Posts Tagged ‘ Voices of Autism ’

Voices of Autism: ‘We Learned to Take Nothing for Granted’

Friday, April 15th, 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 Deanna Segrave-Daly, mother of Mia, 3 1/2:

Our daughter, Mia, was diagnosed with autism spectrum disorder at 30 months. Although the news was not a complete surprise, it left us reeling. Our first suspicions arose when Mia was still nonverbal at 18 months. Her only means of communication was incessant crying, which was quite stressful for her and for us. Also, Mia had excessive separation anxiety, making it virtually impossible for one of her parents to leave the room without her. 

Mia currently is attending a typical preschool with a therapist as her shadow to help her navigate social situations, which remain difficult for her. Being around other children her age has been extremely beneficial. She continues to receive occupational, speech, and physical therapy–her core is weak, which makes simple tasks like sitting at a table or concentrating on speaking while standing challenging. She also receives ABA therapy (Applied Behavior Analisys), which helps expand language and teach her basic life skills that typically developing children learn on their own. Mia’s struggles continue to be sensory and socially related, with delays in expressive language.

Although Mia’s therapists play a key role in her progression and development, it has been support that we receive from family and friends that has been invaluable. We have learned to ask for help. We have also learned to take nothing for granted. While most infants/toddlers learn to say hello, interact socially, and play at an early age, it has taken Mia much hard work to accomplish such things. Having your child make sustained eye contact and kiss you is something that every parent and grandparent enjoys long before most children turn 1. Mia has just begun to share such feelings with us. (more…)

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Voices of Autism: ‘I Mourned for My Hopes and Dreams’

Thursday, April 14th, 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 Jennifer Bush, mother of Wesley, a.k.a. Moe, 4, and author of the blog Anybody Want A Peanut?:

My son’s development seemed perfectly normal. He was independent, curious, and happy. At 18 months, Moe had just started walking and wasn’t talking much. He had a few signs and words he would use regularly, like banana and baby, but was inconsistent with many others. Gradually, Moe stopped speaking entirely. He didn’t point or respond to his name. We took Moe to the pediatrician just before his second birthday.

Around the same time, Moe’s strengths started to feel like odd behaviors. Moe could occupy himself for long periods of time, reading books or playing with cars. I thought I was lucky. But as Moe got older, his differences became clearer. When other kids were chasing each other or playing side by side, Moe would do his own thing. He was oblivious to their games, and would wander around the house or play by himself.

Still, we thought maybe Moe just had an introverted personality. For such little guys, it is hard to know the line between temperament and problematic behavior. If it weren’t for Moe’s speech delay, we wouldn’t have been too concerned. Autism was in the back of our minds, but we didn’t really believe that would be the diagnosis. (more…)

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Voices of Autism: ‘The World Looks Cool Upside Down’

Wednesday, April 13th, 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 Karen Golightly, mother of Pip, 6:

I’m a single mother of three children, who are 14, 12, and 6. My youngest, Pip, was diagnosed with autism when he was 3.  Autism has changed my family, the way we see each other, and our relationship to the world.

Pip has taught us all so much that we would never have encountered: how the world looks cool upside down with one eye squinted; that sleeping in a hammock doesn’t have to be reserved for naps or vacations; how elbows can be entirely perfect; that things get overwhelming for everyone and there are ways you can calm it all down again; that Tom and Jerry have captured the very essence of funny; why a gesture can speak just as loudly as words; how the view from the top of a tree can change a bad day into a good one; and that distributing Ring Pops globally could probably create world peace.

Pip is charming as the day is long. He’ll walk into a room, intuitively find the saddest person in it, and immediately know how to make them smile and laugh. Through few words, he’s won over countless teachers, therapists, IEP administrators, doctors, flight attendants, tired parents standing in long lines at Disney World, and even people who don’t speak his language. It’s Pipspeak at times; it’s English other times; and sometimes it’s a sound, a song, or a call that he’s made up on his own. It’s his hand in my own, his smile at the mailman, his infectious laugh; or his eyes that light up at the sight of a fish.

