The Hidden Life We Live

Parenting Autism is hard.  

Parenting Autism during a world wide pandemic and quarantine is nearly impossible.  

But, first, I need to start with this. For all of my well meaning friends and family who will comment something along the lines of: 

“You’re amazing and so strong. I don’t know how you do it.”

Please. Don’t. 

I appreciate it – more than you will ever know. 

But first, I’m far from amazing. Second, I didn’t pick this life. It was assigned to me by some universal random number life generator (that or I lost a high stake coin toss).  I’m not strong – I don’t have any other choice. I’m simply a mom grasping at straws trying to combine life experience with education to (hopefully) help my child have a productive and happy life. 

Now that is out of the way. 

Change. Change is hard. Comprehending the world is shut down is that much more hard. Even for neurotypical people. It’s really hard. Having a brain on overdrive that does not understand social cues or norms and trying to comprehend quarantine and such a long period of change – I can’t imagine.

I truly feel for my child. I do. To my core. I wish I could change everything about the world right now. 

Life is about change. The only constant in life is change itself. But, the one thing that doesn’t seem to change is just how hard parenting Autism can be.

Yes, my child is amazing. I will tell anyone who will listen.  But, I need to keep it real. That’s the whole reason I do this writing thing. To. Keep. It.  Real. 

In many ways Autism is the modern day Scarlett letter A. 

Autism ruins relationships. Not just marriages. But, all sorts of relationships. Relationships between grandparents and siblings and friends.

Autism, High Functioning Autism in particular, is really freaking hard to understand. Yes, my child is brilliant and can tell you about things you never knew with crazy accuracy. But, that same child will have a melt down because his 2-year old sister hit him. That same child cannot express emotions or feelings until the point where they build up and EXPLODE. Or, something as simple as the “wrong” restaurant for dinner causing a major catastrophic blow up.

This is real life. This is a hidden life so so so many people live. 

Yes, Autism is amazing.  And brilliant. And breathtaking. 

But, at the same time Autism will destroy a living room in seconds. 

Autism will destroy your hopes and plans for the present and future. 

Autism will punch holes in walls. 

More importantly, Autism will punch holes in souls. 

Parenting Autism will cause you to question every move you make. Every decision. At what point during the journey of trying to guide and help one child are you doing a disservice to your other children.

If it was a husband or boyfriend doing the things my son does – I would be told to pack my little children up in the middle of the night and leave the abusive relationship. But, because it’s a child as the “perpetrator”- the world and all advice goes silent.  

There is little to no data of what happens to the siblings. The siblings that watch every high and low of living with Autism. 

Quarantine is hard. I have done everything I can to make it “bearable”. Autism in quarantine is nearly soul crushing – for child and parent, alike. 

Mental health is talked about a lot right now. Mental health in general is being questioned in a quarantine state.

For us all PLEASE let’s stop hiding because Autism most days is hard. Not just quarantine days.

It is not until we remove our veils of silence and collectively come together that maybe, just maybe, our burden will lessen. 

Written by, Jacqueline Waxman

Jacqueline Waxman, M.Ed is a blogger-in-training living in New Jersey with her kids. I’m a social worker by profession and special needs Mom. I chauffeur children to their preferred destinations, feed-bathe-and-clothe my little people when we are not playing outside. Passions include writing, photography and advocacy. You can follow my page at Walking a THIN Gray Line.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.