Awareness and Acceptance

It’s April 30th. The end of Autism Awareness Month. Or is it Autism Acceptance Month now? Both? I can’t keep up with the lingo and rationales. ;)

Usually, I’m posting lots of positivity on social media. Meet my family. Learn our story. Walk with us, laugh with us, check out our amazing girl. Donate to her school. Fundraise in the name of awareness/acceptance, research and hope.

This year, I’m tired. So fucking tired.

I actually thought of writing something inspiring and hopeful today. I’m always full of fun and hilarious stories, always trying to put a lighthearted spin on our situation. Chuckling through times of exhaustion, terror and heartbreak. Waiting with bated breath while my friends and family say their usual replies. I don’t know how you do it. How can you come to work each day so cheerful? If I were you, I would have snapped by now. You should write a book, because no one would believe these stories. God bless you. You’re a great mom. The hubris isn’t lost on me, and sometimes I drink up the platitudes because they’re all I have in those moments.

But today, I don’t feel any of these things. I don’t feel cheerful, and I certainly don’t feel like a great mom. I am definitely on the verge of snapping.

You see, autism can be amazing. Watching the world through my daughter’s eyes, wondering what her hopes and dreams and thoughts and desires are; molding myself to her world. Figuring out the pieces to her puzzle and how they all fit into place. Trying to do right by her, to keep her happy. Giggling with her over bubbles and beads, dancing with her, playing with play doh and watching endless hours of Handy Manny, Willy Wonka, and Elf… all basic necessities in our world to keep our girl serene.

This morning, when she spit in my face because we couldn’t go swimming (because it’s April in Buffalo) and then proceeded to scratch, pinch, kick and hit me for a half an hour because I could not give in to this wish, to this blatant command, the dark side of autism came roaring back. It’s never far away, as we tiptoe through her moods and emotions, wondering when she will explode and for which reason. The dark side of autism where my daughter is almost fifteen, and after thirteen years of intensive therapies, intensive medications, and so many intensive interventions, she is the child that throws tantrums. That kicks holes in walls. That hit a window so hard that she broke her finger. That has to be removed from her peers at school for fear of injuring them. That has had countless bus write ups, because hell, if I was her bus driver I wouldn’t want to get spit on either. That injured a staff member at her school and sent her to the hospital. That injured her little sister in the car because we went to Wendy’s instead of McDonald’s (even after going over her picture schedule countless times). That has become food obsessed because we’ve been able to do very little during this pandemic. That won’t wear a mask for long periods of time. That literally just split my husband’s eyebrow open by whipping her device at his head. That is now bigger and stronger than me, and I worry about how we will be able to continue this way, and for how long.

Guilt. I’ve felt so much guilt this year. I’ve found ways to pass the time during the pandemic. I have work and friends and a spouse, and I can commiserate and joke and convey my thoughts and emotions. I can read amazing books, and write somewhat coherent blog posts. My daughter’s world is much narrower. Her world is what we make of it for her. We’ve built routines, only to have them destroyed. She loves amusement parks, baseball games, beaches and pools, most of which we haven’t been able to give her, especially routinely. Walks upset her, and car rides are stressful for her unless we are traveling the same routes and following the same routines, down to the moment I put the turn signal on or how long I am waiting at a stoplight. A second too long, and no bueno. So we’ve been hermits this year, which I know has affected her. The lack of daily routine has affected her. My inability to parent her the way she needs to be parented has affected her.

I think about all of the other special needs caregivers out there like me. All of you who are surviving this pandemic, but barely. Who, like me, can’t believe we’ve managed for over a year, with limited school, limited face-to-face therapies, limited respite. Who are desperate, who want to try everything, and yet, are so exhausted that weeks go by and phone calls go unreturned and help gets pushed away because we are tired. (Or broke, and can’t afford the cost of extra interventions.) Or, when we do talk to doctors or coordinators or specialists or teachers, we are so tired of saying the same things over and over again, only to tweak, adjust, try something new that simply doesn’t work. It grates on the edges of our sanity, and sometimes it’s better to just be. To deal with it, no matter how rough the waters.

I promise I’ll be back to my much more positive self in no time. My daughter will look at me and giggle, and I’ll momentarily forget about the stressors and bruises (mine, not hers) and general worry. She’ll have a great day at school and we’ll enjoy the hell out of that win. There are definitely lots of things about autism that we celebrate. She’s our constant teacher about the true necessities for a meaningful life. Parenting a special needs child has been our greatest challenge, but also our greatest reward. Our family wouldn’t have met the most amazing people that are now in our lives forever. We are irrevocably changed for the better.

However, the reason I’m posting this is to shine a light on the negative feelings that we should feel without fear of being misunderstood or called out. That, as caregivers, we can admit that we are anxious and frustrated, and are simply trying to get through some days without bursting into tears. We need to vent and have non-judgmental places to voice our struggles and share our discontent. Because, let’s be real here, we didn’t sign up for this. We were thrust into the waves without a life vest, and some days are a struggle to stay afloat. (Sorry, bad metaphor- I’m tired!) We have had to mourn so much. There has to be a place for these feelings so we can deal with them and move on to conquer each new day.

To the moms, dads, siblings, and caregivers out there: I see you. Let us not only be aware and accepting of autism and disabilities in general, but also of our own mental health.