Archive

Posts Tagged ‘verbal’

In Their Own Words – A Graduation Surprise

August 8, 2010 14 comments

This “In Their Own Words” essay is written by Tonya L. Jones of Detroit, Mich. She is the proud mother of  Joshua Jones, who has autism.

My son, Joshua, is six years old and has just really begun to communicate verbally within the last year or so. We went through such a long period of his repeating everything that I when he began to ask questions and tell me what he wanted for breakfast, I was astounded. Although Joshua was diagnosed only 3 1/2 years ago, this journey with autism already seems like an eternity. But, praise God, he is progressing extremely well and seems to surprise us almost daily with new accomplishments.

Joshua has been in an ASD preschool classroom for three years and during this last year, he began to spend more and more time in a regular ed kindergarten class at his school. He has the most amazing teachers and assistants who are more than patient with him, and I couldn’t be more thankful for all the time and effort they have invested in my son. As the school year came to a close, I was told that Joshua would be graduating with the kindergarten class and that there would be a ceremony and everything! I was just beside myself! My son would march in and graduate with his peers – WOW! I know it was kindergarten, but it was still an amazing accomplishment and his dad and I could not have been more proud.

On graduation day, my husband and I were sitting in the audience waiting for the ceremony to begin. I looked at the program and to my complete shock, there was my son’s name – Joshua was scheduled to lead the audience in “The Pledge of Allegiance!” I could not believe my eyes. I later found out that his teacher did not tell us because she wanted it to be a surprise. Well surprise was an understatement. I was completely stunned!

As the ceremony began, Joshua marched in with his classmates and when it was time for the pledge, he stood up in front of everyone, held the microphone and recited the pledge as we all repeated after him. Oh, what a miraculous moment! Just one short year ago, he could not speak a complete sentence and now he was leading dozens of people in reciting “The Pledge of Allegiance.” There are no words to describe the joy that still fills my heart every time I think about it.

I’m sure there will be many more proud moments we share with Joshua. I thank God continually for blessing us with such an amazing child. He is kind, loving and giving, and literally makes me smile every day.

I videotaped that portion of the ceremony and Joshua never gets tired to watching himself. That’s okay, though. I never get tired of watching him, either.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


Share

In Their Own Words – What Our Hearts Knew From the Beginning

July 3, 2010 16 comments

This “In Their Own Words” essay was written by Jessica Fournerat, who has a five-year-old son with PDD-NOS.

This is hard for me to admit, but as I meet more and more parents in similar shoes, I feel more comfortable opening up about my feelings about having a child on the spectrum.

All my life I have been a helper and have felt a calling to reach out to others, a calling that I never seemed to find the right way to fulfill. All the while I swore I would never have children.

Flash forward several years and I was pregnant in a new city with a new husband. I found myself in a quiet moment talking to my God.

“Ok, so God here’s the deal. I know I’m an older mom and that my baby may have challenges. That’s okay, I can love any child, but I am not sure I am up for the challenge of a child with autism. I don’t know how to relate to someone who is shut off from the world.”

You see, like many people who had no experience with autism, I was under one huge misconception. Those children with autism were emotionally cold and could not feel love for or from their parents.

Well, God answered my prayer and gave me the most amazing child I could have asked for. Jaxson was a smart, funny, stubborn, super active child with an amazing sense of empathy. Soon after learning to walk he blessed us with what we called “Run and Hugs.” He would run from the other side of the room, crash into us and hug us so tight.  Sometimes he would come up behind me and just squeeze as tight as possible and smile. He would cry when he saw sad children on TV shows far before children are supposed to develop empathy. As I learned more about autism, I learned that some of this was sensory seeking, as well as auditory processing issues. But I don’t care what label you put on it. This boy could LOVE.

Jaxson could not communicate verbally until he was three and a half. But he could get his point across. He once used a combination of sign language, gestures and PECS to communicate quite clearly that he wanted our cat Harley to eat a banana. There was no doubt that was what he wanted and when I held the banana up to Harley’s mouth he exploded in laughter and gave me the biggest hug. It was like he felt so wonderful that I understood him.

