How Our Son Responded When We Told Him About His Autism Diagnosis

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Our son is fully aware of his autism diagnosis and has been for years. As we’ve learned and he’s learned, we’ve made a habit of sharing our knowledge together as much as possible (and as appropriate).

After we received his diagnosis, we considered how to tell him, and while we were still digesting the news, one of my colleagues arranged a lunch date with me, herself and her adult son on the spectrum.

When talking about how to tell our son about the diagnosis, his advice was: Don’t wait.

We found ourselves stumbling into the conversation only six weeks after we received the diagnosis.

My husband and I were not yet ready to have the discussion, but it became clear that our son needed to know after he announced he “was stupid” because he “kept getting sent out of the classroom” because he “couldn’t do the work.”

I hated his coming to that heartbreaking conclusion. The conversation had to take place right away because our child was in pain and we needed to do something about it.

I think we did pretty well at not using too many technical terms, and we emphasized all the good things that came with the way his brain is put together.

We were specific, as much as we could be in the early stages of our understanding, about the gifts and challenges he experienced.

We also talked about how we would work as a team on his challenges, giving him tools and strategies to eventually manage them on his own.We talked about his strengths, about people on television or famous people who also have autism and the successes they have experienced. He liked the idea that Einstein may have had autism.

Most importantly, he seemed relieved to know his struggles at school weren’t because he lacked something and instead stemmed from coming at things from a different direction.

It has been four years almost to the day since that talk, and when I prepared to write this article I asked him what he remembered of the conversation.

“Nothing,” he answered. “It is like I have always known that I had autism.” I like to think that means we did our job well.

And for us the conversation doesn’t really end. Like all important parent-child conversations, it isn’t a sit-down-one-weekend-and-you’re-done kind of thing.

As he grows and his developmental understanding becomes more sophisticated, with every challenge and every success, we try to weave it all into a cohesive tapestry that makes sense to him.

Our goal is 360-degree knowledge of himself that is based in self-love and constantly-reinforced total acceptance.

Follow this journey on Autism Mom.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. 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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7 Things Parents of Kids With Autism Want Teachers to Know

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When I’m on Facebook talking to people, one of the topics that keeps coming up is teachers and how many don’t understand children with autism. I don’t want to paint a negative picture of teachers, because most of the time they’re great, but every now and then, misunderstandings happen and mistakes are made.

So I asked this question in a Facebook post:

What, in your opinion, are the most important things a teacher should know about autism?

Here are the seven most-liked comments.

1. “Understand that ‘high functioning’ kids can hide their ‘symptoms,’ but need just as much support.” — Hattie Hodkin

People used to say to me that they would forget I was autistic because of how well I hid my traits, but they were reminded on my bad days. The signs that a day or situation is challenging for a child can be subtle. We need to look for these subtleties and teach teachers what to look for, too.

Sometimes we miss women on the spectrum, as they may be pressured by society’s expectations to hide their many traits. When they appear very anxious, people often mistake it as mental illness instead of recognizing it as a part of autism.

2. “I think they need to know that some children with ‘high functioning’ autism struggle with coming to them and saying ‘I need help.'” — Sarah Forrester

I had a parent tell me their child was coming home stressing about school work. They didn’t know what to do or didn’t understand the wording of the tasks. When faced with tasks they don’t understand, autistic people can get confused and anxious. Then our imaginations are impaired by stress, and the concept, in that moment, to solve the problem doesn’t exist.

3. “Listen to the parent of the ‘high functioning’ child [when they say] they are not being naughty. Kicking arms and legs out is a sign of excitement/anxiety… Teachers need to be educated, but the key thing is to listen to the parent or carer of the child, as we know them best.” — Adama-cherry Devill

I believe that all schools should have fidget toys. The child with autism can still listen to you while holding the fidget toys. If I was a teacher, I would much rather have a child holding a Tangle than swinging their arms and legs around.

4. “Get some facts. Learn about autism, get more training and don’t tell my son to look up at you.” — Helen Todd

I’d quite like everyone to do this — not just teachers but all the other professionals who work with people who have autism.

5. “I would love my son’s teacher to understand the absolute necessity to keep to a timetable/schedule. He depends on it. To appreciate how clever he is, and to give him more advanced work when he needs it. To address him directly, and understand if the teacher speaks to the class generally, my son may not understand she means him as well!” — Kerry Burton

Explain everything in layman’s terms: simple, direct and jargon-free. Autistic people often take things very literally. Avoid metaphors, similes and idioms.

6. “More understanding, giving your child time to process what has been said rather than pushing for an immediate answer. [My son] always needs a good few seconds to process conversations. Teachers need more patience.” — Kate Taylor

Autistic brains often struggle to do multiple tasks at the same time. When we are asked a question we have to:

  • Take in the words, know what they are.
  • Generate the meaning of the question
  • Then find the answer.

That’s a lot to do in a short amount of time, so let’s be patient and give them a moment to answer.

7. “Don’t ask a child to look at [you], [A lack of eye contact does not mean they aren’t listening]. Really winds me up, that.” — Joanne Charlton

Eye contact is very uncomfortable for me. If a teacher says,”Look at me!” I just look at his forehead. But if you’re a teacher say, “Look this way” — It’s a lot nicer. A child with autism who isn’t looking is probably still listening.

Those are my most popular responses. Teachers, please take note!

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. 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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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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