Steve Harvey and Texas are making me mad this morning

27 Mar

First, I spotted this, via Autism with a Side of Fries – to summarize, this mom heard comedian Steve Harvey on his morning show, making fun of special needs people.

 

Her reaction?  Her trying to stay calm then building up to angry tears and frustration?  Exactly the emotions that played out with me.  Because Maura?  Maura could be that 34 yr old in church, playing with dolls, wearing bobby socks, and making weird noises.  She WAS that child last Sunday.  My daughter is a beautiful child of God and the last place she should feel unwanted at is in church – and the Pope would back me up on that, thank you very much.

And that mom has it right – why is it still okay to make fun of these people?  These people who can’t defend themselves?  Why?  You didn’t need to go there Steve.  You didn’t.  Shame on you.

“This is our lives!” the mom says.  And I get her.  Oh, I get her so much.  I want to just give her a big hug, because I know.  I know what she’s feeling.  We love our children so much.  We love them so much because we know that their paths are so very hard, that they will be shunned simply for being disabled, for being different.  And yet, we’d prefer the quiet shunning versus them being ridiculed publically.  It is a hard life that we somehow find the joy in.  We accept our children for the beautiful souls that they are.  They don’t deserve to be ridiculed.

The above was brought to me as I was still reeling over another story I read out of Harris County, Texas, about a special needs student who was assaulted by his paraprofessional – the person who is supposed to be keeping him safe.  And yet, because there was no “injury”, there will be no charges against this grown woman who put her hands on a child.  She is on video, choking this boy, but because she didn’t actually physically injure him, there is nothing to charge her with.

But there was injury.  Injury to the child, who has had trust broken.  Injury to the parents, who sent their child off to school, told to trust the school, only to have their child abused and not told about it for days.  The greater special needs community has been injured, because this is one of our biggest fears.  No, there might not have been physical injury, but there was harm done. We’re told to trust schools, to send our children off, all will be well – and yet, these stories constantly pop up and remind us that the world is an even scarier place if you are disabled.  The para-pro may have lost her job, but the family in this case lost something much more precious than a job.

This is our life.  The life we choose to celebrate and live with as much joy as possible.  A life where I revel in every one of my daughter’s hard-earned achievements while knowing that she’s fodder for comedians who don’t think, and that her chances of being abused are astronomically higher than the rest of society. And I will continue to be her voice, to speak out against these things, because she is totally worth it.  Because Maura deserves better.  We can do better people.  We can do better.

The bigger Olaf came via the kindness of a stranger, that my husband met on a plane.  This stranger heard Maura loved "Frozen" and gave the big Olaf to Josh to give to her. Because most of the time, people are good.

The bigger Olaf came via the kindness of a stranger, that my husband met on a plane. This stranger heard Maura loved “Frozen” and gave the big Olaf to Josh to give to her.
Because most of the time, people are good.

High Five Poopy! or, why we celebrate everything

25 Mar

This morning, an article was brought to me via The Mighty (which if you’re not following, follow them!) The author of the story, Liz from Our Version of Normal, pointed out one something that happens in the disabled community –

It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.

Here, go read the full article, then come back…I’ll wait…

 

Read it?

Okay, let’s go on then.

I found myself totally and completely agreeing with this mother.  This mother who has to feel the pull of one child being more accepted than the other child even in their own special community that should be celebrating both children.  How heartbreaking must that be?  How frustrating that must be.

And yet, people do it to us all the time, even within our own communities.  Your child has autism?  Someone will ask what their savant skill is. They have to have a savant skill, they saw it in the movies. (Spoiler – not every autistic person is “Rainman”.)  People will send you clips of people with autism who also play an instrument amazingly, or draw amazingly, or do something amazingly – as long as that “something” is deemed worthwhile.  (Quoting the entirety of their favorite movie isn’t deemed as amazing.  Nor is the ability to strip down to underwear in 1.2 seconds.)  If your child has Down Syndrome, you are sent clips of other people with Down Syndrome who have become actors, models for Target, etc.  Cerebral Palsy?  Here’s an article of a person with CP going to college and becoming valedictorian.  Is your child blind?  Here’s a news clip of a blind person making it to the top of Mt. Everest!  Missing a limb?  Here’s seventeen athletes who are missing limbs!

Basically, your email and social media sites become a handy way to dump inspiration porn at you.

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And yet…

And yet, as much as people want to throw feel good stories your way, stories of people with similar disabilities doing so much more than your loved one will ever be able to do in an attempt to cheer you up…

…some of them don’t want to hear about your realities.

They don’t want to hear the real life in the trenches stories you have, of sleepless nights, worries, ER visits, screaming fits that last two hours, feeding issues, doctors blowing you off, schools shortchanging your child, the panic attack you had while showering, or poo.

As I told a friend who’s going through her own medical shit (literally) yesterday – “Anyone who doesn’t want to hear poo stories isn’t a true friend.”

Social media loves to gorge themselves on stories of the preemie baby who doctors say may never walk/see/do origami grow up to defy all odds and be a gold medal Olympic champion.  We’ll share the shit out of those stories every day.  But to parents like me, parents who’s child’s most exciting achievement in life this year is pooping five times in a week, those stories just remind us “Not my kid.”

