Kathy Hooven’s son, Ryan.

When My Son With Autism Said, ‘I’m Not Very Good With Words’

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My son Ryan is trying. He is trying so hard. I swear I can almost see him searching through the files in his brain.

These files of his seem to be scattered in no particular order, which makes retrieving the information within the files an arduous task. More often than not, he gives up, but on this day, he kept searching. As the words scrambled and cluttered on his tongue, I reminded him to take his time and that I wasn’t going anywhere.

Kathy Hooven’s son, Ryan.
Kathy Hooven’s son, Ryan.

Ryan finally found the school file and shared what happened in school with me. Then, exasperated by his efforts, he looked out the window and sighed, “I’m not very good with words.”

I quickly assured him he’s awesome with words. I reminded him how amazing his brain is and how he can find the right words from a movie, television show or YouTube video and make those words fit just the right conversation.

I told Ryan that although my brain files seem to be more orderly and “words” seem to come more easily for me, my brain can barely remember what I ate for breakfast that morning, let alone repeating the perfect phrase (or script as we like to call it) for a conversation.

We’re both good with words in our own unique way.

Ryan didn’t look convinced. I wanted him to understand that even though he may have heard those words somewhere else, they’re still his words and part of the way he communicates, and he is indeed good with words. So I gave him some perfectly awesome examples.

I asked him if he remembered when we were driving around Grammy and Pappy’s town, looking at all the old Victorian-era mansions, and I was “oohing and ahhing” about the size, and in his best Shrek voice, he said, “Sure, it’s big enough but look at the location.” We all laughed until we cried (him included). His words were so good that I almost wrecked the car into one of those Victorian mansion’s fences, which wouldn’t have decreased the value of the mansion since, according to Ryan (and Shrek), it’s all about location, location, location.

He smiled. A little.

Then I reminded him about the time we were eating dinner and asked him if he liked the cake I made for dessert. In his near perfect Cousin Eddie impersonation from “Christmas Vacation,” he shouted, “This is goooooood!” Again, he finds just the right words at just the right time.

He smiled again. Bigger.

I asked him about the time at the beach when we couldn’t decide where to eat dinner, and we wondered what he wanted to eat. Suddenly, Jim Carrey’s Fire Marshall Bill character was in the car with a “He’s cooking fishsticks!” quote. And then we knew just what you wanted to eat. Those were good words that made us all giggle.

He laughed. Quietly.

My favorite was when we saw a rainbow and my daughter Emma said, “Water plus sun equals a rainbow.” And Ryan piped up and replied, Rainbows are a result of refraction of moisture and light in the air,” sounding just like his favorite cartoon character at the time, Gumball. Those words were so good that Emma and I had no words, which never happens.

He laughed. Louder.

And then I reminded him of something he was too little to remember. Once when we were snuggling in his bed, he wrapped his arms around me and told these words that were so good they went straight from my ears to my heart: “I wish you were a human who could live a thousand years.” Those were his words, and they were beautiful. You are good with words, Ryan.

He grew silent. Again.

Worried I hadn’t proved my point, I continued with more and more examples of times he was good with words and how those words — those scripts — were his way of communicating and that my words are no better, no more effective, than his.

Ryan perked up. He sat up higher in his seat. Then suddenly, it seemed as though his brain files had order. Ryan gave me this script and that script. He used this voice and that voice. He smiled. He laughed. He believed.

As we approached the house, knowing the ride and this conversation were quickly coming to an end, Ryan never said, “Thanks, Mom. You’re right, in my own way, I am good with words.” But he didn’t need to because his smile and his Fire Marshall Bill voice as he opened the door and yelled, “Let me tell you something,” said it all.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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3 Words That Helped Me When I Thought I Let My Son With Autism Down

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I got lost heading back home from a meeting recently. It would have been fine, except I had to be home to meet my son Dominic when the school bus dropped him off. I thought about calling my husband, the bus company or one of my friends to help me, but in my mind I thought I could make it home before Dominic.

I knew the bus driver wouldn’t leave him at our house alone because I signed a form at the beginning of the school year saying we wouldn’t permit that.

Cathy B. with her son, Dominic.
Cathy B. with her son, Dominic, who has been riding the bus since he was 3 as seen in this photo. He’s now almost 12.

But what if it was a different driver and he didn’t know to do that? What if the driver didn’t know Dominic is on the autism spectrum and has epilepsy? The feeling of fear was beginning to set in as I continued to drive towards our house. I didn’t have the bus company’s phone number or the bus driver’s cell phone number. I could have stopped on the side of the road to look it up, but again, in my mind, I thought I could beat the bus home.

