Reacting to Opinions About Our Real World – A Different Kind of Autism Awareness

The first moment I knew our real world wasn’t the one I was promised was moments after delivery, when a nurse whispered, just loud enough for me to hear, that there was something wrong with my baby’s eyes.

A month would go by before Bobby was diagnosed with the rare disorder we have become intimate with, Axenfeld-Rieger Syndrome. He was mostly blind throughout his first year of life, before intensive treatments–eye drops that he hated–made a difference.

Our little guy had eyes that were almost milky white, the blue eyes of a newborn barely visible beneath a spider webbing of white that had the doctors, and the specialists, perplexed.

Autism didn’t enter our world for another three years, and wasn’t whispered as a real diagnosis for another couple years after that. And yet, as one boy after another has been born, been diagnosed with one disorder after another, we’ve become intimate with autism.

Autism Awareness in the Real World is Intimate

What we’ve learned is that every diagnosis hits you differently, and hits every person differently. I never have reacted the same way that Jim has. We’ve dealt with a LOT of different diagnoses over the years.

Autism … was just another diagnosis. Three times over. And yet it wasn’t. By its very definition, autism has completely changed our lives. We have three boys on the spectrum, and our lives are spent in a constant rotation between one crisis and another, one meltdown and the next, and moments worth treasuring.

Huh?

Well, see, that’s the thing. If your life is only about the diagnoses that make it up, you’re missing the chance to experience every moment fully. The first time your child smiles at you blurs into endless days of therapy. Your child’s first step becomes a picture in a scrapbook. Your child’s first words become a wish for them to be quiet.

The fact is, when you have children with special needs, you’re given a rare opportunity to experience life in almost slow-motion. Moments that would normally blur with the passage of time, that you would occasionally remember with fondness, are seen as the miracles they are.

Sometimes.

Autism Awareness in the Real World is Actually … Real

See, sometimes, you have days when you rue the diagnosis, the disorder, life in general. Sometimes, life just feels like it’s one drawn out soap opera. And it is so easy to get caught up in the stress of constantly dealing with one crisis after another and forget the gift you’ve been given.

When Bobby’s on his hundredth question and your best efforts won’t redirect him … When Andy just does not understand the social nuances of middle school, or the challenge of asking the kid next door to play … When Logan can’t get his point across and instead hits and scratches, rages against his own little world, hurts himself … it’s easy to be overwhelmed.

When you spend so much time worrying about your kids than you do your spouse … it’s also easy to be overwhelmed, to take it out on the one person who is along for the ride, for better or worse (and let’s face, this can be a lot of the ‘worse’).

Autism isn’t a pretty, one size fits all diagnosis. It’s as ugly as epilepsy in the middle of a grand mal seizure. It’s real.

Our lives are real. We take the good with the bad, and sometimes we are burdened by it all, but … but! Sometimes we are amazed by the little things in life.

A smile.

A step.

A word.

Real life isn’t always pretty. Part of coming to grips with your child’s diagnosis is in being able to see the good along with the bad. If all you ever see is the negative, if all you ever understand is the pain and the heartache of yet another struggle … than the diagnosis will rule your life and your child’s life.

Autism is just a diagnosis.

A life-changing one, yes, but just a diagnosis all the same. Ask Jim … he was dealing with life-changing diagnoses long before we were a “we” or autism was a dreaded yet welcome diagnosis.

Life happens. It isn’t always pretty, and it isn’t always fun. Sometimes we rail against the unfairness, the injustice … but in the end it’s up to us how we live it.