Friday, August 23, 2019

"ASD MOM" and Me

As I was leaving the library the other day, I noticed that a maroon van had parked in the space next to mine. The first thing that caught my eye was the large yellow sticker on the side of it indicating that the van may contain passengers with autism that might be unresponsive to verbal requests/commands.

"Well, that's kind of awesome," I thought to myself.  "What a smart way to keep your children safer."

Then as I walked past the van to get to my own vehicle, I noticed that the license plate said "ASD MOM."  All of a sudden, my stomach started to hurt.

Is that mom completely defined by her child(ren)'s diagnosis?  As a parent of a young child with his own disorder... I really hope not.  And does she have other children?  Is ASD MOM able to take off that "hat" if she needs to and just be there for her other kids?  How do they feel about that license plate?

Or has the diagnosis permeated their lives so much that there isn't even a hat to remove anymore?

My daughter started school today, which means that yesterday was the last day of her summer vacation.  I'd like to say that we spent the day doing fun stuff together, but we didn't.  I spent yesterday being "her brother's mom."

Did she and I get to spend the afternoon at the pool soaking up the last bits of summer?  Nope.  I spent the afternoon in a therapy waiting room listening to her brother scream at his Speech Pathologist through the closed door.

After therapy, did I get to take my daughter out to enjoy her favorite dinner? Did we talk about what she was excited about in the upcoming school year?  Another no.  I spent our normal dinner time at a meeting with my son's new teachers for the preschool program he'll be starting next month.

Yesterday felt like a day I should have spent soaking up my daughter, but I didn't. Was I being a good mom?  Yes.  Absolutely.  I just wasn't being HER mom.

Did I know that having a second child meant that my attention was going to be divided?  Of course I did.  When I began to realize that my second child wasn't developing on a typical path, I knew almost immediately that my attention was never going to be divided EVENLY.  What I didn't realize was how often I felt like I was going to be removing my preferred "mom hat" to put on a different one.

Does the fact that I don't want to wear the "IEP hat" all the time make me a shitty parent?  Does the idea that I wanted to spend yesterday with my daughter (instead of doing tasks directly related to my other child's delays) make me a monster? I don't know.

I'm not native to the "loss of self" that comes with motherhood.  I'm aware that my identity has been completely, irrevocably changed.  And even 20 years from now, when (fingers crossed) neither of my kids are living at home... I know I won't be the same person I was before I had children.

Maybe ASD MOM is just proud of her child and wanted a public way to express it. Maybe ASD MOM has gotten to a place on her journey where she waves the diagnosis in her life around like a badge of honor. Maybe I'll get there someday.

But maybe it's also acceptable to know that I will never put my child's diagnosis on my license plate.

Sunday, August 18, 2019

End of Summer Stomachache

My daughter goes back to school in a few days, and my stomach hurts.

About this time every year, I start to have this sinking feeling that we didn't do enough "fun stuff" during her summer break.  It feels like the time is slipping through my fingers, and we just blew it.

In an attempt to combat these feelings this year, I started writing down fun things that my daughter did (or that we did as a family) these last couple of months. Theatre Camp, Rainforest Camp, swimming and splash pads, visiting friends out of town, trips to visit both sets of grandparents... nope.  Didn't help.  I'm still feeling pukey.

If you asked my daughter, I think she'd tell you that she got to do everything she wanted this summer minus one big thing with her aunt that we just couldn't work out logistically.

So why am *I* having such a hard time?

Probably because this isn't really about the end of summer.  You guys, I blinked... and my oldest child is almost eight.  And in 10 years, she'll be almost 18.

And then we'll *really* know if I "blew it" or not.

Am I doing stuff now to build those skills she's going to need in 10 years?  Can she entertain herself alone and play well with others?  Yes.  Can she feed herself?  Umm... does opening a can of Pringles count?

Does she understand that actions have consequences? Does she pick up after herself? Does she tell the truth?  Most of the time.

What it really boils down to is this: In 10 years, will I have done all the things I needed to do to create a human who is ready to leave me?  Or maybe even more significant, a human who CHOOSES to leave... but still finds enough comfort in the feeling of "home" we created to desire to come back occasionally?

Sandwiched between the games of Battleship and the afternoons of too much screen-time, am I teaching the lessons that need to be taught?  Are we balancing the chats about "which super power you'd like to have" with enough *big* conversations?  Am I saying the right things?  Am I imparting enough wisdom?

My God... is there any way of knowing?  Probably not.

Maybe one of the secrets of parenthood is to get comfortable with the perpetual aches. The ache of constant worry, the ache that occurs after you lose your cool with the little people you love the most, and the ache of realizing that no matter what you do... you have no idea how these kids of yours are going to turn out or what they'll remember about their childhoods.

