Christine DeSavino Photography

Wrapping Sara with Love… | Shine a Light on Autism ~ Entry #3

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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Christine, your photos are the best pictures any photographer has ever taken of our family! You have such a gift with the camera!

~Nicole O

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