Posts Tagged ‘
Voices of Autism ’
Saturday, April 30th, 2011
Every day throughout April–Autism Awareness Month–we have featured a different reader-submitted story about living with autism. We received nearly 200 submissions, each of which tells a unique and moving story of children and their families struggling with the most difficult of circumstances and rising above their challenges. We thank everyone who shared their stories with us.
In this, the final installment of the series, we are featuring a true voice of autism: the transcript of an interview conducted by Emily Willingham, author of the blog A Life Less Ordinary, with her 9-year-old son, T.H., who has autism.
For obvious reasons, many autistic children are unable right now to articulate their lives. My son T.H. and I have discussed this issue before, and he has expressed a wish to let people know what autism is like, at least for him. (Responses are verbatim with non-sequitur interjections and vocalizations not included).
Q: Why do you hum?
A: It helps me get all my energy out. When I’m excited, I do that the most. It can also help me concentrate.
Q: When you make the “eeeeeee!” noise, what’s that about?
A: It’s when I feel good.
On Eye Contact
Q: Do you have trouble looking people in the eye?
A: Sort of.
Q: Why is that?
A: It’s sort of scary for me because I haven’t done it that much.
Q: How do you feel if you try to look somebody in the eye?
A: Weird. Tingly.
Q: When do you think you make faces the most?
A: When I’m excited.
Q: What does making faces do for you?
A: It makes me feel good because I sort of like doing it. I guess I have a lot of energy so I do all that stuff. (more…)
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Saturday, April 30th, 2011
Every day throughout April–Autism Awareness Month–we have featured a different reader-submitted story about living with autism. Today, for the final day of the month, we will be publishing two stories. The first story was written by Cheryl Ryan Chan, mother of Nicky. (The second story will be published in a separate post later today.)
Most stories about autism start out the same: baby born, normal development, toddler suddenly or gradually developmentally delayed. Ours is similar, but it takes a dramatic turn at age 6. It was then that our son began to turn violent and aggressive, toward himself and toward us. At first it was manageable; I could pick him up and carry him out of any situation, get him redirected quickly, or avoid a lot of situations altogether. But those “situations” became more frequent, and our world became smaller every day. The violence, the aggressions, the stress continued. Nicky had no language, severe social impairment, no cognition. His skills were that of a 9-12 month old.
We tried everything. Medications, diet and biomedical interventions, vitamin therapies, play therapies, social skills therapies, augmentative communication devices, speech therapy, sign language–we did them all. Some helped, briefly; most did not.
By age 10, our public school was begging us to place Nicky into a special school, where he could get the kind of therapeutic interventions he needed. We were determined to keep him with his peers, who loved him and did everything they could to help him. For us, removing him would be permanent. What if they forgot about him? We said no. (more…)
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Friday, April 29th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jen Troester, mother of Katie, 7, and author of the blog Living Life With a Side of Autism:
My daughter Katie is 7 and has autism. Her diagnosis came later than most, when she was almost 6 years old. For years the “red flags” we saw were either brushed aside or laughed off as diva behavior.
I had a baby that never babbled, never “told stories.” A child who ignored her toys and sat this close to the TV, rocking back and forth, to the same DVD over and over. While all the little girls in our playgroup were singing songs at 18 months old, Katie didn’t even have a handful of words. She didn’t parrot anything we said, didn’t point, didn’t respond to her name, and didn’t parallel play. If all the other toddlers were in a group, she was off in the corner, alone.
Katie started Early Intervention at 18 months for a severe expressive/receptive speech delay. At the time she was on the level of an 8-month-old. I remember when she was close to 2 years old, I got excited that she had finally said the word dog. After the excitement wore off, the pain of how far behind she was came flooding in.
Over the years, we visited several doctors and specialists, trying to figure out what was going on with our child. We kept getting the label of “developmentally delayed,” but what did that even mean? Was she going to outgrow this? Was there an underlying cause? What did the future hold?