He’s an amazing artist, drawing the world that exists in his mind in intricate detail and color. It’s like nothing I’ve ever seen from a 6-year-old before: houses perched on the edges of volcanoes and surfers riding tidal waves, airplanes, submarines and rockets swooshing through air, water, space. And the faces of people smiling all over the place.  He’s taken the “dis” out of disability and made it his own lovely personality. And when he wakes up each day and tells me he’s dreamed of climbing to the top of a very tall tree, I can only imagine his view from above and within. He’s Pip “the whip,” as they call him at school, and a boy who touches the hearts of many.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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Voices of Autism: Twins Who Share a Diagnosis

Tuesday, April 12th, 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 Ilene Krom, mother of Rachel and Simon, 4, and author of the blog My Family’s Experience With Autism.

krom2I have three wonderful children, including a set of twins.  My singleton son will be 6 in April, and the twins are 4.  The twins, a boy and a girl, are beautiful, smart, and have autism.

They share a diagnosis–classic autism–but that’s about all that they share when it comes to autism.  They present completely differently.  They are both quite verbal, but one is very echolailic (he repeats things exactly the way he’s heard it in the past).  It wasn’t until about a year ago that we really saw true comprehension in what he would say.  My daughter has a photographic memory.  She can recite the alphabet forwards and backwards without blinking an eye. 

They can both read “sight words.” They can count to 100 in ones and twos.  My son is learning to play the piano.  My daughter loves to dance.  My daughter can see a stack of items and know exactly how many there are.  Like I said, they are smart.  But they have their “quirks.”  We live by the daily routines.  The slightest alteration to these routines causes their universe to come crashing down.  Crowds cause them anxiety.  They need to know exactly what’s going to happen before trying anything new. 

Autism affects every aspect of my family’s life.  We have to think about it every time we leave the house and make sure we have everything we can possibly have to address the meltdowns that may occur.  And as Mom, I’ve become obsessed with finding ways to help them and ways to help ensure they can live normal and productive lives.  But, above all, they are children.  They are my children.  And I love them as much as my neurotypical son and more than life itself.

 

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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Voices of Autism: ‘I Have to Keep Positive and Hopeful’

Monday, April 11th, 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 Kerry Mihalik, mother of Ryan, 4:

It’s utter and sheer exhaustion at the end of each night. I am tired, sore, achy, stressed, miserable, and overwhelmed more often than is healthy. Yet bizarrely enough, some nights I just can’t fall asleep. Randomly, I will break into tears from the stress of it all. Sometimes, I feel inadequate to raise Ryan properly because I missed something–a new symptom or habit. Or then I’ll learn something new about how to help him and I wish I learned it earlier. Often a gloom cloud of desperation comes over you because so much of your life is out of your control. It just never ends; the problems, the issues, the concerns, the worries.

There are many days that I don’t get anything done because I myself am too tired or sick. I’ve got to clean, cook, shop, nap, write, run errands, job search. I’ve given up much of my social life in favor of sleep. I just don’t have time for friends. I care. I love them but I can’t listen to other people’s problems. Mine are too overwhelming. I feel bad if I share with my friends the reality of my life. Sometimes I alarm my friends with my daily stress level and I don’t want to do that. My friends love me and worry about me. Many times I make plans with friends and have to cancel at the last minute due to sheer exhaustion. I feel that many of my friendships will not endure. I can’t be the great friend that I used to be. Any free time I have is spent resting or spending time with my husband, in order to maintain my marriage, which takes effort. (more…)

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Voices of Autism: ‘Really Grateful She Is Mine’

Sunday, April 10th, 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 the mother of a 4-year-old who asked that their names not be used. She is the author of the blog Spectrummy Mummy’s Blog:

The most important thing you need to know about my kid with autism, is that she is just a kid. Like many 4-year-old girls living in the U.S., she loves Sesame Street, Disney Princesses, dressing up, and anything pink. More than anything in the world, I just want her to have the full experience of being a kid. She deserves that.

