Sometimes I live in a weird place of denial, a place where my granddaughter’s autism is “high-functioning” and not a problem at all.
I tell myself that it’s not a problem that I have had another human, sometimes two or three humans and several pets, physically touching me all day and I will be fine once I’ve had a good night’s sleep without anything touching me.
I tell myself that I honestly don’t mind the hours spent listening to her say the same two or three words/phrases/sentences over and over again the entire time we are in the car or I’m trying to watch T.V., or trying to concentrate on cooking or writing. At least she’s still using her words.
I tell myself that the other kids are blowing things out of proportion when they complain that I never have time for them because I spend all my time with her.
I tell myself that none of them see what I see when I say everything is fine. Because what I see is that…
It could be worse.
She could stop communicating again. Sometimes she already does. At least sometimes she speaks to me and tells me what is inside her beautiful brain.
She could stop eating again. Sometimes she will eat dinner. Not usually, though. Her eating habits are honestly bad, but occasionally she eats good stuff, like watermelon and apples. I think most of her bad eating habits are my fault because I’m so exhausted all the time, I have no energy for fruit prep and constant restocking.
She could go back to not sleeping. So many nights spent on the couch, barely drifting between conscious and unconscious, trying to keep alert enough to stop her from getting into trouble, waking someone else, or hurting herself.
It could be worse.
But how much worse am I willing to tolerate? Will this insanity go on forever, constantly elevating in severity until what? She breaks the TV, hurts an animal, hurts herself, or hurts me? When does it end?
Some of you might think, why don’t you ask for help?
I have. We are already part of several programs including Children’s Long-Term Waiver Program in WI and Caravel ABA Therapy. We’ve done Birth-to-Three, Music Therapy, etc. We’re on waiting lists. We discussed programs. We’ve talked and talked and talked about programs that can help us.
Talking about ways to help isn’t help. Helping is help. I could sign up for program waitlists. The program coordinators are supposed to remove that burden. But if they don’t check in regularly, we sit in “wait-list limbo” for years waiting for help. I’d rather move on to a different service that is available NOW than wait for a specific program that won’t be needed by the time we get a phone call.
Telling me in a comfortable office with no children around on a Thursday morning how to handle breakdowns doesn’t do anything for my brain on Friday night when it’s bedtime, everyone is exhausted, and the child is furious that she doesn’t have school the next morning so she’s screaming, biting, throwing things, and generally making everyone want to run away. It doesn’t register in my brain until 3 am when I’ve cried all night after getting her to sleep…finally… only for her to climb in bed with me an hour later, crying and refusing to go back to sleep.
Giving me a handout of instructions (that I had to beg for in the first place) is useless to me when I immediately lose it in the car because some emergency demands my attention and my ADHD/PTSD/DID brain decided it wasn’t worth remembering even though we’ve been crying at night over a need for the exact skills listed on the sheets.
Telling me you understand cuz you’ve got a kiddo with the same problem and it’s so hard sometimes doesn’t help when you clearly have things under control enough to make it to work consistently enough to keep a government job and I can’t even always make it out of my pajamas and into the shower in the same day because I am literally serving the needs of others from the second another pair of eyes opens in the house to when I cannot keep my eyes open any longer and preserving their lives and the peace is more important than my own needs.
What I need is someone who can come into my home and hang out with my family, really stick around for a long time. Past the time when the kids start to get bored with “a new person” in the house. Past the time when the kids have lost their patience with not having my complete attention. Past the time when dinner is late and someone is shooting Nerf darts in the house and dad is cranky cuz he didn’t get enough sleep because of the chaos in the house. Past the time when mom has heard “is there something in my nose?” for the thousandth time and the preschooler has taken off her clothes and is running around with yet another mysterious marker. Past the time when we tried to enjoy a few minutes together in the living room to calm everyone down and someone turns on a social media video and all hell breaks loose as this mama’s last nerve has just been flicked and everyone starts screaming. By the time the dust settles, at least one person has cried, two more will cry over it later, and nobody is happy.
That’s what I want help with. How do we fix this without losing the people we love the most?
How do I help my little girl when I can see the words on her lips but she can’t get them out so she screams and throws things?
How do I help my pre-teen understand that he doesn’t always have to hate me because I’m trying very hard but some of his demands are unreasonable and terrible for him?
How do I help myself remember that they are just children and it’s not their fault that they can’t manage their emotions well? I haven’t taught them better ways because I myself am bad at coping with things that upset my schedule or routine. I also want to cry and scream and throw things but I learned a long time ago that behaving like that has serious consequences and I learned to mask early on to protect myself, breaking myself off into chunks that created a load I was capable of carrying.
Maybe our situation is unique because of the combination of “excuses” we use to justify our inability to cope with our situation.
