An Easter Mishap Helped Me Embrace My Daughter With Autism for Who She Is

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piper playing with an easter egg Yesterday was Easter morning. Excitement was in the air as the children woke up to find the Easter Bunny had stopped by while they slept. True to tradition, empty baskets were set outside of each child’s bedroom door. Next to each was a single, candy-filled egg, strategically placed to let them know an egg-hunt awaited them downstairs.

I awakened to choruses of “The bunny came!” and “Look! We got baskets and eggs!” from my older two. Piper, however, was less than thrilled. She sat at the top of the stairs and cried. “No! No! I want my purple basket!” The bunny had slipped up and left a pink one in its place. 

My drowsiness lifted, and I immediately shifted into crisis-aversion mode. How could I have forgotten that last year she held onto a purple, plastic bucket as she collected Easter eggs? My husband and I led them downstairs, and though I swiftly replaced her pink basket with the purple bucket, the damage was already done. She threw the bucket and sat on the floor with all the makings of an impending meltdown.

There we were in the kitchen, eggs everywhere, just waiting to be scooped up. But I could feel the fun-filled event I had pictured in my head the night before quickly turning into tension for everyone.

“Why do your always have to make so many rules because of her?” one of my older two protested because I asked them to wait until she calmed down.

At that moment, my gaze met my husband Dave’s, and we turned them loose to hunt their eggs. With no words necessary, we had both realized that collectively standing there waiting for her, bracing ourselves for the meltdown was not going to accomplish anything.

The funny thing is, once we stopped bracing ourselves for the “inevitable” and relinquished control of the situation as a whole, Piper stood up and walked over to some eggs that had been left in her Minnie Mouse slippers. The meltdown never happened. Sure, she became preoccupied with those two eggs and stopped “hunting,” but she was happy. All of the kids were happy. It might not have played out exactly how I imagined it would, but it was good enough and we embraced it.

Though that experience was but a drop in the bucket of parenting a small child with autism, a valuable lesson was hidden in those few moments. I learned that finding our way through each day is a lot more positive when we stop bracing ourselves for the fallout and start embracing Piper for who she is and how she views the world and on a smaller scale, each experience.

Hyperfocus is often a point of frustration in parenting a child with autism, because a child becomes so involved in an activity may find it extremely difficult to transition to another activity. Yesterday, instead of seeing that trait as a negative, I embraced the heck out of it. Given three crayons and a $1 coloring book, Piper was the quietest, most well-behaved child in church.

I know everyone in the family was holding their breath when Piper followed her sister to the front of the church for the Children’s Moment. She’d never done that before. No one knew if she’d wander or get overwhelmed. But she sat there with her sister, in front of the entire congregation, and when it was done, returned to her seat just like everyone else. Embracing her progress and growth enabled us to witness her shine in a totally unfamiliar social situation. To everyone watching, she was just like all of the other kids. To me, that was the most amazing thing I felt all day.

Embracing her happy nature and love of music allowed us to enjoy her dancing innocently in the aisle as we slowly filed out of the service.

Embracing her patience allowed us to enjoy brunch at a fancy restaurant. Even though the service was slow, at best, not once did she leave her seat.

The routine that is so necessary to maintain also paid off big-time, as she went down for a nap shortly after 2 p.m., because that’s what she does every single day in Pre-K. It afforded me an uninterrupted hour of play time with Cam, a connection which he needed from Mommy.

There are so many moments in our journey when I get frustrated and lament, “This is not how it’s supposed to be.” Reflecting on yesterday has opened my eyes, literally, as Piper’s mom. What she needs from me when she begins to struggle is not for me to brace for the next blow. She needs me to get on her level and try my hardest to see the world as she sees it at that moment. In doing so, I am embracing her being.

Sure, yesterday started with a struggle. But it ended with a smile, many laughs and a promise for more joy, today.

Follow this journey on drivingthestrugglebus.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Supercuts Employee's Simple Act Helps Boy With Autism Feel Comfortable Getting a Cut

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Kathleen Tarzwell tweeted a photo of her 7-year-old son Braeden, who has autism, at Supercuts in Media, Pennsylvania, after he received a haircut on Saturday. Tarzwell credited their hairdresser, a woman named Christine, for her patience — and for pretending to give Braeden’s stuffed platypus, Perry, a buzzcut.

