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

67
67
0

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.

67
67
0

RELATED VIDEOS

JOIN THE CONVERSATION

When Your Child's Meltdown Is Over, but You're Still Affected

6k
6k
10

Ninety-nine percent of the time, I’m firmly in the “autism is beautiful, never easy, but beautiful” camp. I never presume to tell you how the autism in your house should make you feel. Ever. That’s not my job. I know my son Big’s autism isn’t about me, but it kind of is. I’m his mama. He walks around every day with a large piece of my heart. So, when his heart breaks, mine rips open. Today I feel like autism is “brutiful,” to steal a phrase from Glennon Doyle Melton of Momastery.

Yesterday Big had a meltdown, and it was a doozy. (You can read more about it on our Facebook page.) The important thing on his end is that he made it, he moved on. He ended his day and night on a positive, joyful even, note. He woke this morning bright-eyed and bushy-tailed, ready to take on the day.

Here’s the part where it’s about me. I have a meltdown hangover. My head and stomach hurt. I’m tired and feel like one of those nights from long ago when I took tequila shots. My chest has a tightness and anytime my phone buzzes, I panic just a little. I start looking toward the distant future and the one creeping up at a pace I can’t stand. I’m scared of puberty and what it will bring for my kind and gentle boy. Teenagers aren’t exactly known for taking care of the ones with fragile hearts and spirits. I’m scared of impulsivity and boys, and adding autism to the mix of an already combustible cocktail? I don’t know if I’ve got it in me.

Yesterday Big said, “It is all too much, Mama. I can’t do this anymore.” At that moment, my heart shattered into a million tiny pieces. Fighting through tears on the phone, I said, “Yes, baby. Yes you can. You can always do this.” His little voice over the phone was so unsure. So scared and tired. I did the best acting of my life in that moment, not sobbing. Sounding upbeat.

Today, I can’t shake it. I can’t have some hair of the dog and Tex-Mex for this hangover. Time. I just need a little time. This weekend we are due for heavy rains and flooding, which means couch time and seeing my boy be himself — naturally happy and silly and getting on my last nerve. Maybe by Sunday. Sunday morning over cinnamon rolls and coffee, I’ll bet my hangover leaves.

I made this photo today saying Big might very well be the picture of resilience. Maybe that’s the beauty of his autism today. No matter the challenge, he comes back. I should learn from him. 

Follow this journey on Autism In Our House.

6k
6k
10

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

He's Not Naughty, He Has Autism

5k
5k
0

Author's son sliding down slide The gorgeous SoCal sun shone its bright face on the day, so my husband and the two older boys drive to the local lagoon for some water sports with friends. Charlie’s therapy schedule today won’t allow me to join, so it’s just me and the two little guys.

We continue on our usual Sunday morning routine: church then playing at home. Charlie’s therapist shows up surprisingly on time, so we head off to church.

About 15 minutes into service, I receive a text from the nursery: “Come get Michael.” He doesn’t tolerate the nursery well, so this is expected. Not a big deal. I’m determined to have a great day.

After we arrive home, Charlie plays outside for a bit. He’s learning to play in our yard. Usually, he wanders about, never actually playing with anything, so the therapist and I coerce him into sliding down the slide and swinging for a whopping minute. This sounds ridiculous, but we worked hard to get here.

It’s a fabulous morning despite the minor church setback. I know the afternoon is going to bring great things. Charlie has a two-hour break before his next therapy session. We reserve the next session for eating out with the family, usually at a fast food place during off hours, to avoid stares of curious onlookers if he has a meltdown.

His therapist arrives in her brightly colored, bold patterned pants. She’s as eager as I am to get going. We decide to try a new store. This is a challenging feat for Charlie — exploring the unknown. Sensing my hesitation, the therapist assures me it will work out.

It begins so wonderfully. I actually feel a sense of relief. I’m out shopping at a new store with my son, and he’s functioning just fine. Usually, I’d be anxiously waiting for the ball to drop, but not today. Then it happens without warning.

I don’t know if it’s the skewed lighting, the plethora of colorful items, a smell that invades his nose, a stranger peering into his space, but this meltdown is of epic proportions. I still cry thinking about it.

My sweet baby boy is on the ground, out of control, screaming and banging his head on the cold, hard tile. The therapist pushes me aside and tells me to move out of the way. My heart jumps in my throat. No. I can’t leave him. He needs me, but I know he doesn’t really want or need me in that moment.

This realization sinks deep, piercing my anxious soul. There’s absolutely nothing I can do when this happens. It’s always a waiting game. I stand back and watch his therapist protect his head from crashing on the ground as tears well up inside.

Customers gasp as they walk by, looking at me, diminishing every good mothering deed I’ve ever accomplished. Snickering rings in my ears. The beats of my heart grow louder and louder. I want to pick up my baby and rescue him from this scary place he’s in, but it doesn’t work that way. He doesn’t work that way.

author's son crying, covering ears

Touching him or moving him only makes things worse. It feels like an eternity; the seconds tick into minutes. Once he regains his composure, I’m worn thin and exhausted. Escape feels like my only option, but his therapist insists we check out and continue.

