A Moment of Reflection On Parenting and Autism

A few weeks ago Isaac and I went to San Diego for a quick weekend trip. We’ve had nights away here and there but had not been on a trip alone since having kids. As a parent it’s hard leaving your kids but it’s always nice to take a breath of air.  Even better to do it with your best friend. 

As he and I walked, bag, stroller and child free through Balboa park we came across The Museum of Us. Drawn in by the building’s beautiful architecture, we peeked inside to see a stunning display of totem poles. Having the jarring freedom to do whatever we wanted, without the fear of it being too loud, or us being too loud, or meltdowns, or lack of food options, we went inside and just bought tickets (I know that sounds pretty normal, but quite the treat for us).

Museum of Us San Diego, CA

If you haven’t been there, I highly recommend it. I’m a museum lover and this one hit the spot.  I loved walking the halls reading all the aimless information I could take in. I feel like I never have time to learn anymore unless it is directly related to parenting, autism, or a hobby I specifically seek out and carve out  the time for. It was nice to just be, and to explore.

Then I came across the PostSecret exhibit. It was created by a man name Frank Warren who, after working suicide hotlines and hearing strangers’ deepest secrets, began a project where he invited people to send him their secrets on homemade post cards. 

I had seen the book years ago and was instantly intrigued again. Who doesn’t want to read other people’s secrets?

As I roamed the exhibit, I read the postcards all displayed in different ways; on clipboards,  framed, pinned, shielded in clear plastics, stacked like records, etc. I had a range of emotions. Some were incredibly simple, “I wish it was my birthday all year” . A lot were funny and sweet; “I throw pennies at cars that don’t use their blinker”. Many were sad; deep confessions of things people could never speak out loud, “I write suicide notes to convince myself to keeping living.” They all pierced my heart. They all felt sacred. 

One of the walls of the exhibit had painted wooden boxes with doors. Each door had its own secret. As I worked my way down I opened one and immediately caught a glimpse of the all too familiar puzzle pieces. You know the colorful connected shapes that scream autism. I knew I would feel this one.

The card read “I’m dedicating my life to Autism Research, but I know I’ll never be able to cure my brother.” I froze. I felt my mind zoom back into my real life. Where I am a mom to an autistic child. To where I worry and overthink. My moment of escape, gone.

Museum of Us, PostSecret Exhibit Frank Warren Artist, Unknown.

We don’t speak of a cure anymore. Really right around the time autism entered my life organizations like Autism and TACA were dropping the word “cure” from their names, the advocacy generally moving toward awareness and acceptance. I have watched parents lose themselves chasing that cure. I’m so grateful we never went down that path. 

I did not judge though. This was likely older and I get it. You want to help someone you love and a cure sounds like an attainable solution. The reality is a cure isn’t needed nor can one exist.

As I stared at those words, I wondered about this person. I wondered where they were and if they’ve changed. I thought about their brother. Could he speak? Does he hurt himself? Did the world crush him? I thought of all the reasons this sibling wanted to help him. 

And went as far as to dedicate their life to curing him.

It made me reflect on my own journey. How when my son was diagnosed, we were told the actions to immediately take to help him, to possibly fix him. How in the beginning my heart was broken, my fears were fulfilled and I felt like I could never measure up to be his mom. How I too had to dedicate my life to some yet unknown solution.

In the end, that solution had nothing to do with him. There is no fixing my beautiful boy. It was me who needed to change. To accept. 

I hoped the person who wrote that card found that out also. That they weren’t chasing a cure anymore. That their goal became fixing the world to love their brother instead of fixing him to fit into it. 

As I walked the rest of the museum my mind remained there, standing in front of that postcard, reflecting on where I was on this journey.  Autism isn’t easy. Life will never be easy for my son, but as a mother I want it to be easy in the most simple ways. I wish he did not have to fear the world; I want him to be able to relax and enjoy it without having to worry about it being too loud or bright. I do not want people to take advantage of him or be mean to him. That’s just me being a mom, but my son is who he is.

Instead of searching for a nonexistent cure, I write and talk about who he is, to spread awareness that hopefully begets acceptance for him and others like him. I help my son manage his emotions and figure out how to self regulate, whether or not that looks strange to others. The best thing I did was to join my son’s magnificent world. I have learned, and continue to learn, so much there.

I’m grateful we had that trip and I had that moment in front of that postcard. As I took that time to swim to the top of the parenting pool and take a breath of fresh air, I was able to see the progress; to see how far I had personally come as a mom to an autistic child and as a human in general. 

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