From the TACA Newsletter: The Witness
By Casper Zublin, Jr.
When I was a young man I witnessed an auto accident. It was sudden and loud and sent a chill down my spine. I called 911, assisted where I could and eventually was interviewed by the police about what I saw. It turned out that although I witnessed the crash, what I really saw and what my mind reconstructed, were in fact two different stories.
I saw a different kind of crash a few years ago. It happened over a period of several years. There was no loud sound, but a deafening, sickening silence. Rather than a chill down my spine, my heart was near breaking.
My best friend is Glen Ackerman. I knew Glen was my best friend in 1978. That was the year my brother died. Glen ran the two miles from his house to mine, and sat outside my window talking with me for most of the night.
Glen’s wife is Lisa Ackerman. The three of us started out as business partners. Then Glen and Lisa decided to fall in love, get married, and have a family. We worked together every day and hung out together most every weekend. They have a beautiful son, Jeff.
I remember the day he was born. I remember his parent’s joy and the light in their eyes. And sadly, I also remember when he lost his language. I remember when he started crying out for most of the day and night. I remember the search for a diagnosis and the dismissal that he was just fi ne. I remember the hearing test and finally the maybe something isn’t right. And I remember when eventually the neurologist uttered the word “autism” and “institution” in the same sentence.
In the depths of this slow motion accident, at its very worst, I witnessed Glen not give up. I saw Lisa hang on to the one-percent of her being and the idea that there could be a better day. In Lisa’s pain she reached out to other moms because it was the only way she knew how to deal with it. I saw Glen turn his college education to good use and start researching in the evenings --dissecting the medical journals for hints and clues. Then slowly, ever so slowly, they found once again that they were on the same team and things that seemed impossible a short time ago, held a glimmer of hope and possibility.
Sunday dinners at my house became a regular occurrence. From time to time I would turn to Lisa or Glen and comment on some improvement I had noticed with Jeff. I remember the first time he turned and looked me in the eyes when he responded to something I said. There was the Sunday when he made a joke. Another Sunday he told me I was Uncle Casper (and then followed that up by telling me I was “king jellyfish” from SpongeBob SquarePants!) I was a witness to these things. And though there was precious little I could do, I did what witnesses are supposed to do. I didn’t leave the scene of the accident. And with what little knowledge I had of the human condition, I sat outside their window and talked with them through the night.
This is my story. I am sure there will be more chapters to write in the coming years. If you are a witness, stay with your friend or your family member that is dealing with autism. Be present. Don’t leave the scene.
Be a force for good by helping them rebuild their community. Help them in the little ways of life. If this cause moves your heart, then get involved. Raise funds for TACA to help them serve the 14,000 U.S. families affected by autism at no charge. Make a difference financially.
Lastly, and most importantly, I would encourage you to love them through their pain, through the actions or inactions of their autism bound child, with the constant knowing that there will be a better day.
Casper Zublin, Jr. earned his BA with highest honors from Principia College in 1984; received an MBA from the University of Chicago, in 1993; studied at Stanford University's Advanced Management College in 2000; and is an active member of Young Presidents Organization. Mr. Zublin presently serves as Co-Founder and CEO of U.S. Risk Partners, Inc., a start-up venture. He also is a founding board member of TACA – Talk about Curing Autism – www.tacanow.org and volunteers his time in helping families affected by autism.
Posted by: lauri | April 16, 2009 at 07:38 PM
Dear Casper Zublin, Jr.
That's a great piece of writing and there is the possibility that I will short out my Mac writing this post.
For the last twenty years I have read nothing but first person private detective novels. (apart of course from the academic books I have to read for my writing) In your short piece you grasped immediately the important
aspects of a story, involving the reader and recounting short idiosyncratic facts about relationships that make your tale exceptional.
In 2007, I got the stories of parents of autistic children together and published them in England as Silenced Witnesses. I was amazed by the creativity unlocked within all the parents who wrote chapters for the book. Unfortunately my business accument has never matched my creative ideas and so the book lacks distribution. Even so, we began work on a second volume due to come out later this year. I included in this volume the story of grandparents, that gives a generational perspective on
vaccination and its results.
I would love to include your essay as a chapter, as an American you wouldn't be alone because Barbara Loe Fischer has written the Introductory chapter in this volume.
