Last April, I ran a campaign called “Shine a Light on Autism” to help raise autism awareness in which I asked families experiencing autism to share their stories with us. During the campaign, many moms, dads, and family members wrote in and shared their unique experiences with us. Each heart felt story was more moving than the next. They touched me deeply. Thank you to all who participated, and if you haven’t read the stories you can do so here. Also a HUGE thank you to Autism New Jersey for their help in promoting and supporting me throughout this endeavor! The campaign ended when my brother Paul, who also has autism, reached his hand into a hat and randomly drew the name of the family who would win a portrait session with me. It was Andrew and his family…
After trying to coordinate busy schedules, we met with Andrew and his lovely family at Deep Cut Park in Monmouth County. The foliage was perfect and though it was a crisp day, the kids soon had their jackets off. Andrew was a handsome boy with a gentle demeanor and kind eyes. He was also quiet and seemed a bit unsure of why we were at the park. I led him to various places that I thought would make for picturesque backgrounds. His older brother, Brian, who stayed with us for most of the time, was encouraging and supportive. Seemingly wise beyond his years, Brian was also very interesting to talk to. He enjoys photography and wanted to know how I took pictures of moving subjects without them coming out blurry. He may have been referring to his little sister, Kaitlyn, blonde and beautiful with all the energy of a 3 year old. She would stop just long enough for a few shots and then run off to play. Andrew would also wander off after a couple of clicks. When I gently coaxed him back, he would agree and come with me to one of my strategic spots. One time he came towards me and didn’t stop. As he got closer and closer, I thought he was going to kiss me on the cheek, but he stopped just as his nose almost touched my face. He was smelling me; his brother said he liked to do that sometimes. Later when I told his mother, she said, “Oh, he must be very comfortable with you. That means he likes you.” I was so touched. Andrew said very little and so this gesture meant a lot to me.
For much of the session, Andrew held on to a doll – Jessie from Toy Story – much like a security blanket offering some kind of tactile reassurance. This made me think of my brother who very often has a small, soft football that he adeptly tosses up in the air from hand to hand without even looking. Every Christmas we get him another one to replace the worn out one that served him all year long. I tried to take Jessie from Andrew a couple of times and saw that he wasn’t comfortable with that, so we just decided to make the doll a part of documenting Andrew…as he is, with what he likes. Andrew is beautiful. His face has the innocence of a child, but with that innocence comes a special vulnerability. I know how difficult it is for someone with autism to understand and navigate through this complicated world in which we live.
After meeting his mom and dad, I can see that Andrew is very lucky to have such loving and devoted parents. They were nothing short of warm and comfortable to be with, and you could see how much they loved their children. My hope is that this session does “Shine a Light” on autism and is a small window into one of the many families that are affected by it.
If you haven’t read the story or seen the video that Andrew’s mom submitted, you definitely should. It’s beautiful. You can also hear what she has to say about the delicate balance of parenting three children, including a child with autism here on her blog.
| email post | tags: andrew's smile, autism, autism stories, autumn, b&w, boys, brothers, children, country, fall, family, nj child photographer, photoblog, portraits, shine a light 2010, sister&brother | posted in autism, autism stories, children, family, location, photoblog
Before I announce the winner, I’d just like to thank everyone who participated in our “Shine a Light on Autism” campaign. Your love and dedication are inspiring to me and many others. The stories were all very poignant and I feel like they really showed the broad spectrum that is autism. Thank you for helping us to raise awareness and thank you to all the people who left words of encouragement, strength and support – they really go a long way!!
It is really hard for me to choose only one winner, but here it goes…please watch the following video of me and my brother Paul to see who the winner is:
The winner is “Andrew’s Smile!”
We’d also like to announce those who won the “Autism Awareness” prizes for leaving their comments here on my blog and on facebook:
The winners will receive either an Autism Awareness car magnet, key chain, or tote bag. We will be contacting you soon… :)
This mother’s appreciation for ‘giving’ is not only evident in what she is teaching her son, but it’s also reflected in what she has taught her daughter.