When I got home, it was a full 10 minutes past the time Dominic is normally dropped off. Neither Dominic nor the bus were at our house. Now panic started to set in. For a split moment, I had no clue where he was. Oh my, that was a feeling I hope to never have again. I ran inside and checked on my home phone for a message from the bus company or the driver, but there wasn’t one.

I immediately picked up the phone, called the bus company and they said, “Is your son’s name Dominic?” I said, “Yes.” They told me the bus driver kept Dominic with her as she finished her bus route and would drop him off momentarily. Whew. I was shaking and had to sit down. As the bus pulled up and Dominic stepped off, all I could do was profusely apologize to the bus driver and tell Dominic, “I’m sorry, I’m sorry.”

I was beyond distraught. I felt like I had let my son down. I spent the next several hours rehashing the event in my head. What kind of mom was I to not have been there for my son with special needs? What kind of mom does that?

During my regular evening conversation with my dad, I kept telling him about what had transpired with the bus. After about 10 minutes, my dad said, “You’re only human.” Wow, that certainly helped me put everything back in perspective.

I try so hard every day to be everything to everybody that I don’t always cut myself enough slack to make mistakes. Just those three words, “You’re only human,” helped me realize I could forgive myself. It’s OK not to be perfect.

Sometimes as a caregiver, it’s hard to step outside of ourselves and realize that, yes, we’re doing a great job, and once in a while, things like not being there for your child’s bus may happen. It doesn’t mean you don’t love or care any less about your children with special needs. It means you’re human.

Follow this journey on Bountiful Plate.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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What I Want My Doctors to Know as Someone on the Autism Spectrum

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Dear doctors and medical professionals,

There are some things I wish you knew. I have autism. This can make some things more difficult for me. Change, waiting and communicating can be difficult — just to name a few. The medical setting can be intimidating for anyone, but as an individual with autism, I might find it to be even more intimidating sometimes. There’s just so much going on, so many people, etc.

I’ve found that some people in the medical world don’t always understand me or my autism. They don’t quite know what to do, or how to do it; it’s a learning experience for them, too. Autism may be unknown for those not on the spectrum, and anything unknown can be scary. Like my amazing doctor explained to me today, “It kind of makes them anxious and can be anxiety-provoking, similar to how you experience anxiety.” I thought about what Dr. Ann said, and it stuck with me, it made so much sense; yet it still disappoints me that there’s still so much work to be done when it comes to teaching others about autism. But I don’t stay disappointed for too long; I use it as an opportunity to make a difference and a reason to teach others.

Here are some things that I would tell medical professionals:

Please treat me like a person, like you want to be treated. See me for who I am. See my autism as a part of me but not all of me. Support me, but please don’t judge me.

Think about what it’s like in my shoes, and how scary the hospital or doctor’s office can be. Communicating how my body feels has always been difficult for me. When asked if something hurts or how it feels, I may reply I don’t know. It’s just so hard to put my body’s feelings into words. Be patient, give me extra time to type on my iPad. Please don’t rush me.

My parents and caregivers are often my interpreters. Please listen to them. Please don’t argue with them. They simply want what is best for me. Please help us figure out what’s wrong together as a team.

Please, try to connect with me. Try to help me. If you are unsure, ask. Please don’t give up on me.

I can teach you a lot as we travel along the medical journey. Sometimes it may not be easy, but it is rewarding. You will likely look back and know you made a difference. You might learn that I taught and helped you as much as you taught and helped me. Please know I’m grateful. I’m thankful, and I appreciate those who go the extra mile. You matter, you make a difference in my life. Thank you for being a part of a medical family I never expected to have.

Thank you Dr. Ann, and the rest of the clinic staff who have truly connected with me and helped me in so many ways. Thank you, from the bottom of my heart. Together we will teach others that anything is possible.

a woman with her doctor and two other members of her medical team
Chloe and her medical team.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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When My Father Finally Accepted That I Have Autism

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I was first diagnosed with autism nearly four years ago at the age of 22. I started to figure it out when I was about 14. That was when I realized I had been having trouble in school the past few years, although not academically. I identified eye contact as difficult and uncomfortable and began to realize how much I disliked being touched. I realized how much I was bothered by little sounds that no one else seemed to notice. I remember going to a brand new high school and saying that the lights were loud and no one voiced their agreement. I remember the stress I would feel when the bell would go off to switch classes. It wasn’t the bell that bothered me as much as the impending overwhelming walk through the hallways that would take me most of the next class to recover from.

