Category Archives: autism

The eloquence with which this story is written exemplifies the profound and unconditional love that an aunt holds for her niece.

Thank You Aunt Renée for your sharing words, and for giving your heart.


photo of a girl with autism who has a smile as big as her heartI saw
her blank stare when I spoke to her when she was just a toddler. I was afraid to voice my thoughts. I was in tune with the fact that my sweet, beautiful, perfectly dressed little niece, with a delicate name to fit… Sara…might be autistic.

Her modeling shoots landing a Macy’s ad, her amazing intelligence, her outgoing personality, would dismiss to any onlooker that she could even possibly be autistic.

Sara’s personality is unlike the experiences I had with autistic children. I have two cousins who are autistic, and my perception of autism is probably what most people are familiar with. Glenn is a grown man who is practically non-verbal. He runs up and down the stairs in a repetitive motion. He so perfectly mimics animal sounds, and clearly recites echolalic repititions from recent conversations in the room. Then there is Brian, an overly verbal aggressive grown man. He has savant qualities. He remembers names and birthdays from 10 years prior just by a persons face. His preoccupation with cartoons and facts about history were forced on whoever was within earshot. He would speak excessively and not have consideration for others or their response. Neither of them smiled. It is obvious to the average person that Brian and Glenn are autistic. There is no need to explain to strangers when they are in public being themselves.

Explain, explain, and explain.

The road Mary and Bob travel, because it is not obvious that Sara is autistic.

Sara smiles. Sara enjoys. Sara interacts. Sara is smart. Sara plays. Sara is funny.

So when Sara is having a meltdown in public, it is rough to handle without strangers commenting, or rolling eyes, at the parents who look as if they have no control.

But because she still shares those same core autistic symptoms, she is not typical.

My 7 year old twin boys, Johnny and Ricky, are Sara’s cousins. Just recently Ricky asked me, “What is wrong with Sara? What does she have? Why is she so bad sometimes?” The first thing that popped into my mind was ‘Sara is Autistic’, but this was a little more complicated than they could understand. I responded with, “Sara has a different way of thinking than most other children. She is not bad; her brain just does not let her understand certain things as easy as yours. Some kids have trouble with math or reading, Sara has trouble understanding why she can’t have something.” They just kind of nodded in agreement. Somehow that ended their questions. They have stopped coming home and telling me how Sara acted at a family gathering. Somehow they are already getting it.

When she plays with Johnny and Ricky, Sara’s non awareness of their feelings or enjoyment confuses the boys. I know that it will take many years for them to completely understanding her autism. I like the fact that they are growing with Sara, and her personality and actions will become what Sara is, and not what autism is. They will love her and be there for her no matter what.

I must mention Sara’s little sister, Erin. Sweet as pie, and always there to jump in when Sara is having a meltdown. Her compassion kicks in at the young age of 6, and she runs to get Sara’s weighted blanket or favorite stuffed animal to help her calm down. Erin has a lot to endure as Sara’s sibling. She will always have to compromise with Sara in a way that may not always benefit her for the sake of avoiding conflict. I am sure Erin’s compassion and empathy will only continue to grow as she gets older, and that hopefully she will look back in her childhood and see what positive effects her family dynamics instilled in her.

I watched as Mary and Bob endured meetings about Sara’s behavior in school. They glided without choice down a road that took a turn they never expected for their baby. I see the hurt in my best friend’s eyes. I understand from my own personal experiences how hard it can be to visualize the future of your newborn when she is lying in your arms, just to have it twisted and turned by a diagnosis. Autism is a word that changes an entire future, a future that now holds the unknown.

Even as I write this, after 8 bumpy years, family members most likely still grasp on to inner denial that Sara and her family will be affected with autism for an entire lifetime. Autism is hard to wrap one’s mind around, but if one can wrap their heart around it, the future can be full of love.

There are countless pictures of Sara smiling. I love that she smiles, because although it may not be happiness for anyone around her, I am thrilled that she can feel it for herself.

Autism speaks… we may listen, but we do not always understand.

We love you Sara!

Aunt Renée

~story & photo submitted by aunt renée

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Last week, I received this video along with the second entry into my 2010 Autsm Campaign.  Please watch, it’s simply beautiful.