My eyes grow large as she explains the clinical reasoning behind us staying. Her words fade into oblivion. I quickly, painfully unload my few items onto the conveyor belt. Charlie sits as calmly as he can, acting as if nothing ever happened. I, on the other hand, feel ragged and insecure. Why did I go alone? I want my husband. He’s always so calm.

We pay without incident, just a few normal toddler protests, nothing unusual, until we pass the front. Again, I have no idea what sets him off, but Charlie returns to meltdown mode. This time we’re almost in a safe, clear space where I can cry and pretend I know how to comfort him. Then it hits me like a punch to the gut.

“Take him home already!” a crass, older woman yells directly at me. I can’t do this! Frozen and breathless, I dream of melting all over the floor in a heap of my own tears. I want to explain to her all about him, how we’re working on getting him to tolerate outings. I can’t though. I continue to the car and move on.

When we’re out in public, it looks like my son is a naughty child. He flails in the shopping cart, kicks, hits and head-butts. If strangers get too close to him, he tries to slap them in the face. This may sound like a joke, but it’s our reality. I’m always on guard for adoring strangers. If a new person says hi, he screams at them. He’s not a bad kid; he has autism, which makes living in this overwhelming world a challenge that we’re conquering together.

When we first started ABA therapy, he wouldn’t sit in the grocery cart for longer than a few minutes. Sometimes we couldn’t even make it into the store. I was limited to shopping only at Target and only if I walked the same route every time, never changing the routine, always buying popcorn first.

author's son in target eating popcorn in the shopping cart

You wouldn’t believe the comments, looks and remarks I’ve battled. I’ve even had people laugh at his antics. I do my best to keep my head up and focus only on my kids, ignoring the daggers of others.

What they don’t know is that Charlie’s mind is different than yours and mine. He sees the world differently and processes everything in a different way. He can’t communicate these needs and feelings; his language is limited, so it’s all foreign to me. I do my best to anticipate his needs, always actively avoiding a meltdown.

He loves order, routine and rigidity. New places and new people overwhelm him. Often times, he lays on the ground silently, absorbing his strange new surroundings. He’s a sensory seeker, so he needs to move to feel his own body. I’ve heard it explained that his brain can’t feel his body, so he needs to move his limbs to know they exist. It all sounds so bizarre, but this is the new realm we reside in.

My sweet boy is not naughty; he’s struggling to find balance in this unpredictable world. Please don’t judge; move on about your day. We don’t need your detrimental input. We’re doing the best we know how.

Follow this journey on Crazy With a Side of Autism.

5k
5k
0
TOPICS
JOIN THE CONVERSATION

My Daughter Has Autism, My Son Doesn't. Both Are Good News for My Family.

66
66
0

I spent over a year fighting the voices in my head that told me my daughter, Julianna, had autism. I was okay with other diagnoses, like developmental delays, speech delays, even sensory processing disorder. The school district, who had been doing the bulk of the evaluations, went along with me, because I think they sensed my trepidation concerning the word autism. Back then, it felt so final, so limiting. So I felt better believing that she could have other things, but not autism.

W-62

When she approached her 5th birthday, I became concerned. Her behaviors were getting out of control. I was losing my ability to care for her properly. Our family seemed like it was hanging by a thread. And the local regional center denied services because she didn’t have an official diagnosis of autism on her records, only “autistic tendencies.” So when she started her second year of preschool, I told the psychologist to give it to me straight. If he thought she had autism, I was ready to hear it. And more than that, I desperately needed more help for her.

I remember sitting at the table in the conference room of the preschool, surrounded by her wonderful teachers, the school director, the therapists and the psychologist. I already knew why we were meeting: We were finally going to put that word “autism” on her IEP, on her official reports. It would be her primary diagnosis. But I didn’t realize how much it would hurt me, even being ready for it. The psychologist began reading his report, and when he mentioned autism as her new diagnosis, it stung me. It felt like I had just been pushed hard, in the chest, like the breath had been knocked out of me. I fought to hold back the tears, but it was pointless. I sat there, the parent, the representative of Julianna at this meeting, and just cried.

I’ve cried at so many IEP meetings, and I’ve always wondered how it makes the others at the table feel. Are they uncomfortable? Is it awkward? Do they really understand why this is so hard to hear? To sit around a table and hear all these things said about your child — global delays, first percentile, mild mental retardation, gross motor delay, fine motor delay, speech delay, the list goes on. And now autism. But that word was key to getting her the help she needed and the peace our family was seeking.

W-72

I’ve come a long way since then. That was seven years ago, and just this week, I began the same process with my youngest child, Nathan, who is almost 3. He was born with a cleft palate and a duplication of chromosome 22, which puts him at risk for all kinds of delays and disorders. He’s been watched closely by a team of specialists since his birth. He’s had the surgery to repair the palate. He’s doing speech therapy and progressing well. But because of our family history, I had to know — was autism going to be added to his list?

He was evaluated by our regional center, the same one that denied services for Julianna year after year. I sat in the waiting room with other parents seeking answers while Nathan played with the Tonka trucks. A nice woman called his name from the doorway, and we walked back to her office. After a series of questions and tests, she said he did not have autism. I was expecting this and didn’t feel relieved. All I could think about was my daughter.