Thanks for sharing your two beautiful gifts with us.
Hi, I am the lucky mother, of 2 beautiful kids. My daughter is 8 years old and my son is 5 years old. I am a stay at home mom with many titles. I’m very knowledgible about speech therapy, occupational therapy, physical therapy, hippo therapy, and biomedical treatments. Oh did I mention my son has autism. Years ago I woud have started off this story with the statement, “My son has autism” but in reality autism shouldn’t define my son or my family. My son is a gift that I’m working very hard to share with the rest of the world. I use the word gift because children with autism tend to be more comfortable in their own little world, and I am desperately trying to teach my son to give more of himself to others.
This is not always an easy task. For instance, I can’t always go to certain places with my son, or for that matter stay in certain places with my son. As an adult I’m not affected by it, but it is very hard to explain to my daughter that we can’t go somewhere, or we have to leave now because your brother is uncomfortable. Siblings sometimes take a back seat when it comes to autism. I know my daughter definately does. My husband and I try our best to make sure each child gets to do what they want to do, but many times that also means splitting up the family. I am very proud of my daughter and the fact that she understands her brother is different, but she is also a kid herself and I feel sometimes she has to deal with more than she should.
I’m going to end my story again with I’m the lucky mother of 2 beautiful kids. I hope you think so too!!!
~story & photo submitted by the children’s mother
Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.
Thank you for sharing Frankie’s giggle with us.
My autism awareness story, is one that is no different from the countless others that have been told, sadly by so many others… What makes it exceptional is the “hero” of our story… A beautiful, blue eyed, very funny little boy named Frankie, with an infectious giggle and an innocence that I would readily give my life for trying to protect. I met Kimberly, fell in love, eventually got married, bought a house, and then as the textbook dictates, started a family. I followed all the rules.
There are certain moments in my life that are a blur, and then there are those that I can relive like it was yesterday… The day we found out that she was pregnant and those feelings of love, excitement and anticipation of the next awesome chapter of our lives. Fast forward a few years, and our search for answers, “boys are always behind in speech”, “hearing tests”, “Apraxia”. Finally at around age 3, the moment we were told by a neurologist that he was certain Frankie’s behavior was consistent with “ASD- Autism Spectrum Disorder”, I recall the moment exactly… the clouds did not part, trumpets did not sound, I just thought to myself… no kidding Sherlock… I recall the day Frankie discovered wind while taking a walk, and his giggles as this unknown force pushed against him… I recall the first time he spoke, saying “no” and shaking his head purposely, you would think that he graduated Harvard.
Fast forward to Frankie at age 9… At this stage of the game I wish I could say that I have finished mourning the loss of a “normal” life and the ease that comes with it, but that is not the case. For me I suspect it will be a lifelong process. My wife and I have been through a lot and have a long long way to go… we know this and take it day by day. We are committed to our family and doing our best. We are always happy when we rack up a “Win” such as a good day at school, a smooth transition to a new activity or our favorite… a happy silly little boy that loves to be tickled. We do not take a good day for granted. We are lucky that there are good weeks and bad days.
As this story is about Autism Awareness… Just like I can still see like it was yesterday when he shook his head and said “no”, people like me remember every act of kindness, understanding and empathy… Please consider this when you see Frankie and I or someone similar out in the world…
~story & photo submitted by Frankie’s father
Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.
Thank you for sharing your story.