Because of sensory overload and the anxiety surrounding the experience, haircuts can be difficult for people on the autism spectrum. So watching Perry “get a cut” helped comfort Braeden.

“13 minute haircut today thanks to Christine and Perry being brave enough to get his haircut too,” Tarzwell wrote on Twitter.

“Before going to Supercuts… Sometimes I would even allow [Braeden’s] hair to grow for six months to avoid putting him through what looked like torture to him,” Tarzwell explained to The Mighty in an email. “Christine always likes to physically show him the clippers won’t hurt. Perry the platypus is everything to Braeden.”

Tarzwell has been vocal about showing her thanks to those who have made a difference in her son’s life — her overall mission is to promote inclusion for people with autism. Last month Tarzwell wrote an article on The Mighty about a local waitress whose kind act (again including Perry) moved her to tears.

“When Braeden saw Christine cape Perry like she does with him, and ‘cut’ his fur, it was like reliving the day at Bittersweet Kitchen when the waitress brought Perry a plate of food,” Tarzwell told The Mighty. “We need more Christine the Hairdresser and Heidi the Waitress in the world, because all anyone wants, autism or not, is to feel accepted.”

Tarzwell sent the photo and story to Love What Matters yesterday, which was then shared on their Facebook page. She again expressed her gratitude, and revealed that the family previously had some very negative experiences with hairdressers:

My son has autism, haircuts have been somewhat challenging for him. We spent 4 years bouncing from salon to salon, a new one almost every haircut – and we’ve even been asked to leave mid haircut at a barbershop. We’ve been going to Supercuts in Media for almost a year now, and I want them to know how truly grateful I am for their patience, understanding, and more than anything acceptance. Christine has become our regular hairdresser and today she gave Perry a haircut too, and that means the world to Braeden.

“My son has autism, haircuts have been somewhat challenging for him. We spent 4 years bouncing from salon to salon, a…

Posted by Love What Matters on Sunday, March 27, 2016

 

And this isn’t the first time a Supercuts staffer has stepped it up in the salon with a client. In January hairstylist Julia Werder received praise from Laura Connerton for getting on the floor to cut the hair of Connerton’s 11-year-old daughter, who has a rare genetic disorder and autism.

h/t WPOC/Michael J

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When I Felt Myself Going Backwards on a Field Trip With My Son With Autism

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“After spending time with Ryan and according to the testing completed, I believe the best clinical diagnosis is Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS, a form of autism.”

Then, silence. Nothing.

The only noise was the sounds of birds chirping and cars driving by outside. Cars filled with people. People who didn’t have this six-letter word beginning with A just come into their life. I wanted to get into the car with those people. To drive away, far away, and pretend the words uttered by this compassionate psychologist didn’t just change the rotation of my world.

Kathy Hooven and her son, Ryan.

In that moment, I didn’t have the strength to stand, let alone try and force my way into a stranger’s car. My knees were shaking, and I had that awful weak feeling in my chest. The silence in the room was deafening. The cars driving by on the street below were screaming and felt like mythological sirens trying to lure me away to some place, any place, other than where I was sitting. Then, finally, the sounds of birds and cars were once again drowned out by the psychologist’s kind, gentle voice wondering how we “felt” about the diagnosis.

I remember “feeling” sad, confused, angry, lost and alone. I remember crying — in the office, in the parking lot, in my family room, in my bedroom, in my husband’s arms, in my best friend’s arms. Everywhere.

It wasn’t until a few days after we first heard the word “autism” that the strongest “feeling” I had was the maternal need to protect. My son Ryan needed me, and no matter how much I wanted to escape this new reality, I wasn’t going anywhere.

In the days that followed when I felt like I was drowning in a sea of tears, I never once doubted my love for my son or worried how I would treat him, but I did worry about how others would treat him. I knew escaping in a stranger’s car wasn’t the answer. This was my son, his life, my life and our journey. I had to figure out how to get him where he needed to go, and there was no way I would let him go at it alone. I just wasn’t sure he far we had to go to get “there.”

***

You know when you are driving and it feels like you will never get where you are going? You distract yourself with snacks, coffee, music and whatever it takes to get you there. In fact, you become so distracted that you believe you must certainly be close, then you look at your GPS and discover you still have a long way to go. In fact, you wonder if you will ever get there.

