‘I was late to work today, again. Holding back tears, visibly shaking after a coworker belittled and broke down whatever piece of soul I had left that.’: Special needs mom’s plea for kindness

“Dear Co-Worker of a Typically Developing Child:

I am writing this because I hope this helps someone. I hope this teaches empathy to at least one person. I hope another mom, another special needs mom, can be spared sitting in a work meeting holding back tears, while visibly shaking, after a coworker belittles and breaks down whatever piece of soul is left that day. Because some days – it’s not much.

Life with Autism is different for everyone. My son is nothing short of amazing. He has an old soul that is pure and genuine. He endlessly and tirelessly tries to navigate a world that wasn’t designed for him. A world where he constantly doesn’t quite fit in but still tries his best, none the less.

However, Autism, and life with Autism is just as ugly as it is beautiful. For me – every morning is hell. My son is angry until his medicine kicks in. I rush to get ready and get his siblings ready before I wake him up. A fruitless attempt to shield them from the mass destruction and chaos and anger of him (just) waking up. I scramble to create a space where he can be irate alone while I am dressing 2 little kids. It’s an elaborate game I have (yet) to completely master.

Naive. Maybe. But, always optimistic, I really thought I (kind of) had it all together. My life mantra consisted of drop everyone off, most days cry in the car during my commute, do my makeup in the parking lot at work, head inside work repeating an off key version of ‘a cover girl doesn’t cry after her face is made’ or, sometimes even ‘big girls don’t cry’ in my head. Over and over. A fake it until you make it type thing.

Recently, somewhere along the way. And, honestly, I’m not sure where. But, you, a coworker decided that my son was causing a nuisance to our work environment. That my being late or leaving early or whatever the case may be was affecting you in some way. Or, at the very least obviously annoying you.

Yes, I was late to work today, again. What you don’t know, even though both supervisors did, was I spent my morning touring the third, yes third, potential school for my son. He has missed more school than he has attended this year. Actually for 3-years in a row, now. That is not okay.

School. Every child in America is ‘guaranteed placement in the least restrictive educational setting’. I half chuckle and half want to cry just writing that. There are too many nights to remember. The sleepless nights spent on the internet, searching for a school, any school that would fit my son. Touring schools is an exhausting and timely process. I can’t even list how many schools I have walked into and knew right away, nope, this one won’t work. Or, how many schools I have walked into and fell in love with. Only to be told that they can’t support my son’s IEP. If your child goes to your local public school and is educated and safe – you have no idea how blessed, you are.

I’m sure you also noticed that the week prior I missed a regional staff meeting at work. It was a really important meeting. I should have been there. Instead, I was in about hour-24 of sitting in crisis with my son. By that point I had been awake for 48 hours straight, had police contact twice, DYFS (division youth family services) contact multiple times and been back and forth to a hospital 3 times (2 different hospitals).

Crisis and children in crisis are a really different experience. It’s a world that rarely has a good outcome. Watching your child unable to control their emotions to such an extent that they are not safe is hell on earth. Emergently leaving your other children and sitting in a hospital for hours upon hours that turns into days upon days is horrific. Knowing that your child is better and safe but being unable to take them home, because a psychiatrist has not cleared them, is awful. Made worse by the lack of psychiatrist and painfully long wait times. A world where if you have a private room, you’re a lucky one. On the worst days you’re just accompanying one of the many children in grey paper clothes hurdled together in a giant room of crisis observation. On the absolute worst of worst days, you’re next to an older man peeing all over the room or an addict withdrawing and screaming in pain and fear.

I would have much rather been eating bagels (my favorite part) at the staff meeting. Trust me.

I pray you never experience any of this. I pray your heart is protected from the pain of watching your child suffer day in and day out with no real way to help. I pray your loved one never lives in a world that was not quite designed for them.

You see by all accounts I am a well-respected, educated, knowledgeable professional. I went to school for almost a decade. I have a lot invested and riding on this career thing. Every program I enter – every story I hear – more often than not – I think of my son and what I would want for my child.

We use our paid time off differently. You go on amazing vacations. That’s awesome. Really. Most of my paid time off from work goes to my child. Meetings, appointments, the crisis of the moment. I hope you never get that phone call at work. That desperate plea from your child
to ‘come get me now’. The call where your heart drops into your stomach and you have no idea what you are walking in to. I would much rather be at my desk. Trust me. And, I need you to know that I don’t get extra free time off. I really hope you understand that.

In addition, I never ever want my personal life to make me seem incompetent. Ever. I work through lunch, take on special projects, work from home – do anything to prove my worth. That my family, my Autistic son with PTSD, anxiety and mood disorder does not define my capabilities as a professional. Or a mom. Or a person. I’m not trying to look better than you. I’m trying to make up for all that Autism has stolen from my life and career.

I don’t expect you to understand any of this. I’m not asking for privilege or special treatment. I’m asking for kindness. Basic human kindness from one person to another. And, maybe, a teeny bit of compassion.

If not for me – then hopefully for the next special needs mom.

With Love,

Every Special Needs Parent”

Courtesy Jacqueline Waxman

This story was submitted to Love What Matters by Jacqueline Waxman, 32, of New Jersey. Visit her Facebook page here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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