When she entered preschool she began being labeled as “the bad kid.” The drama queen. She had intense meltdowns, and her lack of communication skills didn’t help. She never had a good day. Her teacher said she was a difficult child, and she was put in timeout every day. They even told her she wasn’t welcome in the classroom because of how she behaved–at 3 years old, and essentially non-verbal. (more…)
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Thursday, April 28th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jessica Watson, mother of Ashlyn, 15, and author of the blog Four Plus an Angel:
Ashlyn has a job. She is now manager of the girls varsity soccer team at her high school.
Ashlyn loves soccer and is the star of her Special Olympics team. When she first told me she wanted to be manager I was leery. She would be at school, after school hours, without support staff or an autism classroom or anyone who could do all of the things we do to make life manageable for her.
What if she has a melt down? What if it is too overwhelming? What if the coaches don’t give her enough guidance?
But I had to let her do it. Autism or not, she is a teenager and gaining independence is part of growing up, for both of us. So last week, after her first practice, she came to the car a bit disheveled, talking loudly, barely keeping it together before the car door shut.
Shoot, shoot, shoot, I knew we shouldn’t have done this. It was too much, too many people, too loud, too everything.
She said it went fine, but I wondered if somewhere in her mind she was unsure as to why she was the helper and not the player. When the next day of practice came, she wanted to go back, so I let her, not wanting to communicate the thoughts rolling around in my head and put something in her mind that might not already be there.
Day Two: She came out happy and a little overwhelmed, but no more so than after a typical school day. She said that she had a friend and the girls were nice.
Can we do this? Can she do this? She has a friend. (more…)
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Wednesday, April 27th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jenny Herman, mother of Joshua, 5, and author of the blog Many Hats Mommy:
I’m going to date myself here. Some of you will remember the “Happiness Is…” comics from the 70s. For example, “Happiness is a warm puppy.” Well, yesterday I had a chance to give my autistic son some happiness. A couple of months ago he pilfered a long velveteen bracelet box from my mom’s dresser. He would walk around rubbing it against his face, smiling or closing his eyes to enjoy the feel.
As the weather got cooler, and the chance to wear a sweatshirt came, Little Man realized that sweatshirts are soft inside, and he often requested to wear one. The other day in the grocery store he pulled a pair of fleece gloves off a rack and started rubbing them on his face.
Yesterday I said to him, “Do you like soft things, Little Man?”
“Yes, I do. I like soft gloves, and I like to wear soft sweatshirts. I like to sleep with a soft blankie. I like to eat soft things like marshmallows.” Hmm… he seems pretty self-aware to me.
“Would you like to go to Target with me and pick out some soft gloves?”
“YES!” And so our evening of fun began.
On our way into Target, Little Man noticed the outside wall of the store was covered in tiny rocks. “I want to feel this,” he said, and he proceeded to run his hand along the wall.
We found the sweatshirts. A few weeks ago I had purchased him a red stegosaurus dinosaur sweatshirt. Of course he loved the inside of it. The sweatshirts were still on sale, so I told him, “You can pick out another sweatshirt. Which one would you like?” I started showing him his five options. Can you guess which one he wanted? Not the football one or tough truck one. Yup, another red dinosaur sweatshirt.
We found the hats and gloves, and I showed Little Man that he could choose which color he liked. He chose navy gloves with orange piping and a grey stripe at the wrist. He picked the striped hat that matched the gloves. Stripes are among his favorites. He put them on, and was quite happy. (more…)
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Tuesday, April 26th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Josie Texidor, mother of Collin, 10, and Drew, 3, and author of the blog Lucyshouse Blog.
I am a mother. I have three kids, two on the autism spectrum who also struggle with sensory processing. This fact permeates pretty much all factors of our lives. It determines which events we choose to go to, when and where we vacation, and which foods we eat.
It has created constant stress around school. The phone ringing during school hours brings a jump to my stomach and an automatic, “uh oh” from my lips. What happened now?
Instead of sports or music activities, we’re more concerned with getting speech, occupational, or social therapy set up–and making sure insurance will cover it. Birthday parties, while exciting, are also scary. How will my child react to all the change and noise?