Thank You to Andrew’s mom for sharing his smile with us.

young boy smiling-portraits of autismAndrew is our second child. He was conceived soon after the birth of our 1st child, Brian. I always say that he was a result of the emotions we were feeling the days following September 11, 2001. We were a young family then with a 4 month old baby and we clung to one another following that life changing event. Andrew was born the following June. We bought our first house and moved out of the one bedroom apartment we were renting while I was pregnant with him. He was such a good baby. But I also remember sensing something unique in him on the day of his birth. I noted this to my husband. I saw something in his eyes and told my husband that the way he looked at me was as if he held the wisdom of a old man who had lived a lifetime, and not the newborn baby that he was. He barely cried. He was perfectly content hanging out in his basinet, which was much different than his brother who would cry until I picked him up. I am a special education teacher and was teaching in a preschool handicapped classroom while pregnant with Andrew. Many of the children that I had taught were on the Autism Spectrum, so Autism was not something I was unfamiliar with. In fact it was something I was very hyper aware of and would almost look for signs of Autism in my children out of worry. So when I would enter Andrew’s bedroom, at 3 months of age, and he would be happily kicking and cooing, totally engrossed in his mobile, I would call his name and hold my breath that he would turn his little head away from the mobile and peek through the crib bars at me. But he wouldn’t. I would tell myself that I was just being way too hyperaware. He was much too young for me to be concerned about Autism. And I would quickly put those thoughts out of my mind. Until next time when he wouldn’t turn again. I was constantly analyzing him. He would look at me and laugh like all babies did, but why did it feel like I had to work harder for his attention than I remember having to do for his older brother. Every concern I ever had was quickly put to rest by some well meaning comment from others such as, “you can’t compare”, “all children are different”.

Months went by and more red flags were there. Lack of eye contact. Not responding to his name. Few words. Loss of words he did say. I knew I had to take this to someone other than family members who would dismiss my concerns as just me being a worrying mother. So, I made his well care appointment that was meant to be his 15 month visit a month early and brought him into the office at 14 months. I started to list all of the red flags I was seeing to the doctor. We moved on to a hearing evaluation to rule that out. I called Early Intervention for an evaluation. He qualified for services. We made the appointment with the neurologist. The earliest they would see him was six months. Finally after all was said and done, my concerns were justified with the official diagnosis of an Autism Spectrum Disorder three days shy of Andrew’s 2nd birthday.

Now, at age 7 (going on 8), Andrew is still the same baby I held in my arms in June 2002. He has made great progress, but still his language is limited. He brings so much joy to us every day and makes us so proud to be his parents. We have had another child since then too. A daughter, Kaitlyn, now 2 (going on 3). Another June baby. She is doing wonderful and is Andrew’s best playmate.

Life with our three is full, complete and I wouldn’t change a thing. Autism is not always easy. But it is what it is. We work hard every day to help Andrew reach his full potential. We love and accept him for who he is completely.

~story, photo, & video submitted by Andew’s mom

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Early last week I received this entry into my 2010 Autsm Campaign, my first official entry.  I just want to give a special thanks to Nicky’s mom for sharing their story.

Her last paragraph is especially true and poignant.  It reminds me just how I feel about my little brother Paul.


photo of young boy with autism from entry 1

My son Nicky has always been a very special little boy. Ever since he was a baby, people have responded to his big, blue eyes and sweet disposition. I always took pride in his laid back demeanor. Other children would take toys from him and he’d hand them over without fuss. I thought he’d inherited his father’s neat streak when he started lining up his little cars just so. His love of books and ability to memorize letters and stories at a very young age was just astounding. His speech came early and he was walking within the normal developmental parameters.

It wasn’t until after his third birthday, when I was pregnant with my daughter, that I started to think something wasn’t quite right. He was frequently jumping up and down, flapping his hands, galloping back and forth and making strange sounds. Friends and family thought nothing of it. “Little kids do strange things sometimes,” they said. But I’d heard those same sounds and seen those same behaviors in another beautiful little boy who lived across the street. A boy that had recently been diagnosed with an Autism Spectrum Disorder.

The hardest part of this whole journey was deciding if we needed to seek help. I felt guilty for thinking my son was different or possibly disabled. If most of my friends and family thought he was fine, why didn’t I think so too? But his speech development had plateaued and when Nicky’s preschool teachers voiced concern that he didn’t seem interested in playing with his peers, I decided to have him evaluated.