There are moments on this autism journey where I believe I have come such a long way — then I volunteer to chaperone a school field trip and look up and realize I still have so much farther to go. Only, unlike my other road trips where I want to punch my GPS for reminding me I’m not even close, there is no anger, no road rage — just disappointment and surprise… in myself.

Ironically, it was a field trip last week that made me realize that no matter how far I have come, I still wasn’t there yet. In fact, there was one moment when I wondered if I had even gotten into the car at all. Yes, while I fulfilled my role as chaperone on that field trip, I realized I must not have even entered the destination into my internal GPS because in that moment I realized there are still times on this journey I haven’t even left the driveway.

I pride myself on raising awareness and acceptance of “different, not less.” I preach it in my writing, in my training, in my life, and yet as I watched my son trying to fit in with kids who weren’t so different, I kind of disliked “different” and shamefully longed for “same.”

I always have field trip anxiety. I know Ryan struggles to find out where he fits, but knowing it and seeing it firsthand are two very different things. As all seven boys in my group walked into the auditorium to watch the play, Ryan “scripted” (or repeated the same phrase exactly how he heard it) of a Yoda cartoon character he had been watching on YouTube. Much to my surprise, one boy chuckled and scripted back. The others, however, looked at one another with unspoken words. The words didn’t need to be spoken. They were written all over their smirks, expressions and sidelong glances.

The scripting went on a few more times and got louder each time, and the unspoken words from his classmates got louder, too. Watching this exchange was painful.

Even though I longed to run, the “feeling” to protect was much stronger. I smiled and asked Ryan what the script was from and told him how good he was at it. But the way I nervously looked at the other boys staring at him, hoping for their approval of his scripting, made me feel like a fraud.

Wait, what was happening to me? This isn’t who I am. This isn’t what I advocate for, what I blog about or what I wear on my sleeves. But in this instance, I wasn’t an autism advocate, an autism blogger or even a mother of an autistic child. I was just a human, and sometimes as a human, I’m vulnerable to forces outside my heart and my beliefs. And sometimes those forces kick me in the gut and slap me in the head. Just because I love, advocate and accept “different” doesn’t mean that “same” never crosses my mind.

As always, I should have taken my cue from Ryan. He was smiling and happy. He was pleased that a few of them knew the YouTube video he was scripting and that one boy scripted back. I no longer felt the need to escape the situation, and in the end, I sat and smiled at how far he has come — even if I was still stuck in the driveway.

Just like that same little boy in the psychologist’s waiting room all those years ago, I have always known to follow his lead. Ryan has always shown me where we need to go and doesn’t concern himself with how far he has come. He just sits back and enjoys the ride.

Regardless of how far I have come, what matters most to me is how far Ryan has come and how far he has gotten both of us on this journey. I’m so glad I didn’t jump out that window and hitch a ride with a stranger all those years ago. Oh, what I would have missed.

​Yes, I admit I never set my GPS for this journey, but even if I had, no device, no person or no “expert” could have told me which way to go. And yes, there are still moments when I can honestly and shamefully admit that I long to go where everyone else is going. Most of the time, though, I just wish someone would give me exact directions and a detailed map to follow so I know where we will one day end up.

In the end, I have only one person whose lead I must follow. Ryan doesn’t need a satellite or an “expert” to show him the way. He’s finding his way on his own, and in the process, he continues to guide me, no matter how many times I wander off course and get lost.

While traversing this journey I have learned that regardless of how far I have come, with Ryan by my side, I will always keep going until we are there.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When People Ask 'How Do You Do It?' About Parenting a Child With Autism

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“Brian, in five minutes we’re going to start getting ready to go to Corbin’s school to see his project.”

My request is met with crying. Transitioning out of the house lately has been rough. The typical transitions, like going to school, are no big deal. But anything that doesn’t happen on a regular basis immediately sets our son into panic mode, regardless of how much prep work we do before the transition.

I set the timer, and pull up a picture of the school on my phone to show him.

“Corbin is showing his Albert Einstein project at the Academic Fair. We have to go support him.”

He yells at me a little louder.

I wait until the timer goes off, and he slams the laptop closed.

He has tears coming down his cheeks, and he’s flapping his hands with anger.

I pull him into my lap and rock him. I whisper to him, “You are safe. It’s OK. You are loved. You are safe.”

