Posts Tagged ‘ Voices of Autism ’

Voices of Autism: The Challenges of a Military Family

Saturday, April 23rd, 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 Nashota L. Jackson, mother of Carter, 4, and author of the blog The Magical Wonder of You:

JacksonOur family is just like yours. We just have unique challenges. I am a former Army soldier that married my sweetheart, an active duty Marine. We have two beautiful children, a 4 1/2-year-old son named Carter and a 2 1/2-year-old daughter named Lauralai. On top of raising our family and supporting our country, my husband and I are both full time students.

Any free time we have is spent advocating for Carter’s care. Many people don’t know that military families face different challenges when it comes to dealing with autism. We move every three years. That means every three years we are readjusting to a new home, a new school, new doctors, new therapists, and many other new things.

You might have heard that autism rates are now 1 in 110. What you probably haven’t heard is that in the military it’s 1 in 88 and growing. There is support out there for everyone, but sometimes it can seem difficult to find when your support system changes frequently.

When Carter was diagnosed we made the difficult decision to leave our friends and family back East and ask for a duty assignment thousands of miles away in California. We researched where the best specialists were for Carter’s specific needs and then fought to get there.

Both of our children are the light of our life and we couldn’t imagine them being any different, but often times we struggle with making sure that they know that. Carter may be the one with the diagnosis, but it affects our whole family. As parents, we try to make sure they don’t know if we are stressed about insurance coverage, school meetings, and wondering what the future holds. Lauralai only knows her brother as Carter, not as a little boy with a disability, and that’s the way it should be. But we have to take extra steps to make sure she is around typical children her age so she learns the appropriate behaviors.

Autism is something that summons your inner fight. It cannot be left untreated; there is no time to rest on your laurels. Since the severity of the diagnosis is based on the gap between your child and typical peers, as everyone gets older the gap will widen if you are not fighting to close it. The typical mommy guilt we all feel is magnified when you have a special needs child. Instead of putting yourself last, you want to cross yourself off the list. Moms need to remember that their children, typical or otherwise, need a happy, healthy, mommy to fight their battles and enjoy their triumphs. Don’t be afraid to reach out and ask for help or vent your frustrations. You can do this, and you are not alone.

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: Milestones

Friday, April 22nd, 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 Pam Byrne, mother of Alex, 19, and author of the blog One Autism Moms Notes:

Last summer, as I was reorganizing some drawers and closets, I ran across my son Alex’s baby book. I hadn’t looked at it for years and had forgotten how carefully I had recorded the events of his first year, describing his first trips, Christmas, birthday, and other events in detail. During those first 12 months, Alex met his major developmental motor milestones within the normal range. According to my notes, Alex first turned over at two-and-a-half months, sat up alone at seven months, began to crawl at eight-and-a-half months, and took his first step around his first birthday.

What is more revealing, however, is to note the blanks I have left in his baby book: “Mother was first recognized at age___, ” Father was first recognized at age ___,” “That little hand first reached for ___ at age ___,” and “The very first word spoken was ___, and it was said at age ___.” Now I realize that these were all red flags pointing to autism, but I kept waiting, hoping to fill in the blanks.

I have heard from other mothers of children with autism that they, like me, could no longer write in their children’s baby books once they suspected something was wrong. After getting a diagnosis of autism, some put their baby books away, as I did, partly because we were too busy helping our children get better, but partly because we were overwhelmed by uncertainty as to what the future might hold for those babies. (more…)

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Voices of Autism: My Story

Thursday, April 21st, 2011

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. While all the stories thus far have been written by parents of children who have autism, today’s story is by Marc Rosen, a 22-year-old who has autism and writes about growing up with the disorder. He is the co-editor of Perspectives: Poetry Concerning Autism and Other Disabilities.

selfpicI’m not the parent of an autistic child, nor even a parent. I’m a single 22-year-old autistic gay man, and thus unlikely to ever father a child either. However, because I’ve been where your readers’ and contributors’ kids were, they may benefit from what I have to say. It is a tale of pain, but many endure far worse on a daily basis just by being in an institution or group home.