What is it people say about using your mind to reduce your pain? Breathe through the ache.

School stars in a few days, and all I can do is keep breathing.

Monday, August 5, 2019


The other day, my daughter watched a video of someone doing origami on YouTube and decided to attempt it herself. After getting stuck and frustrated, she asked me for help.  I didn't have the heart to tell her that precise folding and creating sharp lines has never been my strong suit, so I attempted to finish her project.  It was a big fat fail.  In fact, she had moved on to something else before I even accomplished all the steps in the video.

Even though I doubt my daughter will be make the effort to create another crane or lily anytime soon, I find myself thinking about origami a lot lately.

The question that keeps popping up in my mind is:  Do you think a person starts out as a flat piece of paper?  Or do you think that we each start out as a fancy folded piece of art... and growing up is what unfurls us back into a simpler/truer form?  When I think about my life, I guess I'm not really sure if I'm being "folded" or "unfolded."

Maybe both.

I can remember making these definitive black and white statements about myself /my beliefs back in high school.  (You know, with the unwavering assurance that you *completely* understand the world that could only belong to a 16-year-old.)  Things I said I'd do, or things I was positive that I would never do.  Lines that I drew around myself in the sand that were going to be these hard and fast rules for my life.  Maybe those were my first "hard folds."

If so, quite a few of those have already come undone.

And maybe I had to be "unfolded" to make sure there was enough paper for the new folds.  The complicated shapes that I never planned to attempt.  The sculpted corners of my life that only happened because I was nudged in that direction by my own misguided life choices... or by the people that love me the most.

And, my God... some of this folding hurts.

Sometimes I want to push back against the bending paper of life with all my weight and force it to stay where it always was.  Sometimes it feels like bending that corner into it's new location is going to crush me.  And even when I know in my heart the paper HAS to be creased, sometimes it feels like the entire thing might rip in half in the process. 

I don't know if the end goal is a life that resembles a beautifully folded sculpture, or the peace that must come with being a flat sheet of paper that's finally smooth and free of all of life's creases. 

What is am sure of is that I should probably get comfortable with being "unfolded" and "refolded" for the rest of my life.

Thursday, August 1, 2019

Getting High on Good Deeds

Scrolling through social media a few weeks ago, I stumbled onto a post about a 6-year-old boy named Bentlee who loves trucks.  Bentlee has special needs, and the poor little dude recently broke his femur and had to have rods put into his leg.  But his mother wasn't creating a "Go Fund Me," she wasn't organizing a "meal train" to give her more time to take care of her other three children... she was asking for photos of trucks.

Apparently Bentlee LOVES semis (he calls him "beep beeps") and his mom thought that getting photos of trucks in the mail (and then hanging them up on the wall) would lift his spirits.  

I'll admit, lots of times I scroll on by stories like this one ... but this time I wanted to do something.

My daughter and I spent an evening putting together a package for Bentlee.  She got out her markers and created a super-colorful semi picture for him.  I printed a photo of my husband's truck, and a photo of a truck belonging to a friend of ours.  My daughter carefully selected about 15 of her "Super Truck Collector Cards" that she thought Bentlee might like.  We each wrote him a letter, and then we mailed it off.  

And I felt great.

This kid lives about 170 miles south of my family, and I will never meet him. I don't expect that he is going to send us a letter back, or that I'll even hear if he liked our package of stuff. But it doesn't matter.  That feeling of doing something nice for someone else was exhilarating.  And this isn't the first time I've felt it.

About a year ago, I convinced my "pack-rat" daughter that the play kitchen set in her room was just taking up space.  After unsuccessfully attempting to give it to a couple of different people I know in real life, I decided to just give it away for free on Facebook.  The set wasn't in bad shape, but my daughter had covered it in stickers that I couldn't peel off.

The woman who replied to my post saying she wanted it told me that her husband could meet me that same afternoon in a public parking lot across town.  SOLD.  I decided at the last minute to throw in a basket of fake food and play dishes/tea set stuff.  When the man arrived, he couldn't stop smiling.

"Oh my gosh!  This is awesome!  And it's bigger than I thought.  And all this food! Are you sure you don't want any money for this?!?!"

I laughed and said no.  We squeezed everything into the back of his car as he told me how much his daughter was going to love it.  Then he thanked me one final time and drove away.

Then I was the one who couldn't stop smiling.

Sometimes life feels really hard.  But somedays are all about trucks or kitchen sets and getting high on doing good deeds.  You know, as weird as it sounds... I think I'll try to give things to strangers more often.