Parenting Special Needs

What’s Not on the Highlight Reel: True Confessions about Raising a Child with Autism

Like other moms, moms with children who have autism often only share the good stories on social media. Often the bad days are edited out of the highlight reel.

By Kathy Hooven of The AWEnesty of Autism

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 have given them a platform to let you know precisely how they feel about you, your opinion and your words.

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 are so patient. Your son Ryan is lucky to have you.” Ummm…yeah, sure I am, and of course he is…most of the time.

It’s so easy to believe that I am 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% of the time. You know why? People want to feel good. They want to know that their two-year-old who was just diagnosed with autism five minutes ago is going to be just fine. They don’t want to know that their kid may be wearing pull ups until he is eight, 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.

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, moments that I went batsh** crazy, but moments that make me real.

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 are 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 three 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 three-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 my child 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 eight, tired of having to scrape yet one more pair of poopy Buzz Lightear underwear in the toilet, I looked my beautiful, sweet boy right in his gullible face and said, “It is against the law to poop your pants after you turn eight.”

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 in his big brother’s footsteps (footsteps that were so different from his own), so, not only did I sign my sensory sensitive kid up for soccer, but I also 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 shin guards. 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, but it also is NOT something that folks want to see while trolling on Facebook, so the shin guard moments did not make the highlight reel.

4. The innumerable, countless number of times I have lost my so-called “patience” while doing homework with Ryan typically does not make the highlight reel.

Just as an aside, Homework, Hades and Hell all start with the letter H. That is 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 that 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 in order to flush out the virus and then explained that a virus was a teeny tiny BUG that was 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 he held his pee for fear a bug would come flying out his, well, you know. This dilemma lead 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…everywhere. 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, and 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 of whether our child has autism or not, because we are human. We are real. We screw up. 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 are trying to do our best.

It has taken me awhile, but I now realize that no matter how many edits 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 and that my love for him never, ever will.

Now, that is a highlight worth playing over and over again.

This post was originally published on The AWEnesty of Autism.


About Kathy Hooven

Kathy is the mother of three amazing kids, and one of those kids just happens to have autism. She has been blogging at The AWEnesty of Autism for 2.5 years, sharing her family’s journey as they ride the waves of autism without drowning. Her blog is real, raw, funny and AWEnest. Several of her posts have been shared on The Mighty,, Autism Speaks, and Yahoo Parenting. You can also find her on Facebook.