Unlike many of the kids you’ll hear about in this series, I wasn’t loved and supported from the get-go. The kindest words that parents in the community, including my own mother had for me when I was five were “freak,” “monster,” and “abomination,” though my school’s faculty tried to shield me from this. My first suicide attempt was at age 9, motivated by a belief that not only did I not have the right to exist, but that I had an obligation to “correct the mistake” that was made by my birth and continuing to live. These attempts continued for another five years, my life spared from a combination of clumsiness and my desire to not get caught by someone who might try to “save” me. Nobody even realized I had been suicidal or depressed until I was fourteen and had a nervous breakdown in the men’s room at school.

The subsequent intervention forced me to consider the future I previously never wanted. I was being over-medicated and over-controlled in every way, and was forced to teach myself various aspects of law, education theory, and psychology that led me to being mistaken for a teacher candidate in college, just so I could protect my education from sabotage. Even then, I had to deal with constant threats of talks of forcing me into an adult guardianship, and gleeful rants about shoving me into a group home from my mother despite the fact that I was well aware of the dangers of such facilities, where government oversight is non-existent and abuse runs rampant. By the time I was done with my first year of college, I had moved out of my mother’s house permanently, and moved in with my father to protect myself from her wrath. To this day, I haven’t forgiven her for what she’s done. (more…)

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Voices of Autism: Who is He?

Wednesday, April 20th, 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 Traci Range, mother of Emerson, 8, and author of the blog Our Silent Movie:

He is an 8-year-old little boy with a smile and a giggle that will brighten a room. He is an 8-year-old boy with the strength of a tornado when upset. He is skinny, very skinny, and small in stature. He wears glasses–when they’re not broken. He has beautifully long eyelashes that we as girls wish we had.  He has pasty skin with bluish tint under his eyes. 

Most kids his “type” have big heads. Nope, not him; his is thin and narrow.  His brown hair is disheveled most of the time. The bangs that are cut short to keep him from pulling his own hair make his forehead look even taller. He walks on his toes. He loves to jump. You may get a glimpse of his beautiful eyes, but not often.

You may think you heard a word, but probably not. He does not carry on a conversation. His “signs” are few and far between. He points. He lets out a shriek every once in a while.  He perseverates. He likes to count. He loves his ABCs and he’s addicted to Sesame Street.

He loves to be tickled. He loves to play in water. He takes drinks from the faucet or out of the milk jug. He struggles to write his name. He lacks safety awareness. He still needs to be helped to brush his teeth and to get dressed. He is frustrated and misunderstood. He is gawked upon out in public.

Who is he?

He is my son.

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: ‘The Real Holy Grail’

Tuesday, April 19th, 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 Lynn Hudoba, mother of Audrey, 7, and author of the blog Autism Army Mom.

Monday, October 24, 2005, was a beautiful fall day. I was stopped at an intersection not far from my house, when I had a sudden and certain realization. My daughter has autism. A light bulb went off as if I had just realized that I’d forgotten to take a pill, or send a birthday card, or turn off the oven.

The fallout from this was likely to be slightly more life-altering than having a bout of heartburn, snubbing a friend, or even burning my house to the ground, but somehow the initial jolt was a similar sensation.

Everything had been fine just seconds before, and now nothing would ever be the same. Audrey was in the back, flipping through books in her car seat as she always did. Nothing had changed about her in those few seconds but suddenly my perception of her was completely different. She was no longer just a late bloomer or an introvert. She had autism, a neurological disorder from which she might never recover. 