No one wants to hear that.  I’ve been told I shouldn’t limit Maura by my thinking, that she could live independently if we just try hard enough.  Oh sure, Maura may have an IQ of 48 and leaves the doors open in winter and is almost 12 with the mental age of your average preschooler but with less of a vocabulary – but we shouldn’t sell her short with our negative thinking!  Here’s fourteen more inspirational articles about people with disabilities defying the odds!

In the name of love….stop it!

To the section society that is all about celebrating diversity and promoting acceptance, I beg of you, accept us too.  Accept those who aren’t in Target ads, who don’t have a savant skill, whose biggest achievement this month is trying a new food or finally being able to sit up on their own.

Be like my people.  My friends who have the new catch-phrase “High five poopy!”  after I posted that it’s Maura’s new thing to say every time she poops (seriously, five times in seven days this week?  That’s proof that God answers prayers!)  My friends are awesome, and have celebrated every one of Maura’s achievements, no matter how small.  My friend, who comes over to my house and goes to use the hall bath (aka Maura’s preferred toileting spot) and just says “Yeah yeah, I know, no big deal!” as I try to warn her about the current state of it.  (Really, I clean that bathroom constantly…but…Maura.)  My sister, who offered to watch the teens and Maura so I could go to Spain, and was all “Gee, why would you be stressed and need Prozac?” sarcastically as Maura wandered by with a chainsaw (okay, that might be an exaggeration, we don’t own a chainsaw.  But she did try to cut open the watermelon with the butcher knife, same reaction on my part.)  My dear sweet college friends, who’d be all “Hey, it takes some good coordination to start a chainsaw, good job Maura!” if we did have one and she did start it.  My cousins, who’d be all “Yep, she’s one of us.  We love chainsaws too.”, then would let her steer the tractor (because every girl should know how to drive a tractor.)

These people, who accept my anxiety levels and celebrate Maura’s newest skill, no matter what that skill is – these are the people who show true acceptance.  These are the people everyone else should be like.  These are the people who listen to my poo stories, and are true friends.  They don’t tell me I’m selling Maura short, or tell me to try harder to make her appear less disabled.  No, these are the people who “high five poopy” along with us.

And that is true acceptance.

P.S. – please don’t gift us a chainsaw.

 

 

My kids have had it lucky

18 Mar

Something on the internet caught my eye.  It talked of a 1979 first grade readiness checklist – and how one of those things was “Can he travel alone in the neighborhood (four to eight blocks) to store, school, playground, or to a friend’s home?”

This, of course, was followed by a slew of “I wouldn’t let my 7 yr old walk down the block alone!” and “If I tried that, someone would report me to CPS!” type comments.

I was a first grader in 1979.  I wasn’t allowed off the block alone – I was tiny for my age and my mom was afraid cars wouldn’t see me.  I could go places with my brothers (who were 10 and 9 when I was 7) and eventually, I was tall enough to leave the block alone or with my best friend in tow.

And so it was.

When we moved to a small town in Michigan, we decided to let the boys – who were in fourth and second grade – walk to school by themselves.  We had established a route that they weren’t to stray from, told them what to do if they thought a stranger was following them (go into a local store and explain this and ask to call home.) By 9 a.m. the first day, I had heard from three friends about how they saw my boys walking.  They loved the freedom and didn’t test our trust.  Nothing bad happened.  Yet so many of my friends who lived elsewhere were astounded that I’d let them walk to school.

Except if you lived in town, walking to school was normal.  You’d see herds of kids, some with parents, walking home.  There was the story of the person who saw her neighbor’s girls talking to a “stranger” in a car and immediately went over to investigate – only to meet the girls aunt.  But it was that sort of thing – everyone looking out for everyone – that made it safe for our kids to do the once normal thing of walking to school.  They could run up to the store that was a few blocks away, or walk down to the library.  So many times, I would wave my trio off as they walked the two blocks to the library.

And then we moved to Dublin. There, it was completely normal for everyone to make their way to school by foot or bike or scooter or bus or tram.  At 11 years old, my daughter was getting herself to and from school a mile away, and Maura knew how to travel on the Luas (Dublin’s light rail).  We had a corner store down the block, and another four blocks away.  During a school meeting for our 4th year students (think high school sophomores) we were told not to drive our boys anywhere, they could make their own way to different off-site venues, we shouldn’t coddle them – they had to learn some time.

I’ll admit, I didn’t go about this easily.  My husband talked me off various ledges as the kids ran out the door towards these ever-expanding freedoms.  There was one moment when we first moved to Ireland where I realized I’d set my sons off on their own in a foreign country.

They survived.

I survived.

It’s a growing process, one I’m glad they’ve gotten to experience.  In a way, they’ve been able to experience part of my own childhood, those freedoms that these days seem hard to come by.  Doesn’t mean I don’t worry – I am Anxietywoman, I’m going to do that anyway.  But I have the security of knowing that every other step of the way, they’ve managed.  In this case, it’s better to let go gradually than do the proverbial “rip the band aid off” routine.

Meanwhile, Maura’s still not leaving my sight.  I will be helicoptering around her for a long time.

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Teen girl on airport tram, after her first solo flight

 

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