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

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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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Robert De Niro Removes Anti-Vaccine Documentary From the Tribeca Film Festival

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Robert De Niro made headlines earlier this week when it was announced that anti-vaccine documentary “Vaxxed: From Cover-Up to Catastrophe,” was slated for an April 24 showing at the Tribeca Film Festival. After generating a great deal of criticism, it was announced on Saturday that the documentary was removed from the festival lineup.

De Niro, who co-founded the festival in 2002, released the following statement about the decision:

My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for. The Festival doesn’t seek to avoid or shy away from controversy. However, we have concerns with certain things in this film that we feel prevent us from presenting it in the Festival program. We have decided to remove it from our schedule.”

A day earlier, he’d responded to criticism over the documentary’s inclusion in the festival, saying:

In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However, this is very personal to me and my family and I want there to be a discussion, which is why we will be screening ‘Vaxxed.’ I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

“Vaxxed” is directed by Andrew Wakefield, the former doctor behind a 1998 study published in the medical journal the Lancet that claimed to find links between autism and the MMR vaccine (measles, mumps and rubella). The study was retracted by the Lancet in 2010. Wakefield lost his medical license the same year.

Lead photo source: Thinkstock Images

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When Advocating Becomes Bullying in the Autism Community

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As someone on the autism spectrum, I definitely consider myself to be a major self-advocate. I truly love sharing my experiences. My hope is that others can take what I’ve been through and apply it in a way that may help someone else on the spectrum.

Sometimes it can be difficult to be an advocate. I need to remember that I’m not the only one with an opinion. I need to remember to be respectful, even if I disagree. But I’ve been seeing another issue lately. That issue is when I see others — both on and off the spectrum — attacking each other and complaining about the things they don’t like. I don’t just mean disagreeing. What I’m seeing is almost bullying.

As World Autism Awareness Day draws near, I have seen multiple strong-worded posts about how people who aren’t on the spectrum should and shouldn’t act. And they were posted in a support group for people who aren’t on the spectrum. I saw other posts bashing people simply for trying to show support to an organization of their choice.

I see a lot of people complain about the way others spread awareness (and I will be the first to admit that I’ve been guilty of this at times, too!). But I think there comes a point where the autism community needs to stop criticizing the way others advocate, and start to just ignore those actions if they really dislike them that much. Instead, just advocate the way you would like to. Stop telling others what not to like, and spread the love of what you would like to see instead.

Let’s be happy for others, instead of taking positive stories and turning them into something to be unhappy about. Advocating shouldn’t be about tearing down the people who you disagree with. It should be about supporting others who you appreciate and lifting them up.

I’m going to try to remember to do this more often. It’s tough at times, but I am tired of the hate. There’s a fine line between taking a stand and being negative or even downright rude or mean.

April is Autism Awareness Month. Let’s remember to be kind to one another when we spread autism awareness, acceptance and understanding.

The Mighty is asking the following: Describe a moment you were met with 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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