Not long after, we obtained an augmentative communication device for Jaxson and he took right to it. He was speaking on it the same day that we went to try it out.  This device opened the door for him and in the blink of an eye he was using his words verbally.  He started with Numbers and moved to the alphabet and soon it was words. What was great was that with the sentence structure of the Dynavox when he started talking it was sometimes in full sentences – “I want more juice, please.”

But the most amazing moment, I think, was walking in on him practicing the word “Mama.” He was saying it in a guttural tone and it seemed like it was important that he get it right first. Within days of that moment, he began to say “Mama” regularly and my heart just exploded.

All the experts we have dealt with have been amazed by Jaxson’s success.  They did not see what I saw from the very beginning – a young fireball with his hands reaching out to grab his future and direct it where he wanted to go. I always knew that even when he could not speak our words, he most certainly could understand them. I am so happy that the world can now start to see what our hearts knew from the beginning, that these children are so much more than any label and that they have countless gifts to give the world.

Jaxson has brightened my world. While the challenges do often arise, I find that it is his spirit, love and perseverance that keep us moving forward. I have found my way to reach out. I need only reach out within my own home to find my chance to help and be helped by a child so extraordinary.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Focusing on the “Cans”

June 27, 2010 6 comments

This “In Their Own Words” essay was submitted by Teresa Greenwood of Hays, Kansas, who has a daughter with autism.

This was my first celebration of World Autism Awareness Day. A year ago I didn’t know that April 2 was anything other than another day on the calendar.

Did I ever think about autism before my two-year-old daughter was diagnosed – no. Sure, I’d heard of it, and I sympathized with families that “had to deal” with a child with a disability. I did not know anyone with a child with autism, however. And I never would have thought it would affect my family, but it has.

Morgan’s diagnosis, and her progress since then, has changed my life for the better. I have more patience than ever before, and more understanding that we have to cherish every blessing we have. I am blessed to have Morgan in my life, and I would not change her in any way. Also, I am blessed with three other children who love their sister and embrace her diagnosis.

Of course, I grieve for the child she could have been without autism, but I also recognize the amazing child she is with it. When I drop her off at daycare and another two year old says “Hi, what’s your name?” I am reminded that Morgan only occasionally says “Momma” and mostly babbles without words. I know that she may never be fully verbal and will probably be in special education classes in school. The odds are she will never live independently. When she becomes excited or upset she will flap her arms uncontrollably. She easily becomes overwhelmed to where she has to drop to her knees and suck on her fingers. She is an extremely picky eater, like most people who have autism, and she has trouble sleeping at times. But I do not dwell on the “can’ts” and the “nevers.” I focus on the “cans.”

Morgan transformed from completely nonverbal with little eye contact to a bright child who babbles constantly. She will hold a pig and say “oink oink.” She will hold a cow and say “mooooo.” She also has a sheep, which says “baaaa.” She holds these animals to a toy hay bale to make them eat. She now waves bye-bye on occassion, and she has used some of the sign language she has learned. She will make a spider sign when she wants to sing “Itsy bitsy spider.” And she will pull her sisters’ hair if they get too close. She will run to her daddy when it is time to pray, and she will come crawl in bed with us in the middle of the night.

Morgan thrives in her therapy and learns quickly. And I can’t thank her therapists enough for taking the time to work with her, to help her become the person she was meant to be. Early intervention is key to successfully living with autism, and Morgan was fortunate enough to be able to experience that.

I watched a video of a speech by Temple Grandin, who has her doctorate’s degree and is a published author … and who also has autism. HBO recently made a movie about her, which I have yet to see. Watching the real Temple give a speech about her life with autism – and her successes since her diagnosis – gives me such hope that there is a place in this world for my daughter’s beautiful mind.

I sympathize with the people glaring at us in church because Morgan is holding her toy cow in the air and yelling “moooooo!” But I am not sorry, because to me there is not a more beautiful sound in the world than my autistic daughter finally finding her voice and saying words. Even if it’s barnyard talk.

