by Lisa Macafee
Word just came out that Governor Newsom is mandating public schools to stay closed until counties are not on watch for COVID-19.
While some of my teacher friends rejoiced because they will not have to be in contact with students, I spent a good long time last night crying.
I understand that COVID-19 presents serious risks and that steps need to be taken to minimize transmission. Our district had planned on a hybrid reopening that I feel would have allowed enough students to stay home to allow for precautions to be implemented.
It bothers me that the state does not seem to realize that many parents will now be endangering their children with no other option. Most of the guides assume that working parents can help their children with schoolwork around their own work hours, which also assumes that their children are over the age of 12 and can safely look after themselves while their parents are working.
“If schools don't reopen, will parents have to choose between jobs and kids?” Many parents don’t have the luxury to be able to quit their job without also losing their home, car, and needing to go on state assistance. So we are then forcing working parents to neglect their children, leaving young children home alone, or sending them to family members, or in very unlucky situations, sending children to un-trusted acquaintances. Rates of child abuse (including sexual abuse) are already rising. They will continue to rise.
Teen Vogue wrote about how “Distance Learning During Coronavirus Worsens Race, Class Inequality in Education”, but people seem unconcerned.
The Los Angeles Time said that “We can’t reopen the economy without child care”, but the economy is reopen for the most part. Being in a capitalist country that is not ready or willing to support those who cannot work in times of distress, we have to work.
I have been working from home. My employer has graciously said that I can work while caring for my kids, but how can I, really? My kids are 3 and 5. They and I are autistic. It has been okay for the last few months because my husband is a teacher and has been on Summer vacation and he has cared for the kids while I’m working. He is going “back” to work in August and will be expected to maintain a rigorous online learning environment, which will take a lot of work to make online learning meaningful for 8th graders.
When we are both working remotely from home, how the hell are we also supposed to care for our kids and ensure their learning? Our kids will be neglected.
We are currently the ones responsible for every single aspect of their growth and development. This is not normal or healthy for kids. Especially autistic kids.
We physically can’t provide speech-language therapy for my son who has communication delays, or occupational therapy for both to work on delays in fine motor control.
We don’t have the energy now to be able to provide all their online schooling needs. When we’re both working full-time with the kids running around in our hair, it’s an impossible situation.
I am already struggling with autistic burnout from too much stimuli. There are too many things happening at once. I can’t keep track of them all. There are too many noises happening from too many devices and too many people needed too many things from me at the same time.
Do I attend my screaming 3 year old who hit his head (again), or my 5 year old who wants apples sliced not whole, or my student on zoom who I am being paid to help? Which one is the most important?
Most nights after putting the kids to bed at 8pm I need to lie down. My body seems to cave in on itself, forcing me to stop. Some nights I can’t even talk to my partner because my brain is all done with peopling. Too much.
Being an autistic parent is hard enough. Being an autistic parent in COVID while working from home with my kids here and the expectation that I should be home-schooling them is impossible. My health is failing. Stupid fibromyalgia is making me unable to function anymore.
Here’s the thing.
I’m one of the lucky ones. I have family I can lean on if I need to and financial stability.
I will be okay, and my kids will not be physically abused. They’ll get way more screen time and way less socio-emotional growth than they should, but they’ll be okay.
Lots of kids won’t be if we don’t have school in Fall.
We need an on-campus option to care for our most vulnerable students.
Not for everybody, but for our students whose parents work and are unable to care for them at home.
For some special education students whose parents are unable to meet the needs of their children by themselves.
We need to think beyond what’s best for our own individual families and think about those most vulnerable.
One last story. When I was a young person, my mother worked about 70 hours per week to pay our bills. My father would come home and be responsible to “watch” me. But, my father was an alcoholic. He would come home, get drunk in the garage, watch TV, and pass out.
I cannot tell you how quickly I found (dangerous) ways to get out of the house. I dated older guys who had cars so I could get out. I started working at 15 to save for a car to get myself out. I started working full-time around 17, just to be out, really. I hung out with anyone who would pick me up and get me out. I had a severe drinking problem from age 15 through college because being home was untenable.
If I didn’t have school at this time, I don’t think I would have made it. Literally. A couple of my teachers gave me a couple of compliments that I built my life around. They may not have meant anything by it. They may have made the remarks offhand. But my life is built around being a “Deep Thinker” (thank you Dawn D’Amore) and being “good at Psychology” (thank you Art Jenkins). Without these two things, I very well could have ended up like some of my other friends. Good friends and good people who are dead.
Protect our kids. All of them. Not just yours. Please.
by Lisa Macafee
I am writing this with a heating pad on my shoulders, having already taken an Aleve (do these things ever work?), and have had a migraine for the last four days running. I have a generalized pain, stiffness, and soreness in my shoulders, upper back, and neck that just doesn’t seem to go away and slowly builds as the day goes on to a migraine. This is Fibromyalgia for me.
The Mayo Clinic says “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” Migraines “can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours to days, and the pain can be so severe that it interferes with your daily activities.”
As far as I can tell, fibro happens most often in autistic individuals. When I was being diagnosed, the Rheumatologist was hemming and hawing over my chart until I mentioned that I was also autistic, to which he concluded quickly that I have fibro. Because apparently these symptoms + autism = fibro. Our neurology seemingly misfires and sends signals of perception down the wrong wires, things get sent off incorrectly, and we have pain and exhaustion instead of noticing that we need to change positions or are cold, for example.
