Our Remarkable Journey: 20 Years of Parenting a Child with Autism

Raising a Child with Autism

I have some big shoes to fill. 

A wonderful writer named was kind enough, amid his challenges, to .  That being said, I would like to pick up .  Two decades of networking, trying “snake oil” therapies, and tearing my hair out have taught me much about autism.

I have been waiting for years to tell this story.

I want to share with Patch readers information, anecdotes and the amusing antics of Luke. You will hear from me, as well as Luke’s sister Jamie, his friends, caregivers and teachers. We want to paint a picture of this “man child,” who is all at once amazing, frustrating, egocentric, curious and quite handsome! He has come a long way from being a silent, odd, impetuous toddler to the citizen he has become. 

As Luke has lived his entire life in Highland Park, many of you reading this may even know him. Employees at the Ravinia , , and the are all considered by him to be “buddies.” If you wear a nametag, you’re fair game.  If you’re not and he has met you a hundred times, he will still repeatedly ask your name. Just ask our neighbors. This is one of his quirks.

You no doubt have been bombarded by the media about the incidence of autism—it seems to change daily – now 1 in 66 or is it 1 in 88?  Someone with autism or another disability has probably touched your life, and you want to know more.

By North Suburban Special Education figures, there are 5,700 individuals with special needs in the 12 communities served by NSSED on the North Shore.  That figure only includes NSSED classrooms. There are many more special needs children, ages three to 22, who have been mainstreamed in the public schools or in private schools. I know first-hand that many families move here for the quality of our special education services and the many resources that are available. I will try to shed light on how to utilize those resources.

When Luke was about eight years old, we lived in Sunset Park in a vibrant and friendly neighborhood. By then, Luke’s differences were clear to most people and we had received his diagnosis of Autism Spectrum Disorder, definitively, after five years of evaluations. Before that, the doctors labeled his disability speech apraxia, pervasive developmental disorder, auditory processing delay, the list goes on.   

About that time, we decided to send a letter to all of our friends, neighbors and relatives about Luke. We asked them for their patience and understanding.  We asked them to watch out for him on the street, and we tried to give them a description of Luke’s odd autistic tendencies: yelling, walking in people’s homes unannounced, and especially his inability to play with other children. We even asked them to “have the chat” with their own children and encouraged them to befriend Luke.

More on that next week.

I welcome your comments and suggestions for future articles. Some topics I’ve planned include: 

“Cultivating Friendships that Last”
“Basketball, Baseball, Swimming—Oh My!”
“Luke’s Defining Moment (Bar Mitzvah)”
“Traveling with Luke: It’s a Trip, Not a Vacation”
Barney the Dinosaur

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Emily Fardoux April 21, 2012 at 02:55 PM
Major props to Robyn for implementing all these wonderful things at the library for patrons with special needs. The library couldn't have done it without her!
Yuji Fukunaga April 21, 2012 at 04:20 PM
Robyn, thank you for initiating these wonderful programs. Kai and I were just at the library this morning. Please introduce yourself to us if you ever see us there.
Lauren Feldman April 23, 2012 at 09:10 PM
Amy, You're amazing...just keep on doing what you're doing! I can't wait to hear more from you and other inspiring people in your family's life. Luke teaches me new things every single time I am with him (which is a lot)! I am so proud to be part of TEAM LUKE :) Love, Lauren
Toria April 24, 2012 at 05:31 PM
Amy, This is a wonderful blog! I look forward to reading about your joys and struggles. It will be a gift to anyone dealing with and/or trying to understand individuals with autism or other disabilities. Education is the key to understanding and hopefully changing behavior in the community for the better.. As you know, Luke is one of our favorite people. He is always a welcome addition in our home and brightens up our day! You and your family are inspiring! Love, Toria
Terri Olian April 26, 2012 at 06:28 PM
I will look forward to reading all of your writings, Amy. You -- like the rest of your family -- are an inspiration to all.


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