Wednesday, November 5, 2014

To my sons

To my sons

My beloved sons
Your smiles are etched into my mind, my soul, my heart.
Your laughter is my favorite song.
Fierce, feral, deep love for you courses through my veins
Beats in my chest
Fills my lungs.
My precious sons
If only you could know how much you are loved
How much you are wanted
How important you are
How special you are.
My magnificent sons
I couldn't be prouder of you, my little African warriors.
You've literally seen and lived Hell on Earth
Yet you still stand
I draw strength from you
My wonderful sons
If only you could see yourselves the way I see you;
If only you could see yourselves the way God sees you.
You are beautiful
Capable
Dedicated
Creative
Strong.
My fabulous sons
You are not what they say
You are more than what they could ever know.
They are not worthy of you
They cannot compare to you.
My brave and beautiful sons
You live your life so fully
Everything you do, you do big and bold
God's love shines so brightly in you.
My one of a kind sons
You are not of my womb
And that is a good thing
Because my womb is too small to contain the love I have for you
You are the sons of my soul, not my body
You contain the best of your first mother and father inside of you
You are a living, walking tribute of their love.
My fun-loving sons
I brought you into my home to keep you
I brought you into my family to love you
I never dreamed that I might lose you.
My growing sons
I know you think Mom and Dad are the pinnacle of strength and faith
I know how much you look up to us
But the truth is we are scared
We don't know what the future holds; only God knows.
Yet through our fear we are trusting
Hoping
Praying
Believing
Wishing
For a forever with you.
My awesome-sauce sons
I can't see my life without you
I have thought to myself,
"If something happens to them, I won't be able to go on."
I know that thought is wrong to have
For you, for your dad, for your brother and sisters...if I had to go on
If I had to cope
If I had to face my life without you
I would have to find a way
A way to continue living
But I don't know how.
My beautiful black sons
No matter what
Please know
Please believe
Please feel
My love
It will never leave you
Inside I will never leave you
God will never leave you
I love you
We love you
You are ours
Intertwined
Connected
United
By the love of our family
Forever.

Tuesday, November 4, 2014

Fear

Fear

I have blogged more over the past few weeks than I typically blog in a year. Some people are "stress eaters." I wonder if I'm a "stress blogger?" I hope to break that habit; I don't want to blog only when something is wrong.

But...something IS wrong.

Around 4:00 PM today I learned that 6 year old London McCabe's mother threw him over a bridge to a painful death - presumably because she could "no longer handle" caring for an autistic child.

It cut deep. It would have been painful even if I did not also have an autistic 6 year old. Such a young child. Such a senseless and awful way to die.


And sadly, though the location his mother chose as the murder site is unique, the murder itself is not. Though devastating, London's death represents just one of a long string of recent deaths of disabled individuals at the hands of the people whom they should be most safe with - their relatives/caregivers.

I allotted myself about 5-7 minutes to react. I was in shock, and I was sad. And frustrated, because the first (and second, and third) articles I pulled up on my phone to learn more were laden with sympathy for the murderer rather than for the child who'd been killed. Similar to the coverage of the attempted murder of Issy Stapleton, or the murder of Alex Spourdalakis, or any of the many "poor parents" who supposedly "loved" their disabled child "so much" and had "suffered for so long" that they finally just "snapped."

I reached out to the people whom I knew would be reeling just as much as I - the autistic community. I knew that there would be solidarity there; there would be mourning for London there; there would not be empathy and concern for a murderer there.

Then I put my game face on.

I had to pick up my kids, and though there's nothing wrong with showing emotion, it is difficult for them to see me saddened or hurt. They feel what I feel, and it crushes them. I needed to shield them from this ugliness, needed to have a neutral facial expression so as to not "set them off."

Game face. On tightly.

Grabbed kid one from her school.  As she snacked happily in the car seat, we headed to get kid two and three from their school. Then we headed to pick up kid four from his school. (Kid five was with grandparents.)

I walked into the building. It was unusually abuzz with people because it is voting day and the school is a polling location.

I walked to the desk, picked up the clipboard, and checked the appropriate box. I engaged in my small talk script with the office staff person while I waited for kid four. I noticed that they had some cool "I Voted" stickers in a basket on the desk.  Thinking that the kids might like them, I picked some of them up. Then I turned around to hand them to the kids.

My daughter wasn't there.

"Guys, where's your sister?" I asked. They looked up, surprised. They'd been distracted by the crowd of people coming to and fro from the polling booths. They hadn't noticed that she wasn't there.

I dashed around the corner, calling her name.  No sign of her. I ducked into restrooms and stairwells. She wasn't there. I tried a few classrooms. Nothing.

I willed myself to be calm. This wasn't the first time she'd wandered, unfortunately. It happened one summer at church too. That time I had dissolved into worried tears after ten minutes of unfruitful searching, which was understandable...but getting emotional slowed me down and prevented me from thinking and acting strategically. I was determined not to do so again.

While I was searching, kid four arrived. I made a request for the staff to do an 'all-call' announcement for her over the school intercom system requesting that she come to the office. I told a few of the kids to describe her for them, as I was certain they'd send personnel to help look around campus also. Then I went back to searching.

Knowing my daughter, I tried to think of where she might have thought to go. As I pondered, I realized what a perfect opportunity days like this pose for child kidnappers.  People coming in and out of a school without raising anyone's suspicion because presumably they were all there to vote. This would be an ideal situation to lure away or snatch a child. Who would notice?

Even if she cried or protested, people would just assume that she was being disciplined by her parent. And with the increase in interracial marriages and transracial and international adoptions, it's not unusual to see families whose members are different skin colors, so that may not "raise flags" for anyone.   She could already be in someone's trunk, en route to her doom...

Nope. Not thinking that way. Where would she be? Where is my baby girl?

Think.

I had an idea. It seemed kind of silly, and perhaps a "long shot."  But I know her. It was possible. I rushed off to check.

She was there.

Standing peacefully by the pond at the side of the school. Away from the crowd. Away from the noise. Sometimes she can handle crowds and noise, even seeks it. Sometimes she can't. Today was one of the latter.

She left to give herself what she needed. Solace.

I ran over to her and slipped my hand in hers. She looked up and smiled. I couldn't smile back because I was holding back relieved tears, so I gave her a thumbs up sign.

For a short period of time my daughter was missing and it was awful.

Forever London McCabe will be missing. Why is that not awful? Why is it instead "understandable?"

It is not fair nor respectful to London's memory nor to the millions of disabled people worldwide that people feel more affinity over his autism blogger-turned murderer mom than they do him. Autism is not to blame for his death. "Lack of services" are not to blame.  "Caregiver burnout" is not to blame.


Jilian McCabe IS to blame.

Rest in power and perfect peace, sweet London. :(



Sunday, November 2, 2014

The Hypocrisy of "I Stand Sunday"

This whole situation annoys me so much that I actually wasn't going to even write any blog posts about it. I've vented about it on FB, but that was as far as it was going to go. But then a few minutes ago I saw a post online about #IStandSunday written by Phil Robertson of Duck Dynasty.  (You know, the one who has made cruel and bigoted statements about marginalized groups, but professes to be a Christian.) And the hypocrisy of it all was so annoying that I penned my second letter to him. I haven't sent it via snail mail yet (only posted it on his FB page), but in the interim there is a copy of it.

In it, I ask him WWJD (what would Jesus do)?  I know that He would not condone this. He wouldn't say #IStandSunday should be used as a vehicle for hatred and deprivation of human dignity.

"Dear Mr. Robertson,

I am saddened that you are coming to MY city for #IStandSunday as a "Christian" speaker when you have publicly denigrated people of color, people living with HIV, and the LGBTQ community.  I am a Christian and do not condone hate speech nor discrimination.

When people who have said the hurtful things that you have said about others are perceived by the public to be the face and voice of the body of Christ, no one wins. Jesus demonstrated humility, love, and truth in His ministry.

I think that you need to take a good, long look at your own words and deeds and truly ponder the question, "What would Jesus do?"
Would He act the way that you have been acting, Mr. Robertson? Treat others with such disrespect and unkindness? State such hurtful things about them, such as calling them immoral and insinuating that they are being "punished" by God?

I am part of an HIV affected family, Mr. Robertson. Would you look in my children's eyes and tell them how "immoral" all of us are and that we are deserving of "God's punishment?"

If you are indeed a Christian, you and all of the people gathering with you should know that the way you are going about things is NOT pleasing to God, bringing all of this strife, division, and dissension to our city.  Over pieces of paper? Over unfounded fears? Really?

I'm praying for you. I mean that sincerely, not sarcastically. Praying hard."



Photo credit:ccclincoln

Saturday, November 1, 2014

Speaking Truth to Power: Autistics Speaking Day 2014!

(To learn about what "Autistics Speaking Day" is, click here.)

This is my very first Autistic Speaking Day! And true to form, I'm writing this in the evening, the day of (it's all about that time agnosia).  I have no idea if it will be able to be included, but I'll try anyway.) ;)

Several months ago, a non-Autistic mom of Autistic kids (whom I deeply admire) expressed that in some ways, she felt "stuck in the muck" between autism "warrior" curebie moms and Autistic adult advocates...not really belonging in either place.  I didn't speak up at the time, but even though I have known for over a year that I myself am Autistic, I could still understand what she was saying.

Like her, I cannot, and have never been able to, relate to the parents who feel that autism has "stolen" their child and compare the day they received the diagnosis of autism to the 9/11 terrorist attacks.

But then, on the other side, there are some ways that I don't relate to my Autistic brothers and sisters either. I'm not referring to the individual variation you'll find in ALL people. And I'm not referring to racial, religious, gender, or other differences either. I'm talking about something else.

Many Autistics have gained a level of knowledge through their lives experiences, many of which have been painful ones. I am a "newbie" of sorts to neurodiversity and to Autistic activism, but despite that, I am right there with them.

Autistic adults are amazing. I am completely in awe of my community every day. They are NOT without flaws and certainly our community, like any other, has many areas where we could, and MUST improve.  However, even with all of our "warts" the core purpose of Autistic activism and advocacy still has tremendous merit - and it is largely altruistic as well.

Despite being regularly unappreciated, misrepresented, ignored, belittled, and misunderstood, most Autistic adults are primarily engaged in activism because they are motivated by a desire to prevent others from going through the rejection, discrimination, and hurt that they've been through not just from society as a whole, but sadly, often from within their very own families--families that didn't understand them and often didn't accept them.

And that's the major difference between myself and many other Autistics, I think. I've been through a lot of painful things as well in my lifetime. I feel their pain, and their passion. But only to a certain point.

Because all my pain and rejection came from the outside. I fortunately never had to endure any of that from my family. They knew I was different from others, though they weren't exactly sure what it was called or why. They didn't care.  They loved me. Supported me. Accepted me.

I believe sincerely that a lot of the reason that I lived and navigated my life successfully for over three decades as an undiagnosed Autistic female of color is because even though the "real world" was ableist (and sexist, racist, classist, and a whole lot of other "ists" too, but that's another convo), and was brutal, intolerant, cruel, and hateful, every time I walked into the door of my home I walked into a haven.

My family is NOT perfect. OMG they are SO not. We're all a little "off" in our own way. But all my life from the day I was born to the present I knew, and I know, that I am 100% loved and accepted exactly for whom I am.   That was a powerful, and much needed truth. Sometimes it was all I had to keep me going when everything in the world was falling apart around me. I could rely unequivocally, unfailingly, unquestionably, unconditionally on the love, acceptance, and support of my family. Not in spite of being Autistic/different. Including it.

And this Autistics Speaking Day, and every Autistics Speaking Day afterward, that is my hope, my prayer, my wish for ALL of my people on the spectrum. That even when the whole world is spewing out nothing but hate, they can rest in the knowledge that their family (and for some, "family" will refer to their family of CHOICE, not their relatives) is giving them nothing but pure unadulterated love.

Happy Autistics Speaking Day 2014 to all of us.  Much love from me and mine.



Photo credit: Autism Positivity WordPress