Martin J Walker
my email address is [email protected], for you and anyone who can help with
either of these volumes.
Posted by: Martin J. Walker | April 16, 2009 at 09:01 AM
Casper, You are an inspiration. It's good to know our fearless leaders (Lisa and Glen) from TACA have such strong shoulders to lean on when the going gets tough. Thank you for being a witness when most others run in the other directions as quickly as possible. We need more witnesses in this epidemic like you Casper. The more that witness, the better. I've said it before, when it comes to autism you have to be on the INSIDE looking "IN", not the outside looking IN. Thank you again.
Posted by: rileysmom | April 16, 2009 at 02:05 AM
I think we need a new category:
What a moving tribute. Here's to Casper and the Ackermans who are making the world a better place.
Posted by: sign lady | April 16, 2009 at 01:52 AM
A great story! Makes me wonder about times I've been so wrapped up in autism that I may have failed others as a true friend. I heard a quote when my daughter was diagnosed that says something about how during a true crisis those you may expect the most out of will abandon you while those you never expected will come to the rescue in ways you never dreamed. The ASD community are those I never expected who came to my rescue.
Posted by: Debi | April 16, 2009 at 12:49 AM
Thank you, Casper, for sharing your essay. And thank you for being such a compassionate, proactive and loyal friend. Your words are truly touching.
Posted by: nhokkanen | April 16, 2009 at 12:06 AM
Your a truly good person. When I start ranting and raving to my friends about autism, they just change the subject. It doesn't take long to find out who the good people are in this world.
Listening is the the foundation of love. You can't sustain true friendships without it.
Posted by: dugmaze | April 15, 2009 at 11:56 PM
What a wonderful story!
There are no words to describe how great it is that there are expert crash reconstructionists out there putting the pieces of the accident puzzle back together again!
To all the Mom and Dad warriors that brought me to hope through their expertise, perseverence, and drive to share the truth when the "professionals" left me in despair, thank you! I will forever be eternally grateful!
Posted by: sranzau in MN | April 15, 2009 at 11:51 PM
Thank you for your story and your actions. They have really touched me.
Posted by: Kristen | April 15, 2009 at 10:57 PM
How beautiful and sad. How fortunate Lisa and Glen are to have each other and you.
Posted by: Teresa Conrick | April 15, 2009 at 10:37 PM
What a wonderful article, and what an outstanding friend!
Posted by: Twyla | April 15, 2009 at 10:00 PM
I, as so many others, witnessed a horrible crash. My son's car was run off the road. The other driver never stopped. I got a partial license plate number. Sad how no one of authority ever asked what happened, not interested. You'd think professional people, people whose job it is to figure these things out would want to talk to us witnesses. To them it's car hit tree, occupant injured, don't know whether injury happened as result of crash or not, occupant can't speak.
If a 12 month old child was laying in the middle of the sidewalk screaming, a broken 2x4 laying beside his battered and bruised body wouldn't you think someone would ask, "any witnesses?"
In my dreams they do....
"Hi, I'm with the (CDC, the NIH, the AMA, the Save The Whales Foundation, Amnesty International, the Red Cross, NBC, CBS, ABC, Nogin) I hear you witnessed a crash, what happened?"
God bless ya Casper.
Posted by: bensmyson | April 15, 2009 at 09:57 PM
Still crying over here!! Very, very touching personal account! Thank you!!
Posted by: Lin | April 15, 2009 at 09:11 PM
You have a gift my friend, and that gift is the visual imagry, to the point of, feeling it myself, and that is truly magical. I too have experienced the car crash, the sonic boom, the nuclear bomb, that went off in our family, TWICE. I have four children, two don't have autism, two do. The two that don't have to look forward to our dying, to know in their minds, that they will suddenly be in the car crash, I am sure, is a frightening lott. I loved the fact, that they didn't vaccinate their kids, and the fact, that they have not experienced the crash...but that crash, can affect all others around the family, close family, friends like you, etc. Everytime I venture out my door, I have to think about how to strategize my day, my errand, and then run back into my home, to close up my world to my own view.
However, my friends, the friends of old, are not around anymore. I am getting older, parents are dying, and I am realizing my own mortality. I am realizing the fright of leaving this world, with children who have no idea of how to take care of themselves.
