children living with an Autism

A few nights ago, after managing a rather long and tempestuous battle, I lay in bed and thought to myself… Have the lambs stopped screaming yet, Clarice?

You see, with all of the noise, I thought I must have somehow stumbled into a horror flick.  Soon enough, I remembered it was only my daughter having a tantrum.  I’m quite convinced she has a great future in cinematography.  At least her flair for dramatics would indicate as much.

This time, the trigger was over her bedtime attire.  She thought it would be a good idea to wear a summer nightgown to bed.  Given the 20 degree temperature outside, I felt otherwise and stood firm by my conviction.  Thus began a brutal tug-of-war battle between a five-year-old girl, her frazzled mother and a pink princess nightgown.

An hour later, my daughter finally asleep, a pile of woulda-coulda-shouldas began infesting my brain… Maybe if I woulda just let her wear it, she coulda learned her lesson… let her see for herself how cold it gets. No, no, no she woulda not made this connection and coulda got sick. Then I woulda had to carry her, kicking and screaming, to the doctor. Maybe I shoulda just taken the gown out of the drawer before winter started. Why do I never think of these things beforehand? I can’t expect her to understand all of this yet, she has Autism!

She has Autism.

I will readily admit, I have a bad habit of throwing the A-card into any mix.  I can’t seem to help it, as it does often present a difficult set of challenges. However, A-card or not, every parent goes through these battles and the nasty woulda-coulda-shouldas that follow. It’s natural to think too deeply into things. These are our kids. We want the best for them.

It all begins with ‘the dream’ – the one we have before our children are born. It’s the dream of having the most accomplished child in the world; straight A’s, lots of friends and excelling at everything he or she attempts, while we, the parents, sit on the bleachers and jubilantly call… That’s my boy!  That’s my girl!

Through my first pregnancy, I had ‘the dream’, and throughout my son’s infancy, I held it firmly in both fists.

Parenting my son proved unexpectedly challenging. His behavior was different from the other children his age and his development lagged behind as well. Despite this, his pediatrician never seemed concerned, so I began questioning myself. After all, I’d followed the same recipe as my mother when she’d raised me. Was I a terrible cook, or a terrible mother?

Finally, we moved to another suburb of Atlanta, and after seeing a new pediatrician, my son was referred to several psychological experts who diagnosed him as having an Autism Spectrum Disorder. On one hand, I felt relieved because I finally had an answer. I wasn’t a terrible mother after all. On the other hand, I was absolutely terrified. At the time, my only point of reference was the movie, “Rainman”. I had not anticipated this. This was not part of ‘the dream’. That’s not my boy.

That’s not my girl.

Count your blessings. This is usually the first thing any observer will advise, and true, it is healthy to do during any difficult ordeal. What I’ve learned from these experiences is it’s also quite healthy to grieve the loss of ‘the dream’. After all, with any diagnosis, one often begins with Denial. It is only through the stages of grief we can finally reach Acceptance. How else is one expected to recognize the pieces, pick them up and move on?

Once moving again, you realize, yes, ‘the dream’ is indeed gone. However, you’ve now awakened to real life now – one that will surely unfold into something more beautiful than a dream. You just have to open your eyes and finally see it.

I am the mother of two children living with an Autism Spectrum Disorder; my son, age 8, and my daughter, age 5.  Our journey so far has taught me to never take a single word, smile, or moment of eye-contact for granted. This makes me just like every other parent – each of my children just like every other child. Our lives are really not so different. The only difference is often in how we are perceived.

I won’t lie to you, there are still days when I feel angry over our particular set of circumstances. Other days, I often wonder if they are putting the wrong people on the spectrum. Writing about it all allows me to gain the proper perspective.  Sharing it through this blog, I hope it does the same for others.

I am honored to have been given the opportunity to write this column.  Mind you, I don’t consider myself an Autism expert, rather a 40-whatever-year-old mother with some experience on the subject and a propensity towards sarcastic humor. Right now, I send these words from atop an embarrassingly large island of unfolded laundry. The only things missing are a lawn chair, a pina colada and… well, the ocean, unless you count the blue water in the nearby toilet.

Whether you have children in the spectrum or not, I hope you’ll be able to relate, gain something positive within my words, even if only a smile. Thank you for reading and I hope you’ll return again.