Nicky was diagnosed with Pervasive Developmental Disorder (PDD) a little over a year ago. Now he’s in a special education program in our school district and receiving the therapies he needs. He’ll be entering kindergarten next year and we’ve recently seen big improvements in his speech and social interactions. Those mini steps forward feel like parades-and-fireworks-worthy accomplishments.

On the harder days, I try to remember what a wonderful friend once told me. Nicky will always be that same sweet, smart, special kid I’ve known all along. A diagnosis doesn’t change that.

~story & photo submitted by Nicky’s mom

Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.

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_________________________________________________
Three Ways to Raise Autism Awareness
April is Autism Awareness month and sadly it is now reported by the Center for Disease Control that 1 out of every 110 children by age eight have an autism spectrum disorder, and for boys the rate is even more alarming at 1 in 70 having some form of the disorder. Autism is an epidemic that has the potential to affect each and everyone one of us, if it has not done so already.

Paul and Christine on the beach near the time of his diagnosis.

For those of you who don’t know, my younger brother Paul was diagnosed with autism when he was 2 years old. At the time of his diagnosis, in the early 70’s, we were told that he would need to be institutionalized. After many challenging years and unending persistance by both my family and many dedicated professionals, Paul has been able to emerge from his world and come into ours. Though he is now able to lead a comfortable life where he is an active part of his community, it is still a constant struggle for him to keep from withdrawing, and his search for acceptance in our world is a day-to-day journey. Fortunately, the awareness and treatment of autism has come a long way since Paul’s diagnosis. But we need to do more…

And so this month, I want to use my photography as a vehicle to raise both money and awareness for a cause that is near and dear to my heart. To do so, I am very excited to offer the following three ways to help the cause and add some incentive for you as well:

  • 1. I want to celebrate the unique beauty that exists within a child with autism. Too often their potential is overshadowed by their disability, but I want to turn that around and shine a light on their true uniqueness with my camera. To do this I am donating a free photo session and print package to a family who has been touched by autism. This free session will go to the winner of a special drawing on April 30th, 2010. Here are the details:

Shine a Light on Autism: Tell me either about your own family or a family that you know that has a child with autism. Tell me about their unique journey and the hurdles that they have confronted along the way. In order to raise as much awareness as possible, we ask that you be willing to share your story on my blog. I will post as many of your stories as I can during my weekly blog posts. Then, on April 30th at 12pm, one story will be randomly chosen as the winner and announced on both my blog and facebook page. The winner will receive a free 2 hour photo session with me, including 25-35 images posted to your own private gallery on my website and my Astoria Portrait Collection which includes a large wall print or storyboard, two 11x14s and 15 gift prints (total value of $1100). To enter the drawing please see my “Shine a Light on Autism Application Form.” All entries must be submitted by April 25th, 2010. I plan to run this promotion again in the future…so anyone who submits this time but doesn’t win, will automatically be entered the next time.

  • 2. For those of you who are thinking about booking a session with me but have not yet done so, here is your chance to do so and also contribute to the cause:

Book a photo session with me in the month of April, I will make a $50 donation to your choice of either Autism New Jersey or Eden II Programs of New York.  In addition, you will receive a $100 print credit to be used for your shoot anytime before Sept 30, 2010. You need not have a child with autism to take advantage of this promotion.  To book, just contact me.

  • 3. And one last chance to win…and to raise Autism Awareness…

Leave a comment telling me why you think Autism Awareness matters and you will be entered into a drawing to win various prizes promoting Autism Awareness, including:  tote bags, tee shirts, car magnets and pins. To enter just leave a comment on this post, on a Personal Story of Autism post,  or on a post on my Facebook Fan Page that pertains to autism and your email address will automatically be put into the drawing. The more dialogue the better, so each time you leave a comment you will be entered into the contest! Let’s hear from you!

And of course if you wish not to take part in any of these promotions that I am offering, you can still give to the cause by donating directly to an organization. New Jersey has one of the highest autism rates in the country so I suggest making a contribution to an organization that will have an impact right here:

Autism New Jersey

For those of you who live in New York, I highly recommend:

Eden II Programs of New York

And for those of you who live outside of our area, a great place to donate would be:

Autism Speaks

Autism Society of America

And one last thing, if you know of anyone who might be interested in raising awareness with me, please pass this post on to them….every voice helps.

Thanks,

Christine

Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.

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