Invisible Disabilities Are Misunderstood

Growing up in the 80’s, I was educated in “handicap awareness”. My second grade class was visited by a local woman who was vision impaired. She brought her seeing-eye dog and we learned not to pet the dog, because he was working. It was an awakening to realize there were people around me who had an extra level of challenges in their daily life.

Forty years later I’ve had to relearn how to speak and think about different abilities. And I’m learning it from the inside. My own family is heavily impacted by invisible disabilities. I have three autistic kids who could mostly pass as neurotypical. They’re verbal and sociable and to the uninitiated, they might not seem autistic. I wish we could walk around with a placard around our necks announcing our autism!

I can’t tell you how often I’ve thought about putting one of the kids in a wheelchair so people would see us through the proper lense.  You see my “healthy” kids, bouncing around CVS, speaking way too loud and then getting furious over a stubbed toe. That equals “naughty” not “disabled”. I get all kinds of nasty looks for not controlling my children when they are just not wired to interact with the world in the same way as others. That’s their disability.

We are fortunate to qualify for disability parking which is a privilege that I appreciate every single day. I love that hang tag more than birthday cake and a Sephora gift card rolled into one! It means that I can take my boys to the store or a museum and know that we will get from the car to the building safely. And if we need to bail because someone is melting down, we are able to book it out of there.

Today, I was parked at my son’s school in one of the disability spots. I was standing beside my car, looking able-bodied, waiting for my special needs kid to be escorted out by his aide.  A woman idled her car in the lot behind me. She yelled to me,

“Excuse me! Do you have a disability tag?”

“Yup! I do!”

“Because it doesn’t look like you have one!”

Really lady?  Can you see the huge yellow window decal that reads “Special Needs Children on Board” or the equally obvious “Autism Society” magnet?

Me, again, forcing a grin, “I have a tag!”

A moment later, someone left a spot next to me and this woman parked. I watched her get out and she shot me a snarly glare. She had a cane. Her need for the special parking was obvious. And I’m betting that irritated look on her face means she’s thinking she deserved that spot more than we did.

I wish that I had told her that earlier this year, I proposed that the school should provide additional parking for the disabled members of the school community and I won! There’s now an EXTRA blue space for all of us. Because of my pushy emails. You’re welcome!

My own struggle with auto-immune disease is a tale for another day, but I have come to think of myself as having a disability. Much of the time you see me, you’d never guess. Yet there are many days when I am in bed or shuffling around in pain. Is my disability less than someone who is in a wheelchair or missing an arm? Or who is autistic? 

I don’t think one’s disability is like that awful pain scale we’re all asked about at the hospital.  

Please rate your disability on a scale of 1 to 10, 1 being barely disabled and 10 being the most disabled you’ve ever felt in your life.

Speaking for my tribe of invisibly disabled people, we slide up and down that scale, but we’re always on it. Our lives are impacted and there’s an innate, daily struggle that makes typical situations some exponent more difficult.  

We can’t always expect people to treat us with the sensitivity we need. But I think there is a trend towards greater compassion. I see it with the increased presence of emotional support dogs. And with the new ADA policies that allow people with challenges the chance to enjoy community attractions.

I hope that woman from the parking lot will see my car again tomorrow and think about why I must be parked there. That maybe our lives are more similar than she assumed. Also, I’m hoping that I don’t have a new enemy because I am already flush, thank you very much.

Dumbest Parenting Advice Chart Topper

I’m live-streaming fury over the ridiculous advice people give me about raising my autistic kids.

I don’t expect other people to understand the shit show that is parenting three autistic kids.

Really, any parent gets dumb advice. I don’t know, maybe it’s easier for me in this one regard because I’ve given myself the pass to say STFU. Move along.

So how do I survive? I am the Queen of Pushing Back.

Example: A child psychiatrist who knows my heavily impacted eldest child, suggested a type of in-home therapy called ABA for my middle kid.

I do not like ABA. Every damn person I meet, including the dental hygienist who has a cousin whose kid is autistic, says how wonderful it is! Well, we’ve tried it and it doesn’t work for my family. (That’s really controversial in the autism community to be Anti-ABA. Suck it.)

Here’s me pushing back:

Sorry Dr, we’ve tried it and it just stirs everyone up and makes chaos and I’m not signing on for more chaos.

“Well imagine”, he says, “if you only had ONE child with autism how it would be helpful.”

Hmm, in this alternate universe, do I also have a pony and mermaid hair? That absurdity is not worth a single second of my time because I am never going to have ONE autistic child. Stop right there. Next suggestion!

Doctors, teachers, therapists, swim instructors, mom I met at the hair salon…thank you for your entry into Most Ridiculous Words Heard list. I’m locking down this conversation.

The best advice I have to give is to never sign anything at the IEP meeting, don’t feel guilty if you have to say “No” because you feel too worn out, and say “Yes” as much as you can to your little people.

I came across the cutest cross stitch on Etsy:

You don’t have to explain yourself to idiots.

