by Tracy Sekhon; Founder + CEO of ARTC
As a parent, I watched my child obsessively from the time he was born. I couldn't stop staring at him- from the perfect little fingers to the blue eyes gazing with wonder. It was easy to envelop my world in this little body. He was my "everything", and I was his.
This world of wonder grew as he developed new skills but I couldn't help comparing him to his older brother. His brother was just a bit older (16 months) so it became second nature to compare my younger son's development to my older son. From eating, to crawling, to talking, I compared it all.
When my youngest son was about 18 months there was a dramatic change from how he had been developing previously. These changes created greater concern with me as the gap between my sons became increasingly larger. I began addressing my concerns with his pediatrician who advised treating symptoms of hearing loss. The hearing loss was remedied with surgery and tubes. Even then, he wasn't progressing normally after his hearing was restored.
After being told that he was showing signs of Autism, I took him to our pediatrician, who completed the checklist and advised that his score indicated that he was no to low risk. I knew nothing about Autism until a speech therapist mentioned that she thought something more was going on than his hearing loss. It wasn't until I insisted he give me a referral to a specialist who could diagnose him, that I was directed to UCSD ACE for help.
According to Wendy L. Stone, PhD and Lauren Turner, PhD recent research results, "Compared with children with non-autistic developmental delays, children with autism have been described as less likely to demonstrate early social-communicative behaviors such as making eye contact, looking at others, greeting others, offering and giving objects, showing and pointing to objects, raising arms to be picked up, imitating, and using non-verbal vocalizations communicatively. They are also described as less likely to understand or respond to the communication of others, such as following the point of an adult to an object or responding to their names being called." (http://www.child-encyclopedia.com/autism/according-experts/impact-autism-child-development)
Finding commonalities gave me a sense of reassurance. The parts I had to let go were the general statements and standards of "normal", "typically developing", "neuro-typical". Such comparisons were not helpful to our journey. Here are a few tips, I found, to avoid getting trapped comparing my child with autism to "normal":
Little by little, I learned to love my son for all that he is, not just the parts that seemed "normal". I also ventured into new worlds that embraced what we needed most, which has been love and acceptance.
Asperger Syndrome is a term that was previously used to identify high functioning individuals with autism. It's no longer used as a subtype of autism, because all subtypes are now included in the autism spectrum disorder classification. Now, one with the characteristics of the previously termed Asperger Syndrome, is deemed on the lower end of the spectrum. These individuals have difficulty with social interactions, may have a limited interests and/or have repetitive behaviors. They could also have delayed motor development. They usually do not, however, have significant language delays or difficulties. Some even have amazing vocabularies and understanding of the meanings of words. As with all individuals on the autism spectrum, the strengths and challenges vary greatly from person to person.
A child with Asperger Syndrome is usually not diagnosed until they're having serious difficulties in school or with friends. Adults are often diagnosed when they show signs of significant struggle at work or with their personal relationships and/or are seeking help for depression or anxiety. Both seem to benefit from an understanding of their strengths and challenges, coupled with counseling and social programs that offer an opportunity to develop skills for effective social interactions.
Autism, or autism spectrum disorder, is a developmental disability that affects how a person communicates with and relates to other people. It also affects how they make sense of the word around them.
It is a broad range of conditions that include challenges with social skills, repetitive behaviors, speech and nonverbal communication.
Those with autism also have unique strengths and differences. It is a spectrum disorder, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.
The Centers for Disease Control and Prevention recently increased the prevalence to an estimated 1 in 59 children affected. Boys are more likely than girls to be affected.
The most obvious signs of autism that usually appear between 2 and 3 years old; limited or no eye contact, not sharing smiles or other non-verbal communication, no babble or use of words and not responding when their name is called.
The most obvious signs of autism at any age, are; repeats same words over and over, delayed language development or no language at all, gets upset by changes in routine, limited interests, limited diet, prefers to be alone and strong reaction to sensory stimuli (smells, sounds, textures, lights, tastes).
By Carrie Cariello
Mom. Can we take. My autism away.
