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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 –

 

And this was her response to him –

 

 

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 32 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.

 

Okay, it’s been a couple days, but I had to add on to this post –

One of my readers sent me the link to what was actually said - and I quote – “…half-wit ass niece…” you can hear the woman trying to change the subject but not very well because he kept going on.

He did apologize later that day with this –

To everyone, please accept my sincerest apologies. It was not my intent to hurt any one. Sister Odell is a made up character, she’s not real and my intent was not directed at any other real person. And most certainly was not directed at any one you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were ….. DONT TRIP HE AINT THRU WIT ME YET

 

 

 

 

 

This is NOT a subject.  This is our daughter, and our lives.

Also, someone asked why I was mad at the whole state of Texas.  Let me clarify – the state’s penal laws allowed that paraprofessional to get away with what she did and that’s what I am mad about.  I do love many a citizen of Texas, one of whom is Maura’s loving godmother.  Who would kick Steve Harvey in the shins for us if she ever met him.

 

 

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.

 

 

Since I’m making up medical terms…

3 Mar

Someone has to, right?  Since no one knows what Maura has, we call it Sherlock Syndrome (it’s a mystery!).

But then in chatting with that super-awesome sister of mine about my bottle of Prozac that helps with my anxiety, she said “Gee, what do you have to be anxious about?  I mean, besides spending twenty hours a day wondering what the hell Maura is getting into now?”

Sarcasm is our first language in our family. And the sister even said how Maura was a peach the whole time.  But even so, she’s a stealthy peach with mad ninja skills who might decide today is the day she will push all the buttons on the microwave.

Hence the bottle of Prozac.

It was inevitable I think.  Anxiety runs in the family.  Usually it just manifests as being a worry-wart.  But Maura tips me over that edge of “manageable” to “hiding in the bathroom trying not to hyperventilate from the stress of it all” at times.

As I told my sister – “It’s like having Post Traumatic Stress Disorder, only you’re never post trauma.”

“So Ongoing Traumatic Stress Disorder then?”

Something like that.  Except in thinking about it, it’s not always traumatic even.  Just stress.

And then I figured it out.  I have OSD – Ongoing Stress Disorder.  If it’s not a thing, well, I’m making it a thing.  My stress, just like the rest of us in the special needs parenting category, is ongoing. It’s every day and never ending.  It’s not always bad.  It’s not always traumatic.  You actually get used to it.  Or more accurately, you stop getting worked up on the littler things in life, and save the worrying for the bigger things, or for afterwards.  I can be quite the calm person during a seizure now.  Afterwards, I’m either laughing, or locked in the bathroom breathing.

It’s a weird balance of shrugging and embracing the roller coaster of emotions while having that little voice playing in the back of your head telling you how everything could go wrong.  Which is where the Prozac comes in, to quiet that annoying voice.

It is mentally exhausting in a way you get used to.  You know that the day could be golden or go south in a split second.  You are always hoping for the best while preparing for the worst.  You are ready for anything knowing that life will throw you a curve ball and you’ll be flailing about trying to figure out what to do.

And you call all this your normal while being aware of how very not normal it is.

That all said – I cannot emphasize enough that I think my life is pretty darn good.  Yes, there’s an underlying level of stress, but our good days outnumber our bad ones by a lot.  We have learned to embrace the sometimes ridiculous nature of our lives and have grown stronger with the challenges thrown at us.  But I think that realizing that it is also hard and constantly stressful has helped me achieve this state of acceptance.  The lifestyle causes me ongoing stress, and so to ensure that we have the best life possible, I need to deal with that stress in whatever way is best.  There’s no shame in admitting this life is hard, because it IS hard.  It’s damn hard.  But it’s also damn rewarding, and pretty damn wonderful.  It’s the only life we’ll be given, and despite all the stress, I choose to make it the best life possible for all involved.  And if that means that I take 10mgs of Prozac every morning with my cup of coffee, then so be it.  It’s how I keep my OSD manageable.

 

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