When You’re Afraid to Say the Words Aloud

I like to think that after 14 years of living with autism, I’ve learned a few things. I read, and still read, everything I come across about the subject. When my oldest daughter was diagnosed in 2005, I spent a good year doing every possible intervention or “cure” there was.  Mind you this was the time before social media and Jenny McCarthy’s book was one of the few books offering recovery.

Defeat Autism Now (DAN) doctors provided the needed medical intervention including hyperbaric chambers, yeast detox, allergy testing, diet changes and B12 shots.  I became obsessed. I took my two year old to constant appointments, therapy, and bought tons of supplements. And sadly none of it made a difference in my child. She wouldn’t look at me and still hadn’t uttered a word.

For more than a year, I spent a fortune and my daughter was pretty much the same. I just wanted to help her from this terrifying disorder and I felt like a failure…even more than when she was diagnosed.

During this year my second daughter, Keira, was born. I nervously watched every movement she made the first year looking for the dreaded signs. I knew milestones by heart. I made Claudia’s in-home therapists assure me they didn’t see any signs of autism in Keira.

Claudia had been different from birth. I remember thinking she had to have trouble hearing as a baby even with the evidence that she could hear Dora two rooms away.  And I felt despite my husband and I constantly wanting to interact with her, she was much happier when she wasn’t being forced to play. She had no interest in other kids and fixated on Dora the Explorer then and even still today at age 14 ½.

So, when I was able to get my new baby Keira to play and come when I called her, I felt relief.  She would mimic words and always wanted to be near her sister Claudia.

I finally breathed relief at 12 months because she had met all of her milestones.

I rejoiced in her “normalcy”. As much as I hate to admit this, I knew Claudia would have a sister who will be with her (and capable of caring for her) after my husband and I were gone.

Then, Keira’s behaviors started.  The lining up and a familiar avoidance of eye contact. The cute words she would repeat were gone.  I tried to rationalize that she was just picking all of this up from Claudia and she was OK.

But deep down, I knew at 15 months. It was like my happy normal developing  baby had been kidnapped. It honestly felt surreal and beyond cruel.

I was still reeling from ‘failing at curing Claudia’ despite everything I had done. And now what was I supposed to do?

I barely had the courage to admit to people beyond my close circle that Claudia was autistic. Now I had to go through all of this again?

I couldn’t bear to even say the words out loud. I couldn’t bear to see my husbands face and watch him go through all of this again. It was so overwhelming. I didn’t really know many families with one special needs child, let alone two.

What did I do to deserve having two girls with a disorder I thought mostly affected boys?

Then, I finally broke down. I mean really broke down.

I had to feel everything I pushed down when Claudia was diagnosed.  I had to take the time to truly accept my new life and forgive myself for wanting it to be different.

I had to adjust my whole expectations of motherhood. It’s still a struggle at times. But the one thing that’s always been stronger than my grief was my love for my girls. It took me a bit but I got back up.

And I started therapy. Therapy helped me learn coping skills and to see things from a different perspective. Having someone I could talk to without judgement or editing my feelings was liberating.

Chances are the people you confide in during this time are the people closest to you in the world.  They are heartbroken for you and hate to see you in pain. As much as they want to help, they really can’t grieve for you. Having someone to vent to without any emotional connection to you or your children is cathartic.

You need to express all things you are afraid to say out loud. Fear and anxiety about the future live in those thoughts.

Ten years ago I had no idea what my life would look like. And today, I can honestly say it’s way better than I ever could have imagined.

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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