It didn’t get better in college. With stress, my symptoms and experiences continued to intensify. Away from the comforts of home and small-town family connections, I struggled. I remember taking one of those Facebook quizzes. It was something like, “Are you autistic?” I scored very high. I would get so anxious with the start of a new semester because of the new routine that came with it. I loved my routine and hated any change that came. About the time I would get used to my new routine, it would be a new semester. I’d sit in a corner and rock for as long as I could.

Finally, after I graduated college, my new psychiatrist mentioned autism. I did more in-depth research and realized that I identified strongly with this diagnosis, as opposed to some of the others I had been given.

A few months ago, I met a new psychologist who put me through a battery of tests to confirm the autism diagnosis. It was confirmed along with a couple other diagnoses.

In the two years between my first diagnosis and my confirmed diagnosis, my parents said very little on the subject. Despite my identification with and acceptance of the diagnosis and my siblings’ acceptance of autism, my parents seemed to disagree. Even after my mom met the new psychologist, I got the same vibe. A couple weeks ago, my dad called after attending a continuing education session on autism. He said he was sorry.

He said that he got it and that he was sorry they had missed it but that he saw it now. He said he wished they had been able to provide the appropriate support that I needed. He also said that he was even more proud of me now that he understood I was autistic, because of everything I had done without the help of my parents.

When I hung up the phone after talking to my dad, I cried for a while. I don’t cry often, but I could do nothing else with the overwhelming relief I felt knowing that my dad finally got it. My dad agrees with the diagnosis now. He accepts my autism diagnosis and loves and accepts me for who I am. He is proud of me. Since that phone call, I have felt so much lighter. I didn’t realize the weight I was carrying as a result of my parents’ lack of acceptance.

So for others with autism looking for your parents’ acceptance: Don’t give up. Be you, believe in yourself, and believe that you are deserving of the support and accommodation you need to make it through the daily demands of this foreign world.

For parents who don’t believe their child or adult child has autism: Listen to your child first and the medical professionals second. You may think that you are the only expert on your child, but the reality is that your child might be the expert, and you the invaluable assistant. Your child has likely felt your disapproval and has certainly felt a lack of belonging in this world. There is no shame in an autism diagnosis. Your child wants nothing more than your love, acceptance and support.

Follow this journey on Erinmmckinney.com.

Lead photo source: Thinkstock Images

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A Child Doesn't Need Words to Say 'I Love You'

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Another Mother’s Day has come and gone. My children have long-since drifted off to sleep, and I’m quietly reflecting on the many ways they brought joy to me today. Some of this joy was the result of intentional acts of kindness, including a beautiful bracelet made by my oldest daughter, and a heartwarming “All About Mom” book, filled in by my kindergarten-aged son. These were gifts that my children made in advance and gave to me with great anticipation. They knew it was to be a special day for me. From the moment their feet hit the floor, they were active participants on a mission to make Mom feel extra-loved! Their mission was a great success, and I took every opportunity I had to let them know it.

My youngest daughter, on the other hand, didn’t appear to understand it was Mother’s Day. She’s 3 years old and on the autism spectrum. To her, it was probably just another day. Still, she, too, managed to make me feel loved beyond measure.

There are so many ways in which every child on the autism spectrum, verbal or nonverbal, is capable of saying “I love you.” What they need is for us to realize that we can listen with more than just our ears!

Many moms of other children with autism have opened up to me and have shared their stories. I’ve heard the heartbreak in their words as they have described how it feels to know they may never hear the voices of their nonverbal children. It’s humbling, to say the least. I’m incredibly grateful that I have heard my little girl’s voice say, “Goodnight! I love you!” From those mothers, I have learned that children with autism can express love in a multitude of ways, often without ever uttering a word.

When a child with autism has a great day, socially, yet breaks down the moment she is in the safety of her own home, she may be saying, “I love you enough to let you see this. I feel safe with you.”

When that same child clings to you and sobs over the most seemingly trivial change in routine, she may be showing that she recognizes security in you. She isn’t just being difficult or finicky. She can be saying, “I love you, and I’m not letting go, because right now, you’re the only one who I know can make it better.”

When a child with autism smacks you in the face as you pretend to cry during play, he isn’t being cruel. He can be expressing distress over seeing you distraught. He can be saying, “I love you, and I can’t stand to see you sad, Mommy.”

Yes, my daughter can speak, but she also does each of the things mentioned above. Instead of being hurt by her behavior, I’ve learned that I need to look beyond the surface and listen to what she’s telling me with her actions. They’re all rooted in love. This is not always easy to do. I’m far from perfect and often become frustrated during these outbursts, but I am learning to hear the things she’s not saying in times like these.