I love my kids intensely, however, I feel like I have lossed myself in the process. So not just my kids are suffering, so am I, to be honest. Do these people know what they have done? As in, the people causing or initiating this epidemic? Do they know the strain it placed in my marriage, how it essentially deadened us?
If I feel particularly sorry for myself, please forgive, it's been one of those loooong days.
Posted by: Kathy Blanco | April 15, 2009 at 09:03 PM
I briefly met the Ackerman's at the DAN conference in San Diego last October -- they were so friendly and seemed like a really together/cohesive team....it's hard to believe their marriage almost didn't make it. But...as so many of us know, Autism can knock the wind out of you and take over your life, if you let it. I am thrilled the Ackerman's made it through this battle together!! Thank you Casper for sharing this story, it reminds me that there is hope for my own marriage.
You seem like one in a million - there needs to be more friends/families like you in this world Casper!!
God Bless you....
God Bless the Ackerman's....
and God Bless TACA!!!!!!!!!!
We don't have a TACA chapter where I am from - but your organization/website has literally been my saving grace since our journey began almost 3 years ago.
**I will be sharing your story with everyone on my email distribution list asking them to support TACA financially!! Thank you for all you do...you guys ROCK!!
Posted by: Ayden's Mommy | April 15, 2009 at 08:52 PM
Wow Carl, your historical prospective and intense friendshp in your piece is increadibly moving. I cried during the whole thing.
I have been graced through this whole process of regression and the fight for treatment and recovery, with the most prescious gift of friends. Most have stayed by my side, let me vent, or just talk endlessly about new discoveries, triumphs and too many of the struggles. They have been my saviors and I don't think I would have made it through all of this without them.
Always remember what a gift you are, Lisa and Greg are truely blessed to have you and we are as well for you have allowed us to see that our pain and triumphs are carried by our friends as well. Thank you for sharing this beautiful reminder.
Posted by: Allison | April 15, 2009 at 11:30 AM
What a dedicated and loyal friend you are Carl. We have been lucky in that respect as well, with many friends who go out of their way to make our life a little easier. Family, on the other hand, has not always been so supportive. Since our son's diagnosis, most of my husband's family has dropped out of our lives. They complained that we never invited them over anymore, we were ignoring them. What they didn't get was that the people we spend the most time with are the people who ask if they can help, who take our son for us so we can have a few hours respite, who sometimes just come to my house expecting nothing more than a cup of tea and a tantrum. We have long gotten past the idea that family is just a blood relation. To us, family are those that love and support you through the worst times, not just the best. Our friends are our family.
Posted by: chrissie | April 15, 2009 at 10:37 AM
Beautiful! Every Autism Mom and Dad needs a friend like you.
Posted by: Diane | April 15, 2009 at 10:22 AM
what a wonderful friendship.
Posted by: Cathy | April 15, 2009 at 09:09 AM
This is a great account of the emotional roller-coaster no one talks about..as parents and or family members we carry so much..it becomes very apparent ,who walk among us..and who are sideshow folks climbing their proffessional ladders all under the pretence to use our kids in the climb..their are only a very few close family members and friends who could possibly even fathom what are days,weeks, and now years of this struggle is like..I am a single mom..my last boyfriend left 4 yrs ago after 7 yrs on/off relationship..because of the recovery of my son I told everyone I knew..that i was not available for most anything else..my priorty was my son who regressed..my son has done well, i have a few close friends who are my witness to this saga as i am to glimpses of their lives..most have kids on spectrum..most have dark circles under eyes..most are best people i know...cogratulations Glen and Lisa ..i know where go...you have a great friend.
Posted by: candace passino | April 15, 2009 at 08:44 AM
What a precious, precious man you are. I thought BA friends (Before Autism) staying involved after diagnosis were a myth. Thank you for setting me straight. I look forward to reading additional articles from you. It'll be like getting a letter from a unicorn.
And thank you for being there for Lisa. It is comforting to know there is support for one who supports so many.
Posted by: Kelly | April 15, 2009 at 08:40 AM
wow, i'm in tears. many of us will never tell this story, the story of a friend who stuck by us and had us to dinner every Sunday after diagnosis. what a wonderful tribute to Glen and Lisa. how lucky they are to have you.
Posted by: kim | April 15, 2009 at 07:24 AM