You’re not the Fuckface whisperer.

I think I’m going to buy it and wear it as a necklace.

I hate stroller fitness classes

I see you mommies, with your SUV strollers and hydro flasks, convening in the most public of venues, stretching lycra clad limbs, while your tiny charges sit calmly and silently. Maybe if my own kids would have ever deigned to allow me the same personal freedom then I wouldn’t think of you as inglorious bitches.

My kids would wail and screech when I was moving around the park or the mall. There would be no stopping to stretch or chat. Even that one year I joined a gym with childcare, my parent buzzer was going off before I could even get logged into the jogging program on the treadmill.

“Cynthia, your kid has been crying his head off. Please get him out of here before the other babies realize this is a choice and follow suit.”

Stroller class moms are the adult equivalent of cheerleaders. They have lots of friends and better butts than I do… because they are allowed the chance to participate in fun fitness while I was only ever sweating from anxiety, trying to settle my kid down even one notch from hysterical.

Mom who is wearing her baby while still trying to take the class, you get a pass!

I did have two kids who tolerated my adult choices, but only when I wore their little faces smooshed into my breasts. And I wasn’t going to be so foolish as to use those moments working out! Scratch that. I did count walking the mall between stores that sold only grown-up clothes as aerobic. It was still a solitary event, however, as I had made a name for myself as the one with the difficult kids.

It’s been a year since I had a child small enough to ride in a stroller but I still give you a glare as I walk past your overtly public display of healthy parenting.

Just like with the cheerleaders, we will never be friends.

The CCPA is making it so hard to do my online speed shopping

I’m so lucky to live in California, on the Left Coast, where my online privacy is now protected by law. The California Consumer Privacy Act is in full effect and it’s sort of terrifying me to realize my paranoia about the sinister inter-web has been valid.

Now every website I visit has a giant pop up banner announcing its compliance with the law. And where I formerly clicked away (yes, yes, cookies, got it) I’m now scrolling down to opt out of allowing retailers and glamor blogs alike from selling my private details.

The verbage on each website confesses that they’ve been harvesting my data for sale to third parties.

Since I am a California resident, they will offer me the chance to opt out of this data collection/sale, everything from global location to employment history and, this is what really bothers me, “inferences drawn about your preferences”.

What inferences and which preferences? All imaginable combinations, I’m sure.

My sneaker shopping has been affording the dark web inferences about my sexuality? My blog trips, inferences re: politics? Good grief, I can only imagine how my IG clicks are painting me!

A dozen years ago I worked at a museum and Development (with a big, sinister D) told me that I needed to create a full profile for each person who bought a ticket. Address, email, the whole enchilada.

Why? The indignant visitors asked.

For “security” purposes, I was told to answer.

Soto voce

It was so we could sell that information to a fellow museum.

Scandalous and invasive, you betcha! Now, we just clatter and thumb away, ticking off whichever boxes gets us the coupon, subscription or shorteralls of our dreams.

In 2019, I knew that my email address did not only equal a 10% coupon off white hot denim looks! I knew I’d be getting spam forever. I didn’t really care because I didn’t think I had any choice. Not if it meant getting to the good stuff faster! Just get me my advice about hydrolysed collagen powers and the scoop on Megan and Harry.

Two months into 2020 and I think we all understand that anything we choose to opt out of is probably being harvested in another way.

I am wholeheartedly half-assing everything.

I have it in my mind that I need to do all these things to be the perfect person/woman/mother. I’m not supposed to be trying to be perfect. All those mindfulness lunatics would tell me to breathe and be present. I just can’t do it any other way. It’s my neurosis or my upbringing, but in my perverted mind there’s an ideal way to do each thing in this life and I’m trying to hit that mark.

This in no way should suggest that what results is perfect. I have actually dropped the bar really low. When I was a free agent, I would have never left the house without nail polish. My standards slipped a lot lower with my first kid. Then they slopped to just barely keeping my head above water with three kids. Add the fact that I have several auto immune diseases that zap my strength, and I’m choking as I squeak out my most serious obligations, forget personal grooming!

Women are tasked with being the cruise directors in a family. A ready example is the exchange of seasonal cards. Did you get a holiday card? Oh yes you did, cuz I’m a nut and I would not have been able to sleep until they went out the door. Was it a Pinterest-worthy backdrop featuring five people looking happy about life? Hell no! Did I slash the recipient list? Yup, sorry second tier family members. But I could check it off the list and feel good about life for a day.

My perfectionism creeps up almost immediately after I finish one thing. And this is why I have adopted Cynthia’s half-assed approach to being her best self.

Step 1. Do you see you beautiful vision board? Throw a bucket of Vaseline on that, blurring it.

Step 2. What we have now is my “Smokey Eye” approach. It’s intentionally messy to disguise f*ck ups. Think, “understyled for that lived in vibe”. So, feel free to have the best intentions but stop when you’re too exhausted or stressed and declare GOOD ENOUGH!