I had a beautiful, healthy baby girl on March 2nd, 2004. She was so precious and I took really good care of her. She was a happy child who made all of her milestones on time, and was interested in the world around her. On her 18 month check up, the pediatrician asked me a few routine questions, such as does she climb on chairs and does she have a 10 word vocabulary, to which my answer was no. At that point, the doctor looked at me bluntly and said, “Your child might have autism.” I was shocked. I felt the blood running out of my face. “That can’t be,” I said, “she is just a late bloomer”. The doctor suggested that I would wait for a while, and come see her again in about 3 months. When I got home that day, I called a good friend of mine, whose husband is a child psychiatrist, and he told me where I could get my child evaluated. We went through a long period of evaluations that ended up with a diagnosis of mild to moderate autism. Since the diagnosis, I’ve been working really hard with my child. Currently, she is in kindergarten in the autistic classroom, where she gets ABA (Applied Behavior Analysis.) I also do all kinds of alternative therapies with her, such as biomedical (DAN) and homeopathy. My child is improving and learning everyday. I BELIEVE THAT SHE WILL RECOVER.
~story submitted by the girl’s mother
Please be sure to leave a comment below…simply by doing so you’ll be spreading love, and helping to raise awareness.
Thank you to Jonathan’s mom for sharing their story.
My son, Jonathan is now 16 years old. Jonathan was diagnosed with autism at an early age (1 1/2). After the initial shock of the diagnosis, my husband and I jumped right into researching therapies for him. My husband (now ex) worked for the Department of Corrections in Hudson County. He put in for a shift change (working 4-midnight) so that I could continue working full time in New York City and he could take Jonathan to all the various therapies (early intervention, ABA and speech therapy) everyday. I had to continue working because insurance benefits did not cover any of the therapies since they weren’t deemed “restorative”. If he never had speech, there was nothing to restore!
Jonathan has never been that “autistic” child that is meek and mild. He has been a firecracker since Day 1 challenging all the therapists. When something is not going his way, he is aggressive. As he got older, the aggressions, self injurious behaviors and violence continued to escalate. Needless to say, due to all the pressures of having an autistic child, my marriage broke up. I think it was because we could not do anything together. I would stay home with Jonathan, or my husband would stay home. Vacation? What was that? Our vacations consisted of renovating our house to install all safety glass windows and wood wainscoting on the walls (due to Jonathan’s kicking holes in the walls). We had to get safety glass windows because Jonathan decided one day to kick one and received 80 stitches in his leg (as well as a traumatized mother). We did try one time to go to Cape May but after two days of Jonathan trying to open the hotel door a million + times (because it had no lock from the inside), we decided to cut the trip short.
I’ve been to every doctor imaginable, trying every kind of treatment (secretin infusions, diets, holistic treatments, medications, etc). We’ve even seen a doctor that traveled in from California monthly to treat autistic children. Nothing seems to diffuse Jonathan’s behaviors. Jonathan even started having seizures (4-5 times a day) for a four month period. Turns out that the “mood stabilizer” Depakote was causing the seizures. Strange since Depakote is an anti-seizure medication. Needless to say, my marriage broke up. There was just too much tension. Even my older son didn’t want to be there. Why should he? He couldn’t have any friends over because of Jonathan’s impulsive and aggressive behaviors. Also, Jonathan’s reputation in the neighborhood was legendary. One time when I thought Jonathan was happily taking a bath and I was down in the basement doing laundry, Jonathan heard the ice cream truck music. Well, he proceeded to get out of the bath and run outside to the truck – naked! Now you have to picture this… Jonathan was overweight (due to meds), bloated and full of bruises (due to self-injuries). Needless to say Jonathan’s presence cleared the line to the truck and the stunned ice cream man gave him whatever he wanted. I was mortified and couldn’t show my face in the neighborhood for some time. Can you imagine your neighbor coming to your front door to tell you your naked son is harassing the ice cream man?
