What Autism Does to a Mother
By Nancy Rones
Nicole Kalkowski knows that beyond the stress, fear, and family turmoil that
come with learning that your child has this devastating disorder, there is also
a devastating aloneness. In our second installment of Living With Autism, we
follow this mother of three as she struggles to save her son and finds help —
for her children and for herself — in unexpected places. In part one of
REDBOOK's series about raising a child with autism, Nicole Kalkowski and her
family were overcome with shock and confusion when their outgoing and vivacious
toddler, Ryan, began to lose his language and social skills; his sudden
problems with speech and disinterest in hugs from his sisters were just the
start of his perplexing symptoms.
After an agonizing search for answers, Nicole and her husband, Tim, discovered
that Ryan, now 3, has what many call regressive autism — he appeared to be
developing normally, but began to backslide at 17 months. In this installment,
we witness the painful toll Ryan's condition has taken on Nicole and follow her
and her Las Vegas family as they navigate the murky waters of treatment.
On a Sunday morning in September, about 30 parish-ioners squeeze into a
small room located just off the main sanctuary in Faith Lutheran Community
Church. Nicole Kalkowski and her family have been active members of the church
for the past five years. And today, the congregants have gathered to pray for
Nicole's son, Ryan.
Nicole sits on a small altar with daughters Ciera, 8, and Ella, 6, huddled
together on her lap. The 35-year-old mom wishes her husband, Tim, could be with
her, but the couple agreed that it would be best for him to stay home with
Ryan, who, in a packed church, would have been screaming and crying
inconsolably. Slowly, the church members begin to hold hands and form a circle
around Nicole and her girls. Most people have tears in their eyes.
No longer able to keep her composure, Nicole starts sobbing. As she wipes
away her tears, everyone bows heads and listens as Bible passages are read.
Then, a teacher at the church school presents Ciera and Ella with a book of
prayers created by their classmates.
As the vigil ends, the well-wishers hug Nicole and her daughters. Ciera's
eyes well up as she whispers to her mom, "Ryan is really special."
"My days were filled with silence"
Given all the anxiety and heartbreak they had endured in the past year since
Ryan's development regressed, the Kalkowskis — Nicole in particular — were in
sore need of this kind of support. Thanks to Ryan's erratic behavior and
demanding therapy schedule, which would devour large chunks of her time every
day, as well as her own deep sadness and reluctance to lean on others, Nicole
was leading an increasingly and painfully isolated existence.