Step 3. Find something about what you’ve done, accidentally, and declare it genius. Now you have something a normal person can achieve!

Let’s see this play out in real time. Last night after the typical dinner of trying to keep everyone seated and ingest most of the food before them, I declared it time to bang out those school Valentine’s Day cards. Naturally, I had spent a couple of hours on Amazon, selecting adorable yet affordable goodies to gift with the cards. Because in my school district, it’s like mini-Christmas with the schwag the kids come home with.

Remember, we are trying to keep up but not worry about truly competing with these nut job super moms who make cookies of each child’s initial. Really?!

Step 1. Envision the cellophane baggie with red and pink ribbon curls. Grab that blurring tool and smear it around until you have the baggie that’s smaller than you thought it was when you ordered it. And realize that you’re going to have to tape these puppies closed because hunting for ribbon upstairs means the hooligans will be left unattended and will find the TV remote.

Step 2. Have each child sign their name and select a goodie for the bag. Explain more than 5 times that the choice is one goodie per friend and no, we’re not eating candy or playing with bubbles before bedtime. Wonder why you thought giving choices was a good idea.

Step 3. Notice that the ink didn’t dry and the names are smudgy and that the 4 year old has signed his name on the TO: line. Oh, how charming and authentic, you decide!

Half-assed Valentine’s are done! And no, I did not volunteer to help with the class party only to cancel the day before because someone is sick/acting out/has an emergency team meeting/I’m exhausted. That craziness is not for me. Not this year, anyways.

Do you want the fake answer or the truth?

Holidays bring out the worst in me. National, religious, Hallmark, school… these are not fun and carefree days for me.

The heightened expectation to be cheerful and joyous is crushing for a person who is struggling with the regular days! I have a family that is heavily impacted by special needs. Plus I have my own battle with anxiety and health issues. It’s a lot to get everyone fed and groomed to even leave the house. Add anything extra and I am sizzling with stress.

When I am asked by anyone, family, friends, or acquaintances, “How are you?” I have to decide what kind of response does this person really want?

Do you want the lie or do you really want to know how I am doing?

Even those people who love me are probably bummed out by the real answer, “We are struggling.”

I don’t want to make you feel uncomfortable, but I feel so alone and cranky and yes, depressed by your happiness. Your plans for school vacation or a party make me want to crawl into bed and put the pillow over my head.

Hey, Cyn, how’s it going?

Here is the real answer.

My kids are autistic and I just want everyone to be emotionally regulated for one hour.

I have a child who is anxious and sad because he doesn’t have even one friend.

Our kids have a team, a literal team, of teachers and therapists because they can’t safely get through one school day without them.

I got a note from school that my child has broken another window.

There are only 5 foods my kids eat so every snack or meal is a battle of wills.

We don’t have any friends because someone is always screaming or yelling shocking words because they don’t understand how to be socially appropriate.

My kids are going to be afraid of the noise or overstimulated by that party, but thanks for inviting us.

Your happy neuro-typical family makes me want to throw something across the kitchen.

We are the weirdest people wherever we go.

Here’s my fake answer.

Oh, we’re keeping busy! Yup, doing well! Aren’t the kids big? (quickly pivot the conversation back to the other person) How are you!? (painfully pasted on smile)

The lie is exhausting and the truth is too much information.

Yeah, I friggin’ work!

Do you work?

I stay home with my kids, so I hate this question. I hate it on school forms, applications, and when making chit chat. Because I. Am. Working.

I have three autistic kids.

“Is that even possible!?”

I can hear you thinking it. I assure you, I would not joke about such a thing.

Gorgeous boys, too!

“OMG! THREE BOYS?!”

Let’s not get sidetracked. Yes, three special, smart, loud boys. And they each have a team of therapists, teachers, aides, social workers, doctors, specialists, and van drivers. Juggling their lives is my work.

I also manage a healthy amount of panic attacks, I strive for at least 4 per week, worrying if I’m a good mom/person. Maybe the middle one should be in music therapy? Did I call back the Y about getting the behavior specialist her companion membership badge? We’re out of bagels, that’s going to be a crisis!

In rare moments, I experience the pride of successfully wrangling these little Fellas. Their hearts are so fragile, bruised by the struggles that come along with their neuro-diversity. And everyday, I manage to inject kindness into their lives. Not, like, all the time. I still yell. A lot.

We go to museums and out to (crappy) restaurants and we play soccer loudly at the neighborhood park. Add all the loving corrections and the times I bite my tongue when I want to say, “My life is hard, too!” I think I am crushing it at Work.

I have recently been encouraged in my return to writing. I have been blogging for well over a decade. First a very snarky blog, single-gal rants against the establishment, and then, still snarky, my mom journey, recording the events and quirks of parenting and posting loads of cute kid pictures.

This is going to be a mixed up effort to help that pre-mom woman resurface. It’s more work! But so far I am really enjoying it. I hope you do as well.