On World Autism Awareness Day,  remember autism, and the millions of families affected by this spectrum disorder. Research is continuing so that hopefully, someday, more can be understood about this mystifying disabiliity. Until then, I will continue to grin at my daughter while she talks to her farm animals, being extremely proud of all she has accomplished at such a young age.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Silent Language of Love

On Monday afternoons, Ethan, our ten-year-old with autism, attends a gymnastics class with eight other children who have a range of different special needs. Today has been a hard day for Ethan—there’s a note from school referring vaguely to “an incident at the computers” and later, a refusal to do any math at all. I’m poised in the lobby by the window that offers a little view of the class, ready for the worst—a blow-up, a melt-down, something—and instead I watch Ethan blink with surprise at a new girl walking into class. Taller than him by at least five inches, she has striking red hair, glasses, and Down’s syndrome. Right away, I can see that, for whatever reason, she has captured his interest. He flutters closer and examines her from different angles, a technique he usually reserves for particularly interesting machines. As they move through their warm-up routine, he positions himself as close to her as possible. A few minutes later, they are partnered to run through some somersaults and cartwheels together.

If I were in the room with them, I’d be barking directions and prompting conversations because I’m his mother and can’t help myself: “Ask her what her name is!” “Tell her yours!” “Find out what school she goes to!” In my heart of hearts, I know he’d probably do as he was told and, I suspect, the interest would die because pushing him into the realm of ordinary conversation has never interested him.

Instead, as she cartwheels, Ethan squeals with laughter, bounces up and down, and then turns serious: “Nice cartwheel,” he says, staring at her feet.

For Ethan, language is a perpetual stumbling block. Asking a question is a dangerous invitation to getting a question asked back, to launching in on the exhausting business of talking back and forth. Recently, though, he’s learned that compliments serve nicely as predictable and brief conversation starters.

“Thank you,” the girl says, nodding and readjusting her glasses.

Usually an exchange like this would do the trick for Ethan and be enough bonding for one day. He’d go off and find a heating vent or a light switch to examine close-up. But today, he stays with the girl, and—I can hardly believe it—never takes his eyes off her.

For the rest of the class they say nothing, but stay in each other’s vicinity. There’s a thumbs up at some point and even, when they get to the trampoline, a smile from her. At the end of class, they are meant to shake hands with their teachers, which Ethan usually does, but today he skips past his teachers to poke his hand out in the direction of his new crush. For a horribly long moment, it hangs there, hovering in the air between them. I send up a silent prayer: let her shake his hand, let her do something. Though he’d probably make a speedy recovery, I fear my heart will break if she doesn’t.

Then she surprises everyone: she looks down at both her hands, chooses the wrong one and gives it to him. As the room empties around them, suddenly they are standing side by side, holding hands, looking—more than anything else—stuck.

Is this terribly awkward? Are they dying of embarrassment? The woman who must be her mother and I exchange glances. Should we sail in and fill this silent tableau with our chatter and the exchange of names? Because she holds back, I do too and eventually they manage to end the moment themselves. Ethan notices a light switch he hasn’t flicked today; she spots her shoes, two ruby-red slippers to match her hair.

After it’s all over, Ethan says only this: “I liked that girl.”

Why, I wonder. Why did my son, who is afraid of new people, who needs to be prompted to notice other kids, take such a shine to her? I can only think he must recognize something in her face about what they share—that he knows, instinctively, the world is hard for her, too.

I’m still thinking about this scene the next morning at the bus stop. In our struggle to help Ethan gain speech, we have tried virtually everything that books have offered us. He’s got some sign language, enough that any time we yell, his hand fly up to his chest and beat out I LOVE YOU over and over. We make him ask questions, two of us at every dinner, two of his brothers; we prompt him through stories, start his words for him. We have forced Ethan to talk every single day and though I’m sure this was right, I also wonder if we haven’t learned something ourselves from his reticence.

When you don’t talk much, there are many things you also don’t do: you don’t make up stories, you don’t lie, you don’t exaggerate the truth to make everyone laugh and/or feel sorry for you. You also don’t manipulate, or bore people without realizing it. I’ve spent years being jealous of parents with chatty children until I got one myself and realized: Ah yes, some children do go on and on, in a way that isn’t always dreamy.

