This post was originally published as part of our autism awareness month writings in 2012 but I think it speaks to a visceral and personal explanation of why and how autism awareness is a part of our family.
I would love to hear your family stories in the comments!
30 Days of Autism – Autism Awareness Month, Cafe Style
Autism Awareness … 30 Days of Autism … these are meant to be what? Catchphrases to help us understand the world of autism a bit better? A way to help raise funding for autism research? A chance to pin blue ribbons or puzzled ribbons around and tell the world how much they need to be aware of Autism?
Or maybe, it’s about something a little more.
I think that’s it.
I think it’s about more than ribbons, or blue-colored lightbulbs (thought they do look cool).
I think it’s about more than any one organization, one blog, one writer, one mom, one person or entity. Because there is a bigger stake here than whether or not you know what autism is, whether you care, and whether you want to spread the word.
It’s called respect. Understanding. Empathy. It’s about realizing that no one picture, person, site or organization can ever encompass what autism means to all the individuals affected. To all the families affected. And I don’t think Autism Awareness is overrated, but it is more complex than most will understand.
The face of autism is a varied one. It’s not just about the kids you see in a sweet picture (though I’ll share a few great ones with you!) and it isn’t just about the adults who mesmerize us (Temple Grandin anyone?), and it isn’t just about the ones in between, struggling to come to terms with a diagnosis that defines their world, but not themselves, completely.
Today, my post will be a bit long, because I want to introduce you to three very different faces of autism in our house. I’ll leave my husband’s story for him to tell another day.
The Moody Gang … Our Family is one Touched by Autism
Three times over, we have gone through the diagnosis roller coaster with our children. In between Andy and Logan’s diagnoses, my husband was also diagnosed on the spectrum after a lifetime of never feeling like he fit in.
We have three startlingly different faces of Autism in our three children …
Bobby is more than 1 of the Numbers, the Faces, of Autism
In Bobby, we have the child who has struggled to understand his world with additional sensory issues. Legally blind, Bobby’s diagnosis of autism was delayed because ‘blindisms’ can mimic autistic tendencies. Bobby, you see, was born almost completely blind, his eyes appearing almost white at birth because of the Axenfeld-Rieger Syndrome he would later be diagnosed with (a rare disorder).
He was in therapy from an early age, though, because Bobby was not given an easy start to life. He fought tooth and nail for every achievement he ever made. Rolling over, sitting up, his first steps, his first smile, these things that come naturally to other children.
Right around 3 and 1/2 years old, Bobby (and ours) world was rocked as he started showing signs of seizures, including staring off, losing all tone and dropping suddenly … and he was diagnosed with epilepsy only after the specialist determined he was having hundreds of seizures a day.
He regressed, he learned, he grew, and he fought. And for all he has had to fight, he’s a child with a ready smile and a sense of humor and teasing attitude that will make you adore him. His is one of the many faces of a child with autism.
Andy can’t be Defined as a Number Either
In Andy, we have the preemie who defied the odds and won, but not without a cost. Andy was born at 33 weeks, the result of an emergency c-section and a life-and-death race to the OR. He wasn’t breathing when he was born. Weighing in at just 3’14”, Andy was our tiny fighter.
He gave us a glimpse of how hard he would work when he came home from the hospital in just two weeks. He, too, met all those standard acheivements later than what they told us was normal. When he was later diagnosed with PVL (peri-ventricular Leukomalacia – try saying that ten times fast), and a type of brain damage as a result, we feared the worst.
And yet he proved the horrific projections wrong again. He had mild issues, low tone, a lack of protective responses, he drug his head when he first crawled (really!) and he struggled to speak. It wasn’t until he was in school, much later, when we would learn he also inherited the rare syndrome, that he also had epilepsy, and finally, he also was autistic.
Where Bobby struggled for every acheivement in school, though, Andy excelled. Every new academic challenge was another hurdle to jump – and he’s jumped them all. He’s our honor roll student with an eye on college in the distance.
But he doesn’t make friends easily. And he would rather stay home, inside and on the computer, than go anywhere where he has to meet people out of his comfort zone. He still struggles with abstract concepts, and some advanced language skills. And he still struggles to rise above his dyslexia.
And yet, his bright face and enthusiasm for any challenge will endear him to you. You’ll fall in love with his very precise manners and some of the funny ways he puts his words together. He’s growing as tall as his dad and his feet are already the same size … and his heart matches it all. He’s a fighter, and a dreamer, he’s an artist, a writer, and has a heart of gold. And his is one of the faces of autism.
Logan can’t be Defined or Contained
Logan couldn’t wait to come into this world, but his pregnancy was one soap opera after another’s worth of drama. Also born at 33 weeks, Logan had stopped growing in utero at 28 weeks and came into the world as a 2’14” scrapper.
We knew early on that he would rock our world, as any child will. An early scan revealed he had damage, possibly from a fall on ice in my 25th week. Just one of many questions about our lives we will never really know the answers for. His milestones were never met on time, but he was a charmer from the beginning.
In Logan we have most of our life and death moments as a family, and most of them began with his first major seizure at about 10 months old, when he seized for 45 minutes and didn’t wake up for two days. Since then, we’ve dealt with AFOs and SMOs and cerebral palsy, as well as the same rare disorder his brothers share … and through it all he has always been the most amazing little guy.
He has a sweet smile and a giggle that will literally melt your heart, and he has a temper that you DON’T want to be on the wrong side of. He’s a charmer and a rascal all in one. And he has been through things that many adults wouldn’t wish to deal with, and he still rises above it.
Nonverbal because of severe apraxia, autistic by definition, Logan can’t be contained by any one diagnosis. He is neither trapped in his own world or ever fully in ours. And his is one of the faces of autism.
Parents, Individuals, and More
You will hear from Jim this month, in his own words. For now, I will say that opposites attracted with us, but our marriage has been filled with stresses that would scare most away. Like two pieces from the same puzzle we fit together. Through thick and thin, through fights and hurts and near death experiences … we fit together.
And yet, we are parents first, and we are defined by that. We wouldn’t know what to do with a child who breezed through every milestone. We scratch our heads at the child who rarely sees the doctor, and only then for a yearly checkup (though we aspire to that!).
In each of our children’s challenges, and triumphs, we are reminded that in this family, we all fit together. We’re all in this together. And part of the puzzle for our family, part of the fight, is in dealing with the many diagnoses that challenge us. Autism is just a piece of the puzzle that makes up our family. It fits. We wouldn’t be *US* without it.
Understand that autism awareness doesn’t mean you lose the trials or the triumphs, the understanding or the misconceptions, the straight up facts or the conjecture. Autism Awareness, and understanding, and empathy … it means that you realize that it fits. Sometimes with mismatched pieces and sometimes with the edges crammed together, but Autism fits into the puzzle that is every individual and family dealing with the diagnosis.
Autism is a part of our lives, it’s a part of the puzzle.
How has autism affected your life? Are you doing anything special for autism awareness month?