Like any ordinary girl, she wants friends, but she has some challenges that sometimes impact that. She is diagnosed with Asperger’s Syndrome, which means that her language and cognitive abilities are less impaired than other children on the autism spectrum. However, she still has huge gaps in her abilities. She finds it difficult to maintain the back-and-forth of a conversation. Taking turns and waiting her turn are also challenging for her. Of course, these are the very skills a child needs to make friends.

As with many others on the autism spectrum, she also has some differences in her sensory processing. All her senses are a little off, and this makes her behavior confusing to interpret. Often she will bounce up and down, spin around, or flap her hands to get extra input to her body. She has difficulty processing sounds, and sometimes noises are too loud, or speech is jumbled up and impossible for her to understand. Sometimes she is overwhelmed by all this input, and it causes her to lose control and have a meltdown. She isn’t throwing a tantrum, or being disobedient. She is a child who just can’t take any more.

I’ve been humbled by my daughter’s determination to learn things that don’t come naturally to her. Tiny milestones that would have been ignored are celebrated for the small miracles that they are. I don’t take anything for granted. She inspires me to make the world a better place for her to live in.

When she was first diagnosed, I felt too ordinary to raise such an extraordinary child. I began reading blog posts written by other parents about their amazing children, and I found solace in knowing that I wasn’t alone. Eventually I began a blog myself to tell the world about my daughter and about the joys and challenges of raising a child on the spectrum. Writing has not only helped me to advocate for her and those like her, but it has also introduced me to an incredible community of dedicated families just like ours.

She is just a kid, but an extraordinary kid. A kid like 1 in 110. She could be your daughter, your niece, your child’s friend or classmate. But I’m really grateful that she is mine.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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Voices of Autism: Hearing the ‘R’ Word

Saturday, April 9th, 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 Laura Shumaker, mother of Matthew, 24, and author of the blog www.laurashumaker.com.

matthewMy son Matthew, who has autism, is a huge Beatles fan and asked me if we could go to the music store to buy a “Revolver” CD. He was wearing plaid shorts, a different patterned plaid shirt, white socks and work boots.

“You might want to change your shirt,” I said. “Your plaid shorts would look even better with a plain shirt.”

“I look good,” he replied, “and we’re not going to talk about it anymore.”

When we entered the store, Matthew saw an entire rack dedicated to Beatles music, and ran over to it exuberantly, bumping into another customer-hard. He apologized profusely as the customer shook his head.

“What are you,” the customer yelled, “a retard or something?”

“I give up,” Matthew replied passively.

I guided Matthew to the cash register, careful not to make eye contact with the irate customer. Matthew has always been socially awkward, and while I’m well practiced at unfortunate public scenes like these, they still upset me. I was grateful that at least this time, Matthew seemed oblivious to the conflict. (more…)

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Voices of Autism: ‘He is a Fighter’

Friday, April 8th, 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 Spring Burke, mother of Austin, 8:

Imagine if your child had zero friends, if he was never invited to birthday parties, if he was constantly made fun of? Well, I don’t have to imagine it, I live it. Our son Austin is a bright, loving, and compassionate child. He has been through so much in his eight years of life. He is a fighter and has brought so much joy to our entire family.

When Austin was diagnosed, we knew that the state we were living in was not equipped to deal with his needs. So we moved our family from Louisiana to Indiana, leaving all of our immediate family behind. We lived in Indiana for three years, and Austin made great progress. But we were in serious debt, because insurance barely covered any of his treatments. It was hard, at times, deciding which therapies we could afford and which ones we couldn’t. Some could have potentially helped our son, but we couldn’t get them because they were too expensive. Do you have any idea how frustrating that is as a parent? (more…)

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