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For the Autism Mom Who Doesn't Feel as 'Patient' as Everyone Claims She Is

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author and her son in the woods hiking

When you decide to become an autism mommy blogger, you make a conscious decision to put yourself out there. I mean, really out there. For the supporters, the critics, the fans and the haters, you’ve supplied a platform to let you know precisely how they feel about you, your opinion and your words. I have to say, most people who take the time to leave a comment on my blog and my Facebook page are pretty kind. I occasionally get the, “You’re not autistic so why don’t you shut the f up!” or the “Stop whining, no one cares if your kid is autistic!” which makes me wonder why they bothered to read the post in the first place. For the most part though, my commenters are encouraging and kind — especially the fellow moms who “get it.” From them I get a lot of “Thank you for saying what I was afraid to” or “Thanks for putting my feelings into words,” which is the reason I started blogging in the first place.

Of all the comments I get — the good, the bad, the inspiring and the ouch I need a glass of wine to dull that kick in the face — the one that seeps deepest into my psyche is, “You’re so patient. Ryan is lucky to have you”. Um… yeah, sure I am and of course he is… most of the time. It’s so easy to believe I’m a patient, fabulous mother all of the time when what you see as you scroll down your Facebook newsfeed is the highlight reel, which, like most social media users out there, is what I post 99 percent of the time.

You know why? People want to feel good. They want to know their 2-year-old who was just diagnosed with autism five minutes ago is going to be just fine. They don’t want to know their kid may be wearing pull-ups until they’re 8 or that the change of seasonal clothing is like water boarding for your child or how you fell apart at the apple orchard over a stupid bee and threatened to Uber your kid a cab home.

However, when I started “The AWEnesty of Autism,” I promised to be just that: AWEnest. So, today, for all of you who believe I’m a patient, fabulous mom who belongs on a pedestal right next to Mother Teresa (OK, no one has ever even slightly suggested that), I want you to know I fall off that patient-mom pedestal with great regularity. And I fall hard.

Today, I will share the parts you don’t see on the Facebook highlight reel, the unused footage that winds up on the cutting room floor during editing. Moments I’m not proud of, but moments that make me real. I hope by splicing some of my initial cuts into today’s highlight reel you will see that what ends up on the cutting room floor has a place too and that just like me, you understand that being a patient, loving mother doesn’t mean you don’t go batsh** crazy every now and then.

So here you are: seven edits that didn’t make the evening Facebook highlights, but wound up as outtakes for you to see later. When you were ready. Outtakes that are as real and AWEnest as the highlights:

1. After returning home from a horrific morning at his brother’s soccer game, where all the other soccer players’ siblings were playing, running and having a blast while my sensory overloaded 3-year-old was trying to climb back into the womb to escape the whistle, the wind, the sun and the squeals, I looked at him fearing something was “wrong” and out of that fear I said, “Why can’t you be normal like the rest of those kids?” Yep, I said it. The N-word right to my 3-year-old’s face. A face that had not yet been diagnosed autistic, but that was different enough that it struck fear in my heart. I wound up in my bedroom sobbing for thinking it, for worrying about it and for saying it out loud while Ryan continued to line up his Thomas trains, scripting happily away. Yeah, that moment wound up on the cutting room floor, buried deep underneath a floor tile, hoping to never be unearthed again. But for you, I just unearthed it.

2. On the day Ryan turned 8, tired of having to scrape yet one more pair of poopy Buzz Lightyear underwear in the toilet, I looked my beautiful, sweet boy right in his gullible face and said, “It’s against the law to poop your pants after you turn 8.” Yeah, he never pooped on Buzz again, so my awful lie worked, but I may pay for that lie by spending purgatory next to a police officer wearing dirty Buzz Lightyear underwear. At the time, it seemed totally worth it. Place this in the “Unused Footage” pile. please.

3. While still hanging with my BFFs, Denial and Clueless, I wanted Ryan to follow his big brother’s footsteps (footsteps so different from his own), so, not only did I sign my sensory sensitive kid up for soccer, I had to practically sit on him while bribing him with any type of sugary treat you can imagine to put on those God awful clunky, plastic shinguards. Just so he would “fit in.” Guess how well a child with sensory processing struggles “fits in” on a windy, sunny, whistle-blowing soccer field? Ryan should have kicked a goal right at my head. Needless to say, sitting on a 5-year-old trying to make him be something or someone he is not while shoving a Tootsie Pop in his mouth not only is bad parenting, it is not something folks want to see while trolling on Facebook, so the shinguard moments did not make the highlight reel.