I can go on and on about these types of incidents. I’ll save that for the book I should write. In 2005, Jonathan’s aggressions became overwhelming. Everything in my house that was of any value was pretty much destroyed. Bed frames, pictures, furniture. Medications weren’t having much effect on controlling the behavior. I reached out to my school district begging for help with him. I had researched an afterschool program (New Horizons in Autism) that I thought could help. If Jonathan was busy, he was not getting into (that much) trouble. Since Jonathan’s behaviors were so severe, New Horizons would need 2 staff to take him on. Due to the expense, my school district deemed it “not necessary”. I had to reach out to a lawyer to figure out the next steps. After over a year of going back and forth (and thousands of dollars in fees), I was starting to get defeated. I couldn’t control Jonathan anymore. When my oldest son had to sit on Jonathan so that he wouldn’t attack me, I finally lost it. I called the school district to suggest possible residential treatment. That was also ignored, even after sending my case worker video of Jonathan’s tantrums. It even came to the point where the Superintendent of Special Education would not even call me back. I had to call the Superintendent of Schools to get her to return my calls. Then, even that didn’t work. I even reached out to the mayor of my town, to no avail. Finally, I was told to try to go to the members of the Board of Education. I remember sending an email around 4PM. Around 20 minutes later, the phone started ringing and the emails started coming in. The Board of Education did not know anything about my situation! They assured me that they would take care of it and quickly. They asked me to attend the following Tuesday’s board meeting. At this meeting, I was like a celebrity. Finally everyone wanted to talk to me – the case worker, Superintendent of Special Education, the Superintendent of Schools and even the school’s attorney. They all assured me that they would solve this dilemma. However, one particular board member told me that if I could, please make a speech. Since the board meetings were televised on the local cable channel, it would ensure that there would be some visibility. After what my sister calls my “Golden Globe” speech, I left the meeting in tears. Again, I was assured that they would work it out. Well the next day (which happened to be my birthday), Jonathan was approved for residential treatment at Bancroft School in Cherry Hill, NJ.
After a few weeks of getting our ducks in a row (medical reports, immunizations, etc), Jonathan was going away. I packed up his toys, blankets and everything he liked to bring to his new room. During the whole time of “checking him in”, the tears would not stop. I had to leave my baby here and trust that it was the best thing that I could do for him. Jonathan, of course, did not know what was going on. All he knew what that his parents dropped him off and left. I went home and cried, cried, cried, slept, cried, cried, cried, slept for days. I would get updates from the school a few times a day. Seems Jonathan would not eat anything substantial. He was living on cheese and some popcorn. The case worker and I together discussed the situation. You see, I wasn’t even supposed to see Jonathan for at least 2 weeks. I knew Jonathan was confused; he didn’t know what was going on. We decided that I could pick up Jonathan that Friday and take him home until Sunday to see how it goes. Of course that Friday night was a major snowstorm so it took six hours to drive there and six hours back. But I was determined to get my boy. I guess I was like a mirage to Jonathan. He never sat so still in a car before for so long. That Sunday, we brought him back to a little drama, but it was definitely better. From then on, we took Jonathan home on the weekends and brought him back on Sunday (driving 400 miles for both trips back and forth). However, it became routine and changes started happening.
Jonathan came home after 9 months a totally different child. He was 70 lbs lighter, and best of all manageable. We were able to take Jonathan places – to the pizza parlor, to the store, without panicking. Jonathan also went into the afterschool program and for the first time in his life, went to an amusement park. It’s been 3 years since he’s been “out” of residential care and things are going well. Believe me, there are moments (again I’ll save these for my book), but for the most part things are quiet. He goes to school/after school from 8:15 am and gets home at 6:30 pm). I guess he’s just too tired to cause any trouble.
So after this long winded story, the reason I am writing it. I have one “professional” picture of myself, Jonathan and my oldest son Anthony. Unfortunately, Jonathan was 7 at the time. It was taken in the break room at our local ShopRite by a photographer. After that experience, in which Jonathan set off the emergency alarm since he opened the “Don’t open unless it’s an emergency” door, I rely on his school pictures every year. I always just hope for the best when the pictures are returned.
Thanks for taking the time to read the soap opera that is my life.
~story & photo submitted by Jonathan’s mom
Thank You Aunt Renée for your sharing words, and for giving your heart.
I 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!
~story & photo submitted by aunt renée
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.
Andrew 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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