From that moment forward, I proceeded to pass through each stage of grief several times over, sometimes in the course of a single day: denial, pain, anger, bargaining, shock, guilt, depression, and finally acceptance. The Holy Grail of the stages was acceptance. But even that doesn’t sound all that great. OK, I’ve accepted it… now what? What about happiness? What about joy? What about laughter? That’s the real Holy Grail. (more…)

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Voices of Autism: Random Acts of Pickles

Monday, April 18th, 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 Patty Hooper, mother of Danny, and author of the blog Pancakes Gone Awry:

Last night, as I lay awake staring at the ceiling, I realized that it has been exactly a year since Danny was diagnosed with high-functioning autism. I am surprised at how quickly the time has passed,  since hearing the diagnosis made me feel like the world was ending.

I remember how it felt like being punched in the stomach when the doctor said Danny had autism.

Autism. The word I had been dreading.

My sister came with me for that diagnosis, and she held my hand and tried in vain to hold back her tears. She wasn’t surprised by the verdict–I don’t think anyone really was–but that didn’t make it any easier for either of us to swallow.

I felt strangely defensive and protective of Danny. All I wanted to do was put my arms around him (though he probably wouldn’t have let me) and shield him from the cold, hard, dismal place that the world had suddenly become. Though I am sure he had no idea what the doctor was talking about, I wanted to make things all better for him. I wanted to give him treats and shower him with love.

Instead, we took him to Subway for lunch, where Danny gleefully pronounced to my sister that he loved pickles. The worker making our sandwiches must have heard him, because as I was paying, she said to me with a smile on her face, “I added some extra pickles to your son’s sandwich, because I heard that he liked them.” (more…)

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Voices of Autism: ‘Extreme Sensory Issues’

Sunday, April 17th, 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 Lou Tecpanecatl, father of Diego, 5, and author of the blog Our Life With Diego:

DLTImagine that you and your family are planning a trip, either for a few days or for a week. You may even be flying to your destination. What do you do to prepare the kids for their upcoming adventure? How about when your son or daughter is sick and has to visit the doctor? How do they feel about going to the doctor and then how well do they handle taking antibiotics? Suppose your child seems upset about something that happened in school that day. How would you go about discussing expectations or comforting them in any of these situations?

Now, imagine that your child is 4 or 5 years old and does not possess many basic concepts of speech. His or her language is mostly one- or two-word requests or responses without any conversational skills. In addition to the speech delay, there are extreme sensory issues that cause intense fear of physical exams at any doctor’s office. The child refuses to willfully take any medication and has to be held and have it administered by two adults, fighting the whole time. The fear of high pitched sounds is so pronounced that your child will not even enter a public restroom because there may be a hand dryer in there that will go off at any second. How will you be able to tell them that this visit to the doctor is just a simple check-up? These tests are not painful. No one is going to turn on that machine or vacuum cleaner. Those people are not going to touch you or ask you any questions. How do you feel about being able to comfort him now? A little apprehensive, I would imagine, maybe even a little confused.  (more…)

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Voices of Autism: ‘Trapped in Your Own Head’

Saturday, April 16th, 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 Amber Ayers, mother of Xavier, 7, and author of the blog Autism Supermom.

AyersThis story begins with a boy named Xavier with a big diagnosis of moderate-to-severe autism. Our family story revolves around autism. Not a moment goes by that we are unaffected by the “Big A.” As parents, it is difficult to accept such a large label on our sweet curly-haired boy. It’s nearly impossible to remember time B.A.–Before Autism. There is no getting off this ride.

Since before age 3, X has gone to intensive therapies, giving every ounce to say the word “momma,” and learning to live in a world that does not understand him. Challenges? We have more than a few, but what I want the world to know is the blessings that come with it all.

My family is by no means “cookie cutter.” We strive daily to do our best while overcoming obstacles that few who have not lived it can imagine. I just desire understanding and acceptance. Don’t feel sorry for me because my child has autism, feel love in your heart for a boy so intelligent, with so much to say, but who can’t get the words out. Be amazed by the obstacles he overcomes daily. Allow him to impress you with his computer genius. With a smile that could light up any room. (more…)

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