Today, I did one thousand things wrong.
I broke a glass at exactly 6:01 this morning, and I forgot to switch the laundry.
I had a terrible workout.
I missed a meeting at the school and I barely made it home in time for the bus.
I ran into an old neighbor in the grocery store and I could barely contain my annoyance when she kept blathering on and on about all the trophies her son won for swimming this summer.
The afternoon wasn’t much better. I got frustrated with you when you kept asking if you could download a new song. Then I found you in the basement, stringing together all the Christmas lights even though it is barely the middle of September.
Daddy came home right before dinner and he kissed me at the stove and I complained he was late and his mouth turned sour.
At bedtime, I snapped at you because you wandered downstairs eleventy million times.
When at last the house was quiet, I sat at my desk and I wondered what this is all for—the snapping and the wandering and the autism?
What is it all for?
There is a reason.
Would I take your autism away?
This is what we autism parents ask ourselves the world over—we wonder if we would we turn back time or change genetics or hand out a magic pill to erase the spectrum disorder.
In the still of the night, we turn it around and around in our bleary minds.
When the sun rises, we are chipper again. We accept our responsibility—we don’t question the way it destroys our marriages and our self-esteem and our friendships.
At the same time there, is a lump in our throats and we swallow it. We force ourselves to forget about the idea that maybe, just a small maybe, we would change it.
See, we can’t say it out loud because it means we don’t love our special children enough and we don’t accept them for who they are and we are bad, bad people.
I love you.
I accept you.
This afternoon I went to the outlets to look for some running shoes. I saw a woman pushing a stroller, so I looked inside—I always look in strollers, because I love babies, especially when they aren’t mine—and in this stroller was a little girl with bright blonde hair. She was probably three years old. Her sneakers were pink.
Her face was arranged differently than ours. I am not going to go into details, but let’s just say she was hauntingly beautiful with a nose out of place in the way that leaves you aching deep in the middle of your rib cage.
Sometimes I hear people say there is nothing they would change about autism.
Nothing? I want to ask.
Not the brutal honesty, or the endless perseverations, or the crushing anxiety?
Not the inner turmoil I see witness inside your very soul–the perpetual longing to belong, balanced against your own pressing need for solitude?
Would I take it away?
Can I take it away?
Perhaps you and autism are inexplicably bound together. If I were to remove the obsessiveness, the memory, the stimming, the honesty, nothing would be left but a shell of a boy—empty, and hollow.
To change one thing would mean changing it all, I guess.
But aren’t we already working to change you—little by little—every single day?
Social stories, special schools, medication, education plans, books, feeding therapy.
When I sit at my desk after an especially long day and I consider the meaning of it all, I always come back to one thought.
We need you.
We need you, and we don’t even know it.
We need you to remind us that different is still equal.
We need you, and others like you, to alter the face of the traditional classroom, and the workforce, and politics, and sports.
We need you to help us grow into the people we are already supposed to be.
Sometimes I think of hope as a bag of rocks strapped to my back. It is heavy and I lug it around until I am sweating and shaking.
I hope no one hurts you.
I hope you will be okay when I die.
I hop you know how much I love you.
See, compared to love, the hope is easy.
If hope is a bag of rocks, then I think love is the wave of an ocean.
Again and again, the wave returns to kiss the shore, no matter how often it is turned away.
Why does it do this?
Autism brings out the worst in me—the shouting, frustrated, uncertain worst.
You also bring out the best.
Would I take your autism away?
Maybe I would, if not for me, but for you.
I can’t though, that’s the thing.
I can’t take it away.
I know, it’s not fair.
If hope is a bag of rocks and love is a wave upon the sand, then fair is a four-leaf clover. Other people talk about it, but you hardly ever see it for yourself.
Jack-a-boo. I have made a million mistakes in my life.
But you, my son, are not one of them.
Because of you, I am brave.
Because of you, I am different.
Because of you, I see those who may go unseen.
Today, I did one thing right.
Hey, pretty girl. I love your pink sneakers.
She had the widest smile, and her eyes were blue like the sea.