The Price of Strength

Raising two girls with autism has made me stronger than I ever imagined I could be.

I have found strength at my low points that looking back feels like someone else.

The rare times when I allow myself to think about why my husband and I “chosen” for this life, I’m not sure it was because we were particularly strong before autism.

We were young, invincible, and soul mates from the start.

We were together for 4 years before our fairy tale wedding and knew we wanted to start a family.

We loved our careers and the future was so bright. And our daughter, with the most beautiful red hair was born soon after.

Her sister completed our family 2 years later.

My mom loves to say that God choose us.  And how thankful she is my “angels” have such patient and loving parents.

While I appreciate the compliment, I struggle with this…

We have had no choice but to be strong and weather this ever changing tide of autism parenting.

And while I agree that in some ways we were meant for this job, I can’t ignore the profound effect it’s had on us.

My husband is amazing.  He’s got more patience than anyone I know.

He’s kind and loves our girls more than anything.

In contrast, I am not laid back and a longtime “worrier”.

I still am the parent that talks to the therapist and teachers.  I make the uncomfortable demands. And over the past 10 years this has served us fine.

I still try to see things 10 steps ahead, whereas he lives in the moment with them. And now as I look at my girls becoming women, I have new fears that I wouldn’t allow myself to  dwell on before because there was always another, imminent issue we had to work through.

We are entering a whole new dimension of this journey as they move towards adulthood. And it keeps me up at night.

I’ve accepted my fate in this life. But I still struggle with God choosing us.

Why would God give my perfect babies an incurable disorder that affects every aspect of their life? Because we were strong?

We have all watched the news and seen a story about an autistic kid suffering some kind of horrific abuse.

Those stories hit right to my heart because these kids faces always remind me of Claudia.

Usually kids with severe autism with the misfortune to be born to cruel, incapable parents.

While I would never condone any kind of abuse by a caregiver, there are times I feel a twinge of sympathy for them too. Were they uneducated, living in poverty with no resources, or don’t have the mental ability to care for a disabled child?

How did it get to a point where they felt it was logical to chain them to a toilet or make them sleep in a locked closet?

So, did God chose these parents too?

We aren’t the people we were before autism.  Not even close.

We spent many years in our home trying to figure out how to navigate our new world.

There was a period of years where Claudia would refuse to go anywhere and when we pushed, we were usually defeated quickly by the tantrums.

Then she reversed it on us, demanding to leave constantly. That was another cultural shock for us.

At times I feel as socially awkward as my kids.  I don’t know how to make small talk anymore. I assume everyone is judging us. I anticipate the “I don’t know how you do it” or just a look of pure pity.

I don’t blame them. I really do get it. After all these years I’m more comfortable in my new world than the actual world.

So yes, autism has profoundly changed us.

Years of putting ourselves last and rarely getting a break has aged us…physically and mentally.

We are super protective and can appear almost guarded. We are extremely isolated and have very few friends.

We’ve lost touch with lifelong friends. We have made sacrifices and have regrets we can’t take back.

We’ve paid a steep price for this “strength.”  And most days I am grateful.

We have the privilege of seeing 2 of the most amazing kids reach goals we didn’t think possible 10 years ago.

We truly appreciate things we didn’t before.

Maybe we were predestined for this life and I’ll look back and see it clearly. I really like to think so.

Written by, Michelle Kiger

My name is Michelle Kiger. I’m a 42 year old stay at home mom of 2 daughters with autism, Claudia (14) and Keira (12). We live in NJ. My Claudia has limited language and many of the stereotypical “behaviors”. My Keira has the verbal and social skills of about a NT 6 year old. I have the rare opportunity to see the whole spectrum of autism on a daily basis.

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