When I got home, I posted the news about Nathan on my Facebook page, and many people liked the post and commented things like, “What good news!” And they’re right, it is good news. Good news for Nathan. Good news for our family.

But I couldn’t stop thinking about Julianna. She has autism. She’s still dealing with anxiety, motor and vocal tics that she can’t control, sensory issues related to food and clothing and smells and sounds, problems communicating and making eye contact, a strict schedule of therapy, a fear of swimming and water. And that’s OK. She’s also good news to our family. And if you asked her, she’d say there was nothing wrong with her. Sometimes I ask her, “Do you like being Julianna?” She always answers with a little laugh, “Yes, I like being Julianna.”

Yes, I am happy Nathan doesn’t have autism. But even if he had been given the diagnosis, I would have felt the sting, the loss of breath, just like I did seven years ago. Hearing the word is hard — but the healing does come, slowly. I still ache for Julianna and her challenges, but she is also good news in our family. She is teaching us, and others all around her, about kindness, tolerance, acceptance and love. And we are blessed. I don’t fear autism anymore. I am embracing it. It’s not final or limiting to me anymore.

It makes her who she is, and our family is better because of it.

Follow this journey on The Special Reds.

66
66
0
TOPICS
JOIN THE CONVERSATION

Sesame Street Creates Online Videos and New Character With Autism

5k
5k
0

“Sesame Street” and autism awareness is a perfect combination.

This week the celebrated children’s show introduced the world to Julia, a character with autism. Julia is part of an initiative called “Sesame Street and Autism: See Amazing in All Children.” The online program will provide resources for viewers on the spectrum, as well as educate the general public about autism.

Also available on the Sesame Street and Autism website are some fantastic videos telling the stories of people with autism. In them, the “Sesame Street” character Abby spends some time getting to know parents, siblings, friends, teachers and kids affected by autism.

We’ve compiled some of our favorites of these videos below for your viewing pleasure. Enjoy!

Thomas’s Story: 

A Sibling Story: 

Nasaiah’s Day: 

 Family Friends: 

Which stories are your favorite? Let us know in the comments below!

5k
5k
0
TOPICS
, , Video,
JOIN THE CONVERSATION

10 Things You Can’t See in This Picture of My Son With Autism

270
270
2

We have all heard it said that pictures can be deceiving. I’ve thought a lot about this lately. We aimlessly browse through our Facebook newsfeed and see picture after picture of happy moments. I think it would be interesting to see the real picture. Perhaps we would all like each other a little more if we didn’t have the facade of permanent happiness on social media. 

Occasionally, I see a picture of a non-typical family. Their faces are full of smiles, except for the unruly toddler who appears to be possessed by demons. These pictures always make me chuckle. I like the realness of it.

As a parent, I find it quite difficult to capture pictures of my son, Drake, period. My child doesn’t love the camera. Add autism into the mix, and I feel like I need a fancy DSLR camera that takes action pictures.

Some of the greatest pictures I have of Drake were taken by his therapists. However, as stated previously, pictures can be deceiving. I will never post a picture of Drake that would embarrass him one day, but I think there are times others need to know the story behind the picture. In order to educate others and spread awareness, it’s imperative all aspects of autism be explained.

jill.2-001

The picture on the right shows what appears to be a happy little guy holding his “First Day of Preschool” sign. But here are 10 things you can’t see.

1. You can’t see his amazing ABA therapist, Lindsay, working hard to get this picture for me. You see, as an autism parent, I don’t have the luxury of just snapping a picture of Drake looking cute in front of the school building with a huge grin on his face. I had to ask Drake’s therapists to get a picture for me.

2. What you don’t see is the major meltdown that occurred when Drake was asked to hold the sign. You don’t see his therapists trying with all their might to make this kid smile.

3. You don’t see the iPad they eventually had to use (playing the “Kung Fu Panda” trailer) in order to get one brief smile.

4. There is no way for you to see the picture schedule being shown to Drake to prepare him for his big day.

5. You can’t see how anxious I am about this new school year. Just one year ago, I withdrew Drake from a different preschool because he would throw up when we pulled in the parking lot from sheer anxiety.

6. You can’t see how much progress he has made in ABA therapy. It may not work for every child, but it works for mine. He is happy. He loves his therapists, and they love him.

7. In this picture, you can’t see how thankful I am for his therapists. I have no idea where my little guy (or myself) would be without these amazing and selfless individuals.

8. You have no way of knowing he only attended preschool for 30 minutes the first few days to make sure it was a positive experience.

9. You don’t know about the meeting I had with his therapy team about preschool, or that I almost backed out.

10. Nothing about this picture tells you how proud I am that he rocked his first day and every day since then.

You see, pictures are only that — pictures. There is always a story behind them. Our story can be complicated, worrisome and tiring, but it’s ours. Despite all of the challenging stuff that can’t be seen in a picture, I am thankful.

Follow this journey on Walking With Drake.

270
270
2
TOPICS
, Contributor list
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.