Posts Tagged ‘ autism awareness month ’

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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Preliminary Results from Survey on Autism and Wandering

Friday, April 22nd, 2011

Earlier this month, we urged parents to participate in a survey about autism sponsored by the Interactive Autism Network.  The survey aimed to study and understand wandering behavior among children and adults with autism.

In just three weeks, the Interactive Autism Network has received 856  survey participants, primarily parents with children who are autistic.  Preliminary data from the survey, focusing just on children, was released this week in the report, ”IAN Research Report: Elopement and Wandering.”  IAN discovered that about 50% of kids with autism attempted to wander off between the ages of 4 to 10 and about 30% continued to wander between ages 7 to 10.  Half of the parents had kids who wandered off long enough to cause significant worry and concern.  Plus, about 35% of the kids were  rarely able to communicate their name, address, or phone number.  

The survey also reported 58% of the parents ranked wandering as the most stressful behavior related to autism, and 64% were prevented from pursuing family activities because of the wandering.  Only 19% of the parents have  received guidance from a psychologist or mental health professional while only 14% have received guidance from a pediatrician or physician.

A high number of parents (67%) also reported they didn’t see any seasonal pattern with wandering, and the top 5 reasons (in order) they believed wandering happened was because their kids: enjoyed exploring, liked to visit a favorite place, wanted to escape demands and anxieties, wanted to pursue a special topic, and wanted to escape sensory discomforts.  Read the full report of the preliminary results at Interactive Autism Network.

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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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Book We Love: Point to Happy

Wednesday, April 20th, 2011

9780761157151Help your child on the autism spectrum express feelings and emotions with Point to Happy, by Miriam Smith and her daughter Afton Fraser. Point to Happy includes an attached pointer so your child can point to the emotions, objects, and actions in photographs as you read to them.

Smith created this book for her grandson Griffin (Afton’s son), who has autism.  While any child can read Point to Happy, Smith and Afton wrote it for  kids with autism. They included photos of emotions that kids with autism feel, like itchy, and loud sounds they don’t like, such as lawn mowers. There are even spots for you to include photos of your child’s friends and family members.

Check out this informative video from the authors to learn more about the book and its benefits:

httpv://www.youtube.com/watch?v=nE02kA0QfQM&feature=player_embedded#at=12

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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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