4. The innumerable, countless number of times I’ve lost my so called “patience” while doing homework with Ryan typically does not make the highlight reel. Just an aside, Homework, Hades and Hell all start with the letter H. That’s not a coincidence. There were times during homework where Ryan would get so stuck, so confused, so inflexible that his “brain felt like it was on fire.” I would try every trick up my sleeve to try and reach him, to try and help him, but because there was only so much I could take at times, rather than remaining calm and throwing some water on the fire, feeling so frustrated and helpless, I would fling open his bedroom door and run out allowing the air from the open doorway to feed the flames instead. No one wants to see the damage in the wake of disaster.

5. During a bout of the flu, I made the gigantic mistake of telling a bug-phobic kid that he needed to drink more fluids to flush out the virus and then explained that a virus was a teeny tiny bug making him sick. Yeah, I’m an idiot. It wasn’t until the next day that I realized how badly I screwed up once I discovered that a child could physically hold his pee for 36 hours. Yep, 36 hours for fear a bug would come flying out his, well, you know. This dilemma led to hysterical sobbing and tears which necessitated me putting him on the potty and tickling him while he screamed, “The bug is coming, the bug is coming” as the flood gates finally opened. You don’t see that kind of drama on the Kardashians, do you? How many Facebook likes do you think that moment would have received? Still waiting on that dislike button, Zuckerberg.

6. “Put your (insert a few of your favorite obscenities when losing your mind here) coat on right now !” Yeah, that happened. After I spent 20 minutes nicely asking, bribing and begging Ryan to switch from his fall fleece coat to his heavy winter coat. Seasonal clothing changes have never been easy. As I started to lose my patience, after asking no less than 20 times and knowing full well the bus driver was kindly waiting (as she so often did), my tone got deeper, louder and a little crabbier. So, when Ryan looked at me and said, “I won’t put it on until you ask me nicely,” well, that was about all the nice I had left. In the end, Ryan put his winter coat on while looking at me bewilderingly, wondering where his nice, patient mommy went. Then he climbed on the school bus and I went to the gym where I proceeded to sob for 15 minutes in the locker room. “Cut! Let’s shoot that scene again please.” Pretty please?

7. “I swear I am going to Uber you a cab!” Pause. Stares from strangers. “What does that even mean” This was a lovely exchange after an ugly day at the apple orchard. A day where Ryan was so mean, so hurtful to both his little sister Emma and me, that I wound up sobbing between the Jonathan and Golden Delicious apple rows. A day where a bee sent him into a swearing, freaking out meltdown that caused more than a few stares and comments. A day where I watched his sister’s face fall yet again at his hurtful words and the day I explained to him what “Uber a cab” means. In the end, we did not need Uber, but I needed a glass of wine… or two.

Moments that don’t make the highlight reel. Moments that, out of frustration, sadness, and anger often caused by my inability to reach my son, take a toll on even the most loving, patient mothers. Moments that leave a trail of guilt and tears. I get that guilt comes with the word “mom,” but somehow losing your patience when your child has a “different ability” just kind of makes the guilt feel even more soul-sucking.

We all have our not-so-proud mommy moments, regardless if our child has autism or not, because we are human. We are real. We screw up. So for all my supporters, who like and comment on my highlight reel, I’m grateful for your kind words about my mothering, but I want you to know that like most mothers, I lose it from time to time, and that doesn’t make us less. In fact, I think it makes us more. More real, more AWEnest, and in the end, even more patient. We learn from these moments. That doesn’t mean we won’t lose it the next week or even the next day, but we learn that even in our worst moments, we’re trying to do our best.

It’s taken me awhile, but I now realize that no matter how many edits from the moment wind up on the cutting room floor, the end should always make the highlight reel. Because our ending always finishes with love, snuggles and a gentle reminder that Mommy’s frustration always fades away, but my love for him never, ever will.

That’s a highlight worth playing over and over again.

author kissing son on the forehead in a park

Follow this journey on The Awenesty of Autism.

Originally published: October 26, 2015
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