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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”
“FAQs”
Barney the Dinosaur

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Judy April 18, 2012 at 12:19 PM
You are the best, but I've always known that. Luke could not be luckier! I love you, Judy
Amy Perlmutter April 18, 2012 at 02:50 PM
I look forward to reading your weekly articles. I know you write with wit, love and understanding. We all love seeing Luke and playing the "who are you and who is your child" (which always consists of both first and last names) with him.
Kate April 18, 2012 at 04:48 PM
One of my best friends has a son that has Autism. My understanding from her experiences is that many parents of her son's classmates are not understanding or supportive when a fight or an odd incident happens that involves her child. I want to believe that the reason for this behavior from parents of children that don't have special needs is because they don't understand the behaviors of a child that's autistic, and not because they're simply cold hearted and ignorant. I can't wait to tell my friend to look for/read your articles. Luke is blessed to have you as his mom, but also the community is blessed to have the knowledge, experiences, and support you give to others.
Yuji Fukunaga April 18, 2012 at 05:31 PM
Thanks for picking up where I left off, Amy. I look forward to reading about your experiences with Luke.
Susan Backer April 18, 2012 at 06:53 PM
Inspiring and uplifting article...looking forward to more...gives hope to others who face these challenges!
Amy Greenebaum April 18, 2012 at 06:56 PM
Thanks, Ame. And thanks for thinking of me.
Amy Greenebaum April 18, 2012 at 06:57 PM
Thank you for your comments. Please feel free to contact me anytime to talk about specific issues or concerns.
Donna Roses April 18, 2012 at 06:58 PM
Luke is an amazing kid with a strong, supportive family. I look forward to reading your blog and to seeing you soon.
Amy Greenebaum April 18, 2012 at 06:59 PM
Your columns were always informative, funny and interesting, You will be greatly missed. I hope to provide a different perspective from a parent who's been there, done that, etc. Best of luck to you and your family, Amy
Jan April 18, 2012 at 10:29 PM
I've always said Luke is lucky to have you as a Mom. Now others will see and learn all the opportunities there are for children with Autism. You have put your heart and soul into raising Luke and it shows!!! XOXO
LORRA April 19, 2012 at 12:13 PM
Amy, I am too full of things to say here to say anything right now. Thank you for taking this on. I have imagined the world thru your eyes for years now, and enjoy each time I interact with your inspiring son.
Pepi M. Silverman April 19, 2012 at 09:30 PM
As a special educator for over 20 years, I have had the privilege of working with many wonderful children. I think they have taught me as much as I have taught them. This young man was a student of mine a long time ago and his incredible blue eyes will be in my mind forever. He personified someone who was eager to learn, who had an intuitive ability to connect even when his behavior might have sent a different message and most importantly, his abilities overshadowed whatever challenge he was experiencing. He was a tenacious student who tried so hard at everything he did. I count myself as incredibly fortunate to have been his teacher when he was a little boy and will treasure that experience always. As educators, we work with children for a short amount of time and then they move on; special education teachers sometimes get to work with students for more than a year, but even with that it is just a moment in time. Seeing Luke recently, attending his Bar Mitzvah, and then coming upon your blog is an incredible opportunity to see how things have progressed since he left my classroom. Thank you for your generosity of spirit to share your experiences with your community so that other families can learn from you. Warmest Regards, Pepi M. Silverman
Ann Brown April 19, 2012 at 10:19 PM
Dear Amy, I too have been parenting my son with autism for 20 years! Thank you so much for your courageous work in bringing the world of autism to light. The courageous people and their families who live in this world each and every day deserve our love, knowledge and attention!! Kudos!!!
Bryce Robertson April 20, 2012 at 12:57 AM
I feel like I have to second all the comments on here... my favorite Luke anecdote is by far last year when I was at the NSSRF banquet where he was to receive a Teen Participant of the Year award. He was all dressed up, and when I walked in he ran up to me and gave me a hug, said "Hi Bryce Robertson!" and then spelled my entire name out so I would be able to give him an "oh yeah!" after he did it. He's definitely lucky to have such a supportive family and so many great friends, and we are all lucky to know him!
Shari coe April 20, 2012 at 09:14 PM
Amy, you are an amazing mom! I am so proud of you always! Luke and Jamie are both so lucky to have you as their biggest cheerleader! I always will remember that you taught me our children just need the chance and opportunity..once giving them that, they can soar! And look how Luke can now fly! You wrote this article so spot on, can't wait to read more from you! Love u always
Harriet Levy April 20, 2012 at 10:03 PM
For all of us at The Center for Enriched Living who know and love Luke - we know it's going to be a fun afternoon or evening when he participates in our programs. Coming from a family like yours, it is no surprise that he is the incredibly smart and talented person that we know. Keep on sharing those stories - I'm sure we can add to the mix, as well.
Robyn Robertson April 21, 2012 at 01:55 AM
Amy and Yuji, First and foremost, I just want to say to Amy, that my son, Bryce, has shared such wonderful stories about Luke and told me how fond he is of him. From what I have been told, Luke certainly sounds like he is well on his way to independence and to have a successful and meaningful life. Second of all, I know both of you, Yuji and Amy, have brought the library into the lives of your families, which is a fabulous resource for everyone, including families with members that have special needs. I work in the youth department at the Highland Park Public Library and am the coordinator and staff educator on all things special needs related. (I am a former special education teacher.) Just to let you know a few things we have been doing so the library can be an even more welcoming space for people with special needs. We have recently had a disability awareness training for the entire staff in March and will have another one in June so the staff is well educated on customer service for patrons with special needs; we have numerous links on our website regarding special needs; a display of special ed books throughout April; a child's sensory sorter filled with items for all senses; a library social story for in house use; and this year participated in Light It Up Blue (we shine blue outside) to help raise autism awareness. We hope that this small start will help families like yours find the library as a welcoming, second home. I look forward to reading more of your stories.
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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