On Mother’s Day, her actions said “I love you” incrementally louder than any words she’s ever spoken. I put a different spin on Mother’s Day, this year. Since my children are what make me me “Mommy,” I gave each of them a gift — a small wooden photo of them with me. At bedtime, I found my youngest daughter in her bed, snuggling with hers.

In so many situations, you can feel an overwhelming expression of love without having to hear it expressed verbally. There is no greater feeling than looking at my little girl and knowing that I am loved and adored, just for being me.

young girl lying in bed looking at frame photo of her with her mother
Angela’s youngest daughter.

Follow this journey on drivingthestrugglebus.

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When My Son With Autism Melted Down on a Plane, We Got a Surprise Ending

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I did not see this coming. I should have, but everything had been going so well. I was not prepared for it. We had just found our seats, and I was already mentally organizing our bags and figuring out what needed to go in the overhead lockers and what I needed to take out for use during the trip. Our seats were the four middle ones, nowhere near a window like on the last flight. His meltdown started. My son was screaming, kicking, hitting and doing everything he could to get away. I dropped everything I was holding and focused on confining him to the small space of our seats. I was struggling to hold on. He may be a skinny kid, but he is strong.

I call them “Bugatti meltdowns.” They go from zero to roaring past you at full speed leaving you wondering what just happened. Then you realize you have to catch and calm them.

My immediate thought was that we were going to be kicked off the plane. My biggest fear in planning this trip was suddenly looming over us.

A few weeks before, I’d seen the news about a girl with autism and her family allegedly being kicked out of a United Airlines flight. Being our first trip on an airplane with our boys, who are also on the autism spectrum, I was really afraid of the same thing happening to us. Especially since we had six flights to take. Six chances to get booted off. At least the family on the news was flying within the U.S. We were a continent away from home and still one more continent and yet another flight from our final destination.

One passenger walking past interrupted my thoughts by yelling even louder than my son, enough that everybody could hear: “You should know better, you are old enough.” The woman sitting behind us laughed and nodded in agreement. The mother bear in me wished I could let go of my son and tear into them for being so ignorant and judgmental. I could feel the anger rising from my belly.

That momentary focus on the two passengers and my own anger gave my son just enough leverage to shove me backwards into the aisle, smacking onto the man shuffling past. He responded by spewing F bombs and other profanities. I’m not sure if they were directed at me; it could have been just how he responds to everything, but each one landed on me like a guided missile. I felt angry and deflated.

I saw the flight attendant talking to my husband, no doubt telling him we would have to get off the plane. We couldn’t possibly expect go through the next 12 hours with our son screaming like that. I accepted our being kicked off as the inevitable ending, but until the police escort arrived, I had to focus on one thing, helping my son calm down. The only way I could do that would be to calm myself down first. I’ve had plenty of practice getting meltdowns under control over the last eight years. I have a method that works well. I simply had to trust it would work on an airplane too.

I took a couple of deep calming breaths and continued to focus on my breathing while I escaped to my paradise — my beautiful beach where I could no longer hear the rude remarks of fellow passengers and not feel the fear of our impending ejection from the airplane. I needed to focus on my son who desperately needed me. He had lost complete control and needed my help to get out of the storm he was swept up in. I went from barely hanging on to him to hugging him tightly and finally to having him sit on my lap while I rocked him. The tears and the sobbing finally ended. The storm of the meltdown had gone on for “hours,” but the end was finally in sight.

By the time the flight attendants started their familiar mime of the onboard safety rules, pointing out the emergency lighting and doors, my son was fast asleep. He slept for almost 10 hours.

I learned from my husband that during the meltdown, comments from many of our fellow passengers suggested they couldn’t wait to see London’s bobbies escort us off the plane.

I also learned the flight attendant I had been so sure had already given the bobbies a call, had actually been working on a plan to move us to window seats once boarding had completed. This meant four strangers had agreed to give up their seats for us so my son would be more comfortable. In addition, when we landed several hours later, a kind grandmother who had been seated close to us stopped to chat. After confirming that my son has special needs, she was particularly concerned about his education. She wanted to know if we had managed to find a good school for him because he needed a school where people would understand him. Only after she heard that he was indeed in a good school did she gather her belongings and leave the plane.

My son’s meltdown in an airplane did not get us kicked off the flight; instead it moved complete strangers to acts of kindness. They did what they could to show us their support and humanity.

This experience was a reminder that I need to trust myself more. I actually sometimes know what I’m doing on the parenting front. And for all the judgmental people out there, there are some who are accepting and supportive. They are the only ones I have to focus on, the rainbows in whatever storm I may find my family caught up in. To all the rainbows out there, thank you!

The Mighty is asking the following: Describe a moment you were traveling that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. 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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