Conversations with the teen girl

28 Mar

Our water line has decided to sprout yet another leak (because our house apparently  hates us), so Josh turned off the water to save some money while we wait for the property manager to get someone out here to fix it, and proclaimed we should just go out to eat to keep from dirtying dishes.

Yes, we’ve been down this road before.

As we drove to the Chinese restaurant, the teen girl announced that “If it’s not on the internet, it doesn’t exist.”

I said “That’s not true.  What about happiness?”

She tried to argue that you could find happiness on the internet.  I countered that you can find things that make you happy, but true happiness comes from the heart and from the mind (which I thought was quite the clever and wise response.)

My sweet little cherub of a teen girl then says “Well, you can buy brains and hearts on the internet.”

“Yes, but that’s illegal.” I said, giving up on being wise and clever.

Josh wanted to know how she knew brains and hearts were sold on the internet.  I told him these are things we really don’t want to know.

I should probably tell the teen girl she can’t sell hearts or brains on the internet.  Because it’s illegal.  And we’re not that kind of people.  We are a kind of people, but not that kind.  We have standards.

 

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.

b8c6a255cd94d498b286d79a574e062f

 

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.

 

 

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