When the household has enough diagnosis letters to play a full game of Scrabble, even ideal conditions would be difficult to manage. Add a house size of about 900 square feet, one bathroom, a galley-style kitchen, and barely three bedrooms with several animals, borderline hoarding tendencies, and it starts to get messy. Add a bunch of family drama and a string of recent family losses that have been devastating but make sure you remember that nobody has any time to process a trauma before another is happening and you end up about where we are.
But here’s the thing. I don’t think our family is uniquely messed up. I think everyone is struggling with their own versions of all of these things to some degree. Yeah, it would be great if my kids didn’t need SO MUCH of my time and energy. It would be great if I had more time to write, market myself as a writer, find freelance gigs, etc. But it would just be some other emergency that demanded my attention.
I was not born into a calm family. I was not born to calm people. My father was calm at the end and the years leading up to it. But when I was younger, my father wasn’t calm. He was emotional, passionate, and sometimes quick to anger. Calm only sometimes described him. Nobody, not my mother, aunts, uncles, cousins, none of them were “calm” people. Perhaps it is my memories that were not calm. But, I digress.
Autism is exhausting. It’s mind-numbing, frustrating, time-consuming, and soul-crushing.
But it’s also beautiful. It’s a rare day that my son can’t name an exact year, make, and model of random vehicles out in public. When shit hits the fan, my girl will always trust me to do the right thing with her, to protect her even from herself, and to help her get through whatever she’s going through, whether we fix something broken or just talk about why we felt the way we did.
Some days are so hard. The repetition, the stimming, the screaming, the violence, the abuse, the inability to help, the utter powerlessness of it all.
Those are the days we need to talk about more. We need to talk beyond memes shared on social media with a million likes but no conversations. We need to talk about the utter loneliness that can be felt when it seems like nobody else truly understands how out of control life can feel on the bad days. How the thoughts of maybe not waking up tomorrow can make us feel guilty and awful and inadequate even though all we really want is some rest. Just a little reprieve from the anger and aggression and sadness and hopelessness.
We need to talk about how the role spouses play in the day-to-day chaos. We need to ask for help and not feel guilty for burdening someone else who is also equally responsible for the care of the children they helped bring into the world. And if we don’t have spouses, we need to talk about our villages. Our friends, our playdate partners, our teachers and daycare providers, our aunts and uncles, cousins and siblings, neighbors down the street who check on us once in a while.
When I was a kid, everyone had a village and a lot of them overlapped. I spent a dozen sick days home from school with everyone my family knew. My parents would call everyone they knew if there was a need. My friend’s parents did the same. Small town, but that doesn’t matter. We need the village.
Especially when our needs seem greater than those of others. We need to grow our village to match our needs. That way, when our needs have been met and our situation is stable, we can meet someone else’s needs. This is how the chain stays in motion. When we stop the chain, the village breaks apart.
I’ve found myself making excuses for not having a village, but I do have one. It’s just very small because I don’t trust people.
The truth of it now is that it’s been so long since I connected with anyone outside of my small village that wasn’t being paid to talk to me, that I’m not even sure how to do it anymore. Because I expect people to behave how my children behave because I spend all my time with them.
I expect people to be mad at me when I tell them no. I prepare for tantrums, screaming, throwing, and maybe flying food or liquid. Stains, messes, chores. It’s better not to bother talking to people in the first place. Then I can control the mess.
Caring for my kiddos is a full-time job that pays nothing and takes endless resources from me on a constant basis. I am compensated in the little moments. When I hear my boy tell his friends to not say things that he knows triggers me when he’s gaming and his friends are getting a little too graphic (I can’t stomach gore – sidenote teenage boys can be super gross!). When my girl won’t let anyone else console her because I am her safe person. When the oldest opens up to me even though it seems like he hates me and doesn’t talk to anyone. When we finally get everyone in a good place so we have a movie night with popcorn and nobody cries or screams but everyone goes to bed a bit unhappy that it had to end because it was perfect for a moment in time.
At its core, autism is exhausting for me. If I’m not actively caring for my kiddos, I’m thinking about their care, worrying about their situations, or coming up with ways to make things easier/better/more efficient/less traumatic.
I tell myself every single night that tomorrow is another chance to get it right. I know the odds are severely stacked against us, but I’m gonna try anyway.
As I finish up another in what seems like an endless stream of bad days, I am trying to reflect on how we get up each day and keep moving forward, how we continue to trust the programs that are currently failing us, and how we survive until help arrives.
Obviously, we will reach a point where something has to give. Or we’ll level up…and reach a new level of lowering our standards, accepting things we don’t want to accept, and pushing through no matter what.
Until Next Time,
Cathy Marie Bown
Cathy Marie Bown 