At the bus stop, Ethan’s two younger brothers are infinitely smoother than he. One chats up another mother with a story of closet monster, the other chucks sticks on a roof with his friend from up the street. Ethan as always, stands alone, humming, with a nervous eye on the horizon for the bus. Though he never talks at the bus stop—there’s too much to do, watching for the bus—he’s recently started a new practice of hugging the other mother and me as the bus pulls up. Usually he whispers what we should say before we can: “Have a good day, Ethan.”

It’s inappropriate, no doubt, and something we should probably discourage before he gets to middle school, but for now, the other mom loves it and smiles afterward. And there’s also this; our blissfully typical six-year-old says goodbye by chucking me his stick form the bus steps and calling, “Hold onto that until I get home.”

We have learned that silence is a cloud with its own silver lining. What Ethan manages to communicate in his odd ways—in his gestures, in holding hands with that girl, in his morning hugs—can seem, at times, truer than a half-hour of his brother’s nightly laments about playground popularity. Is Ethan bonded to others? Does he communicate his feelings? Sometimes I think that in the absence of easy access to words, there’s a way he says the real things better than the rest of us.

This “In Their Own Words” essay is written by Cammie McGovern and was originally published on AutismSpeaks.org.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

5|25: Celebrating Five Years of Autism Science Day 20: Later Language Acquisition in Nonverbal Individuals with Autism

February 20, 2010 Leave a comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 20th item, Later Language Acquisition in Nonverbal Individuals with Autism, is from Autism Speaks’ Top 10 Autism Research Events of 2009.

A common belief of many parents and clinicians is that, if a child with ASD has not developed communicative speech by 5 years of age, the prognosis for future development of speech is extremely poor. In 2009 scientists challenged this belief by conducting a comprehensive review of the research literature to search for reports of individuals who were reported to have acquired speech at age 5 or older. Remarkably, one-hundred sixty-seven such cases were identified, changing the way in which we view language development in individuals with ASD.Early theories of brain development held that the period before age 5 represents a unique time in development during which language acquisition is possible, a critical period for language. Yet, recent longitudinal neuroimaging research has shown that the brain has a prolonged development, with major changes occurring during adolescence, and we now know that the capacity for neural generation extends even into adulthood. While the field of neuroscience has revised its notions of neuroplasticity and development accordingly, the field of ASD has held onto the notion of an early critical period for language acquisition. This paper published in the Journal of Cognitive and Behavioral Neurology, however, provides a very different perspective.

The authors identified in the published literature 167 individuals with ASD who used speech for the first time after age 5. Many of these children had been offered language intervention based on either traditional or naturalistic applied behavior analysis during the elementary school years, with the intensity of intervention ranging from 30 minutes/week to 30 hour/week. Others had been taught sign language or provided with Picture Exchange Communication System (PECS) training, computer-based training, or speech-language therapy. Children who developed phrase speech were found to have been in treatment longer than those who only achieved single word speech. In virtually all cases, significant time and effort put into treatment was necessary for speech to develop. According to their records, many of these children learned to “use phrases,” “answer simple questions,” “make spontaneous requests,” use “complete sentences,” and “speak in spontaneous, complex sentences.”

Although the age at which speech developed was variable (ranging from 6-12 years), once the child began speaking, subsequent improvement was often quite rapid. This suggests that achieving initial sound production and words can provide an important springboard for the development of subsequent speech. This important paper offers hope for the many children who have not yet developed speech by age 5, dispelling the belief that older individuals with ASD cannot respond well to speech interventions and providing a much more positive prognosis for individuals with ASD.

Did you know?: Autism Speaks’ High Risk High Impact Initiative chose “non-verbal” autism as one of its high priority research areas and has funded several grants in the area, including a novel treatment intervention to develop communication skills in non-verbal children over the age of five (to read more, please click here).  Autism Speaks also partnered with the National Institute of Child Health and Human Development to assemble a group of experts focusing on language, development, and autism to evaluate the efficacy of treatment interventions that target acquisition of spoken language.  This resulted in a consensus set of recommended measures published in the Journal of Speech-Language-Hearing Research.  These measures define benchmarks for determining a child’s language level and will be used to establish a framework for comparing outcomes across intervention studies.

Follow

Get every new post delivered to your Inbox.

Join 1,049 other followers

%d bloggers like this: