One of the core values of Brand Tara is that Life sucks. My books are full of everyday problems like PTSD, body image and this one that is very personal to me…Autism. So this Serious Sunday, we look at what it means to REALly be the parent of a child with high-functioning autism (formerly called Asperger’s).
And please…pretty please…NEVER do this…
Yes, this girl does have a crop and no, she ain’t afraid to use it.
But seriously, raising an autistic child, especially as a single parent, is both the most important and difficult thing I have ever done. Yesterday is a perfect example of what our life is REALly about…
This whole week has been big for us, because of Thanksgiving. PanKwake has been so great. We had the adults’ celebration on Thursday evening and she slept right through the whole thing, even me straightening the kitchen and unwinding a bit. Then Friday, we had her friends over. Of course, that is utter and complete organized chaos, but we all loved it. I even allowed one of her friends to sleep over.
Yesterday then I had a friend that I first met through the BDSM lifestyle over. We have been close friends for close to three years now…and she had never met PanKwake. That’s right…never met my child, but not for the reason you think.
I am not ashamed of my kinky friends or afraid they will harm my child. That is ill-informed lies…in fact, if you look at the headlines…be more worried about Sunday school teachers/priests, Scout leaders and teachers than alternative lifestyle types. And this friend in particular is a kickass Mom herself.
But I have lost loads of friends, some really good ones, when they met my PanKwake. Some of them are dismayed at the way I parent her, perhaps thinking she is spoiled and needs more discipline. That I can handle better than the ones that feel sorry for me. I don’t want or need anyone’s pity for the gift of my Super Hero…and next step in human evolution (Homo autistica).
I had arranged it so that once more my friend would not meet PanKwake. Except that the friend, who stayed the night, her mother was running late and I could not leave PanKwake’s carer with TWO special needs gladiator princesses. So I sucked it up and took my friend back to the house…and everything was great. PanKwake even used her good manners when my friend gave her the book that she had bought for her.
But the piper must always be paid. At 3:30 last night, PanKwake had one of her REALly bad meltdowns. I mean kicking, screaming, trying to run away, cursing, ‘You lied to me,’ ‘I don’t want to live here anymore’ ones. Why? Because she wanted a pizza…delivery at that time was closed already. Yes, I had promised her one, but she fell asleep as my friend and I came back and by the time either of us remembered it was just too late. There was NOTHING I could do, but wait it out. Forty-five minutes… 45 long minutes… three-quarters of an hour.
Now to a single person, someone who has never had children or even the parent of a ‘normal’ child that sounds like my child is spoiled. But there is the difference between a temper tantrum and a meltdown. A temper tantrum is about getting what you want. A meltdown is a PANIC ATTACK. When I first read that, it changed how I saw my child and how I dealt with her.
As I have shared before, I had a major depressive episode, what they used to call a mental breakdown, after my miscarriage six years ago. I remember one day walking down the street crying my eyes out, my heart pounding so hard that I thought it would burst out of my chest, my hands were clammy and shaking. I could not breathe. I could not get on the bus to get home because I could not handle being that close to people. People were either staring at me…or worse yet, carefully avoiding even glancing in my direction.
I was forty-five years old. I had a fucking Masters degree. I had managed six million dollar charity campaigns, dealt with drunk Hollyweird divas, and planned parties in the country estate of a REAL live Duke. And I could NOT stop what was happening inside my body.
How the fuck can I expect a child to? From that moment, I never try to discipline or punish her for something she cannot control. All I can do is keep her safe, avoid eye contact as much as possible, keep talking/noise to a minimum and wait it out.
I compare these meltdowns to a volcanic eruption. Like I write about in Rings of Fire (Book 2 of the Apocalypse series after The Arrangement), when enough molten magma collects in the reservoir beneath the volcano, it is going to erupt. There is nothing the best scientists in the world can do to stop it. All they can do is move people out of the way and wait it out…sound familiar?
That is what it is REALly like being the Strong Loving Autism Parent (my Facebook group where I stole that meem). Living in the beautiful, tranquil nature of Mount St. Helens, knowing that an active volcano roars just beneath it and that one day it is going to blow, nothing you can do about it. If you spend your life fearing that eruption, then you miss the beauty all around you.
And that title? It is one of those beauties. When people are mean to her, PanKwake will tell them ‘I’m autistic. Deal wif it.’
You may ask what is it that I/we do want if not your ‘advice,’ judgemental attitude or pity? The same thing that I want and fight for as someone who is polyamorous and into the REAL BDSM…ACCEPTANCE. That simple…just to smile and accept that my child’s brain is different. Not disabled. Not weak. Not less than your ‘normal’ child’s. Just fucking DIFFERENT. And that those differences make this world a richer and better place.
Because besides this meem, my other favorite one from that group says:
I could no more spank the autism out of my child than I could slap the stupid out of you.
As I tell everyone…I can handle my child. Actually, I love her autism. I honestly do believe in my heart that autistic/Asperger’s individuals are as Magneto calls them…’the next step in human evolution.’ And I am blessed to have not just PanKwake, but Captain America and two of his children as A-wo/men in my life. No, I can manage my child. What I cannot handle is OTHER PEOPLE.
Don’t pity us…just accept us as different and beautiful and the special gift we are to this fucked up world.