The pain. It’s in my shoulders almost constantly and while normal things like hugs don’t bother me in the slightest, wearing any kind of clothing touching my upper back, neck, and shoulders will 100% result in pain, disorientation, and migraine.
That sounds silly even to me. How could wearing a shirt cause migraines? I don’t know, but what I can tell you is that I’ve started cutting the necklines out of all my shirts and wear them backwards. Today, for example, I was wearing a backwards shirt, but the back wasn’t quite low enough and I started getting pain in my shoulders and neck. I took an Aleve and used a heating pad for 2 hours and cut an extra half inch off my shirt neck and I was able to curtail the pain and not get a migraine.
The problem is that I can’t always do this. At work, I can’t always cut the neck out of my shirt. I’m supposed to dress professionally, after all. What kind of professional wears all their shirts backwards and cuts the backs down to their bra straps with scissors in the restroom? How insane do I sound to you? I sound pretty crazy to myself! If I didn’t live with this, I wouldn’t believe it either.
Fibro-fog is a thing as well. When I am feeling unwell, I get confused and can’t think straight. I don’t have enough spoons or spell slots for basic daily living skills. My cognition gets destroyed by migraines as well. Most questions are met with a “…what?” response making me seem either remarkably unintelligent or uncaring about others.
I have tried almost every prescription and procedure short of jaw reconstruction that I have been offered by the series of doctors, specialists, and experts, all to no avail. Cymbalta helps with pain but caused me to be so fatigued I couldn’t get out of bed. I had acupuncture, which was painful and did nothing to help migraines. I had Botox injections in my shoulders and neck, which, while painful, really didn’t seem to affect migraines. I tried Topomax, which lowered my blood pressure to the point that I passed out in the shower(!). I tried Pamelor and it gave me insomnia so badly that I was getting a migraine every day due to sleep deprivation. I even tried taking Guaifenesin daily and removing all salicylic acid from my diet for a couple months as per the Dr. St. Paul Armand protocol, but that increased my migraines as well. It’s not like I haven’t tried to get better.
I’m currently doing very small amounts of yoga and using the elliptical morning and night because exercise is one of the keys to fighting fibromyalgia. But exercising too much brings on migraines and fibro flare-ups. Lol. Have to find just the right amount. I am the perpetual Goldilocks, but no porridge is “just right”.
I am growing increasingly frightened of my biology. I am having less and less days not requiring Imitrex to knock out the migraine, and I am more often requiring double the dose of Imitrex that I used to need to stop a migraine.
What happens if I don’t take an Imitrex? Eventually the pain and light and sound sensitivity builds to the point that I start vomiting from the pain… which makes the migraine worse, leading to nonstop puking and a visit to urgent care. I try to avoid those. 😉
What else triggers migraines, you ask? Any more alcohol than ½ a drink, too much sugar, not eating regularly, stress, exercise, dehydration, heat, sun, air conditioning, wind, jaw tension, sleeping wrong (on my stomach, side, or not perfectly aligned flat on my back), and more!
“Living” with fibromyalgia is difficult because I don’t “look” sick, much in the same way that I don’t “look” autistic. People doubt what they cannot see.
My kids are disappointed with me when I’m lying on the floor holding a pillow over my eyes and won’t come play with them. My husband gets frustrated that, very often, the childcare falls on him because I can’t process or parent.
My ability to work suffers, or I suffer to work. I take more Imitrex to be able to function at work and fall apart and become nonfunctional when I get home. This is not sustainable. I feel like a train slowly rattling off the track and not being able to stop it.
If I’ve ever come off as bitchy or uninterested, I apologize. I am in pain so often and I mask it so much that sometimes I forget to tell people and then I come off wrong.
I’ma keep fighting, at least fighting seems to be in my genes along with the rest of this crud. I refuse to give up hope. One of the next specialists I see will help me, someday!
by Kai Pretto, July 9th
How many lifetimes have passed
while I wasn’t paying attention?
The sound of voices I have not heard
in years ricochet through the hallways, catch
around my ankles in my sleep. I awake
with familiar feelings in unfamiliar places, the screech
of tires in the middle of the night. Some days
I am unsure how I ended up
thousands of miles from where I started--
how uncertain, how unpredictable
it all has become. I have sloughed off
the skin of who I used to be, the endless
dust of aging. I am peeling off
the layers until I get to the middle:
at the core center
is the solid metal sphere
no amount of meditation can crack--hovers
and bobs and manifests
in violent tumults
crashing long into the night.
I learned to speak before I knew
what words meant, rolling around the sounds
because they were pleasant in my mouth.
I have become astute
at finding the right ones for every mood, every room--
a catalogue of scripts so complex
they look like conversation.
Can you tell me
what it means when someone says they love you
and then they break your heart? When their mouth
is an empty oh and their eyes are wildfires
you will never put out? When their eyes are vernal pools
full of dead shrimp? When their mouth
is a watchtower, a searchlight, a prison?
I am looking for something
warm and round I can hold
in my hands
and call mine. I am searching for the feel
of winter mornings at seven, everything
so hushed and here I am cradled
inside of what has been found.
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.