April 2, 2023
This month is autism awareness month. I wish it was titled acceptance instead and hope for the day that this comes.
Will there be a news announcement asking people to aim for basic human decency and kindness? Is there a saturation point of knowledge where an awareness day transitions to people just not sucking as much?
There are those in the autism community who take issue with parents and caregivers like myself sharing about their experiences with parenting those on the spectrum. I respect their point of view that neurotypical people are not the experts on neurodivergence and the experience of being autistic, they’re right. Which is why I don’t think I’ll ever truly understand what it’s like to be my kids because I’m not them, I’m not a kid anymore, and I’m not autistic. Yet I think it’s important to share about families like ours so that it helps others feel accepted and seen or find the courage to pursue being diagnosed. For others, sharing our stories help them acclimate to our reality of living with neurodivergence in hopes that they will accept those on the spectrum.
Here’s my view on autism, I don’t have it and there are moments with my kids where I’m looking in from the outside on a perspective of the world that is foreign to me. Much like the feeling my children have when they are surrounded by neurotypical peers. Sometimes I get glimpses of what my children’s internal world might be like but I’ll never know how it feels to be overwhelmed by the color yellow or the need to spin for hours at a time. Why going over bridges is something they could endlessly do just as much as lining up items for hours at a time. Or how rolling objects are magic to my son as much as paint is to my daughter. There’s never enough marbles or tubes of paint in our house. Just ask the woman who has a back up gallon jug of glue and emergency toy cars stashed around the house.
There are moments when I see the awe in their face at the wonder of a commonly overlooked item that is magical to them; it fills me with equal measures of love and dread. It reminds me of their guileless vulnerability and expansive kindness. I know that they’ve been judged and bullied for the things about them that make them so wonderful to me yet a target of derision to others.
I love when they share these views of the world with me. Moments that they verbalize something in a way that I’ve never heard before. As my son put it, “We have a different sort of listening.”
I can only speak for myself when I say that I write about my life so that others that can relate feel less alone in parenting kids on the spectrum like me. It’s rare that I write at all anymore. There are many days that I write simply in my head and never put fingers to keys but when I do it is simply a message in a bottle tossed into the proverbial sea of the internet. I’m not expecting a response. Only hoping that it might help someone feeling as isolated as myself in that moment realize that they don’t have to be. That there are others that can empathize with their situation and won’t judge them for wanting compassion.
They’ve been bullied, excluded, taunted, and learned that they were different than others many times over but we talk about these moments and I remind them how special they are. That the label of weirdness is to be celebrated. So we do. For instance my daughter asked the other day why a woman and her children were staring at us. I responded, “They’re trying to learn how to have a good time,” both of my kids laughed, “Be sure to wave darlings!” Which we did.
But the memory of these slights linger and the sting doesn’t leave them. They enter new activities with trepidation and anxiety over how they’ll be treated. I try to bolster them with our motto of, “See who you’ll like, not who might like you…”
We encourage each other and I try to understand how they view the world every day so I can do better as their mother. But I would be lying if I said it was easy or that there weren’t moments where I wish that it was because, after all, it’s parenting. I feared that I would be a bad mother when I was first pregnant with my daughter and I fear it still at moments.
My kids are halfway through their childhood and I feel just as alone as the day I brought them home. Such is modern motherhood. Where you can never do enough and there will always be someone to tell you so. This is multiplied by the reality of parenting children with extra needs and even more so when as a parent you have disabilities yourself.
The pressure to keep up with what is needed starts to isolate you just by circumstance when you can’t take your eyes off your child for a moment yet you’re tied to your phone to try and find any help for them or yourself.
Even when I’ve tried to create a support network for myself as a caregiver but it isn’t sustainable in any practical way because the collective needs of our family out pace any true resources or help. This is true for many of my fellow parents of children with special needs. There’s barely enough time in the day to juggle advocating with attending the appointments that you’ve struggled to get for your family let alone accept the help that might be offered but with conditions and expectations that can’t be met.
Classes that claim to accommodate but don’t welcome you. Social clubs that pronounce to be inclusive but the members go out of their way to make your child uncomfortable or excluded. Friends and family that mean well but expect you to meet them halfway, literally or figuratively, when I can’t manage to get out of bed or across town with days full of different appointments for doctors and therapists on the calendar ahead of me.
Yet no matter how much you research, lectures you attend, or Zoom parent classes you sit through; there will always be those that judge your choices who will never understand what the life of a caregiver and parent is like. That quickly becomes apparent when you find yourself needing to homeschool your children because they’ve been discluded based on needs and income. I can’t risk their mental health by sending them to the public schools in our area and I can’t afford to send them to a school that has the training to support them.
I wish there was a school for either of my children where they could be safe and feel successful but it doesn’t exist. On paper, I am a disabled mother raising and homeschooling two autistic children. Exhaustion doesn’t encompass the mental workload and worries of my day. This isn’t a pity party because I’m not asking for sympathy. My “cup” doesn’t need refilling because it’s been cracked for years and no amount of self-care can compensate for working around the clock. Even a few hours of rest isn’t effective when just existing with my health issues is draining.
People offer help or want to be involved in my life yet I can’t reciprocate the way they want me to as I did in the past. Whether it’s my health, the constant pain, or my family’s needs that obstruct me from doing so. I don’t blame them, I just miss my old self or being accepted by others. Being a mom of kids with special needs means accepting not just the diagnosis of your child but that no one will understand what your existence is like. They’ll make the same demands upon you without acknowledging the additional workload that you carry as mother of children with autism. I visualize someone spinning plates and a heckler off stage asking them to spin one more.
What’s the default response our society has to caregivers, primarily women, crying out for help?
“Do you have a counselor?” The real statement being, “No one but a counselor is willing to listen to you…”
“Have you tried “self care”?…” They might as well slap you.
“You have to fill your cup first…”
“Have you tried creating a support network for yourself?”
There’s a reoccurring nightmare that I have of trying to mend a net. A very obvious metaphorical taunt from my subconscious. Here I am, no knowledge of boats or fishing, weaving rope in and out of these holes only to have it bind around my arms and every attempt just creates more piles of chaos that won’t bind together in any sensical fashion.
I woke the next day from the nightmare and asked my son if he had good dreams the night before. He knitted his eyebrows together and gave me his characteristic, “Of course!”
He hugged me and added, “I raced cars and I was inside my marble run with Cleo and I ate cupcakes.” (Cleo is his cat.)
“Did you eat cupcakes while you raced?”
“No, mama! That’s silly, “ he slapped his forehead, “My cat would’ve had to drive.”