I stole it from them. I’d make friends and then wait for the moment they realized they didn’t want to be friends with me anymore, certain that at some point, they’d realize I was a loser and leave.

It is something I’ve had to continually overcome all of my life. Which all sounds a bit ridiculous and overdramatic. But if it’d been a physical injury, it would be one that healed, but left scar tissue and a limited range of mobility. And considering it that way doesn’t seem overdramatic at all.

The amazing part to me is that those girls involved in the great unfriending of seventh grade probably have never thought of that Wednesday or Thursday in November. It wasn’t a pivotal moment in their life. It changed my world, not theirs.

Why does this matter now?

Because October is Bullying Prevention Month, or so social media keeps reminding me. And looking back, so much of my formative years were doused in some form of bullying, and it affected me. It affected how I developed and how I viewed relationships with people. It wasn’t something to just get over, because it wasn’t one thing, or one time. I didn’t have a bad day, I had a bad year. I had two bad years. Honestly, I had a few bad years.

Somehow, I came out of it all with only some baggage. Other teens don’t come out of it at all.

In a way, I’m a survivor. Feck that – I *am* a survivor. I’m scrappy as hell, and manage to overcome a lot despite what people have done to me. And I’m here to say to teens, if you’re going through the crappiest year of your life – it gets better. I promise you, it gets better. You will leave all that teen shit behind and step out into the bigger world and it will be better. I would never ever not for a million dollars relive high school. I made lifelong friends in college. I met a guy who likes me for the weirdo I am. Oddly enough, I’ve friended some of my old classmates on Facebook and like them for the adults they became.

And I’ve gone on to live a great life – something oddly enough, may not have happened if I had stayed in my comfortable little bubble of a world. My desire to get the hell out of town put me on a path to my current life, where I’ve done far more than I ever dreamed.

Will you get over what’s been done to you? I don’t know. I do know that wounds will heal and time will give you perspective. It may change you, but you can work with those changes and keep them from becoming negatives. The pain will lessen, and it will stop hounding your waking moments. You can learn how to thrive, and make your own path, find your own way. You can tattoo over that scar and make it something beautiful.

I promise – it can get better.

 

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Adult me, with my mermaid hair, sitting in a bar in Dublin, Ireland having a fabulous time (friend not seen because she was photographing me) 

 

*names changed for privacy  

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