Autism brings us shaking heads and wagging fingers from elderly people in stores. It brings looks of disapproval from mothers with pretty little girls looking quietly at their dolls. Autism brings uninformed teachers labeling your child with a scarlet “D” for delinquent before they even get out of kindergarten.
Every parent has this to a certain degree. I know that. But what people without autism in their lives don’t understand is that the judgment is so constant. You know that every-once-in-a-while interaction you have because of a bad day? It is a common occurrence in our house. And not because our kids are bad kids–in fact, they’re amazing, thoughtful, creative and loveable. Just like your kids. They just have autism.
The issues autistic kids struggle with shows itself behaviorally. Some parents may think the way they parent would create a different outcome. But trust those of us in this growing autism community when we say that it would never happen. You can’t parent autism away. We’re all trying hard, day and night. We love our kids fiercely and fight for them daily. The very fact that we work so hard makes those “lazy parenting” looks sting even more. (more…)
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Monday, April 25th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Rachel Rosner, mother of Andrew, 13, and Leah, 9, and author of the blog Autism Maven.
Within a few minutes of meeting him, the speech therapist said, “I think he probably has autism.”
“What the hell are you talking about? Aren’t you just a speech therapist?”
“You mean no one has ever mentioned that before?”
“We are just here for a speech evaluation.”
We were meeting with a speech therapist at the suggestion of our pediatrician. The thought had never even entered my mind. I didn’t know what I didn’t know. She came right out with it, as if we knew already and were just waiting for the official word. I don’t remember the rest of our appointment, but I do remember standing in the parking lot with my husband. I had already strapped Andrew in to his carseat.
We hugged and cried, and I knew she was right. I didn’t know the first thing about it, but I somehow knew he had autism.
When my son was diagnosed he was not yet 2 years old. In retrospect, I consider us very lucky. At the time, I was completely blindsided. In that moment in the parking lot, I became an entirely different person.
I became the mom of a child with autism.
I read everything I could get my hands on. I pushed for services and therapies. I became obsessed with the need to know everything there was to know about autism and how it manifested in my child. I started with The Child with Special Needs by Dr. Stanley Greenspan and Serena Weider. Then I moved on to The Difficult Child by Stanley Turecki and The Out of Sync Child by Carol Stock Kranowitz, Raising Your Spirited Child by Mary Sheedy Kurchinka, and The Explosive Child by Dr. Ross Greene.
He started receiving services almost immediately. The only good thing about being treated so unprofessionally at the start was that we were fast-tracked and had a diagnosis in about a month. And the rest, as they say, is history. My life did not turn out the way I expected, but I would not have it any other way. I am a much better person and a much better mother because my children have autism.
To read previous stories in this series, click here. For instructions on how to submit your story, click here.
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Sunday, April 24th, 2011
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jessica Severson, mother of Graham, 20 months, and author of the blog Don’t Mind the Mess:
Right now my family’s autism story has just begun. Our only child, Graham, is only 20 months old. He was diagnosed less than 6 weeks ago, on Valentine’s Day. I don’t know what our ending is yet; I don’t even know the next chapter.
As for this moment, on this page, we have a lot of benefits other families living with autism don’t have. One of the biggest is that we blend in. Because my son is so young, his strange behaviors look like many normal toddlers’ strange behaviors. When people find out he isn’t talking yet, they can tell you about 10 other kids who were late talkers. If I do tell people he’s autistic, I’m not sure they quite believe me.
It’s okay. I get it. No one else believed me, either, when I first came to the sudden realization that my son was autistic a few months ago. I only found out because of our pediatrician, who asked thorough questions about his milestones and got even more thorough when she saw he wasn’t meeting them. It was the first time we’d ever seen her, but we owe her so much.
Our autism diagnosis so far has been more of a blessing than a curse. I no longer have to feel like the only parent who feels like I’m doing a terrible job, like I’m bad for wanting a break from my child, like I’m just not able to handle any of it. There is now a thing with a name, and I don’t have to put the entire burden on my own shoulders. (more…)
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