He leans back and yells louder and hits his cheeks again. I admit I wince a little as the hands reach out, worried that I might also get a hit. But I don’t. He’s still in control enough that he’s not at that point.

I stand up, and his legs are wrapped around my waist. I stumble across the room to grab his favorite essential oil blend. I ask him if he wants his oils. “Yeah. Oils,” he responds between sobs.

I lay him back on the couch and give him a foot massage while applying the oils. I practice deep breathing, and I hear him trying to as well.

My husband and I exchange that look. We’re both thinking it. We’re not saying it out loud. Should one of us stay home with him? But no, we won’t. We have to give it a go. We have to support our oldest son and his hard work. We’re a family, and we have to do these things together. We have to help Brian be able to handle these outings.

I stand up and he cries a little and reaches out for me and again wraps his body around me.

We walk around the house like that. With me bent backwards a little to handle the weight, I point to the items we need for our outing with my husband following to collect them all: his talker, noise-cancelling headphones, a favorite animal, my cough drops and my phone.

We stumble out to the car, and I place him in his booster seat. His cheeks are still tear-streaked, but he buckles himself in a bit more quietly.

I’ve been fighting a cold, and I cough the entire car ride to the school. By the time we arrive, our breathing both seem to be regulated.

My husband meets us in the school parking lot. Like any outing that we are unsure of, we bring two vehicles. We have to be prepared that someone might have to leave early. Brian is at my feet with his hands up to me, “Up, up,” he pleads. Knowing I can’t carry him anymore without another coughing fit, I tell him no.

My husband offers a ride, but unfortunately in moments like this, Brian refuses him and walks on my feet with his head tucked into my stomach, trying to be as close to me as he possibly can. We walk into the school with this awkward gait.

Then we enter the school, he finds his brother and an inner switch clicks on. And he is OK with this transition.

And we hang out at a very crowded, busy, noisy environment for an hour and a half with just an amazing sweet, happy boy with autism.

The question I get the most from strangers, from people I’ve known for decades, from curious people and from well-meaning people is, “How do you do it?”

I often respond, “How do I not do it?”

But this is how we do it. We meet the challenge with a plan, with patience, with calmness, with compassion, with empathy and with love.

This is our life. This is our boy. Our amazing, beautiful, perfect child that has been handed challenges that we can’t fully understand because we don’t have the same challenges. A boy who doesn’t have a choice in how his body and his mind and his disorders react to simple transitions and input in his life.

So we meet him where he is and we love him where he is. We offer a hand to help him jump each hurdle as we meet it, and that’s how we do it.

How could we not do it?

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Best Kind of Relationship When You Have Autism

Hey guys, Andrew Levin here with a new video talking about the best kind of relationship you can have when you have autism.

If you have any ideas for videos you’d like to see e-mail me at [email protected]

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To Robert De Niro, From Someone on the Autism Spectrum

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Dear Robert De Niro,

As someone on the autism spectrum myself, I want to thank you. In fact, my appreciation has nothing to do with the film.

I was not diagnosed until I was about 15 years old (I’m 26 years old now). Those first 15 years were a long battle full of misunderstandings and meltdowns. It seemed like everything I did was wrong, and I didn’t know why. When I finally received the diagnosis, people began to understand me more. And although I still have many challenging moments, things have become easier over time.

I cannot understand what it is like to have a child on the spectrum because I do not have a child on the spectrum. Nor can I speak for anyone else other than myself. However, I can say that I wish I had received my diagnosis sooner. I wish people had known. I feel it would have reduced the amount of stress and anxiety I had from the lack of understanding.

Since I was diagnosed, I have become a major advocate. I try to spread awareness as much as I can. I try to focus on the things I’m capable of and spread hope. There are still times when it’s difficult and I get frustrated and just want to say “I can’t do that.” But we all have these bad days – some more than others.

In the end, I just want people to know. I want them not to be mad at me when I need to take a break after only a few hours of work. I want them to realize I’m not overreacting to the firetruck going by, but that the siren really hurts my ears. I’d like them to give me a moment to process what they’ve said in a conversation so I don’t misinterpret it. In the end, I really just want people to be more autism aware.

This is why I want to thank you for being a voice in the autism community. Thank you for spreading awareness, simply by stating that you know someone on the spectrum. Thank you for helping everyone to become more aware.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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