Happy Father's Day from an Autism Dad Who Says: "I Am the Luckiest"
By Charles (Chuck) Hancock
I'm back. I knew I would be. Just did not know when; or why. Well, I think I now know.
My previous, and only, submission to Age of Autism was posted here almost five years ago, in August 2011.
At that time I briefly spoke of the progress that my son, Charlie, then nearing the age of six, was making on his autism spectrum disorder "journey." Yes, journey. Though not in my mind envisioning a cool adventure-like trip, junket, road trip, or expedition. No, this one more like a slog. Back in 2011 Charlie was working with ABA-BCBA (Applied Behavioral Analyst-Board Certified Behavioral Analyst) professionals on a regular basis, and was in receipt of biomedical treatment under the medical guidance of a DAN ("Defeat Autism Now") doctor. He also was just beginning to talk. In semi-sentences anyway. Charlie has had a ball the past three years surfing with the amazing group from Surfers Healing the past three years. He gets a medal each year, tells people he was the "champion surfer." Such a joy for all the families involved. The range of emotions is awe inspiring. Wait listed this year; fingers crossed.
I wrote in 2011 that Charlie, then about to enter kindergarten, had come a "long way." Specifically, at that time, both verbally and socially. I also wrote "No doubt about it, his autism will be cured." Well, the point of this submission is not to offer a proclamation of such an occurrance; though Charlie, who just days ago concluded the 4th grade, has certainly made some pretty significant progress since 2011.
Here, now, I just want to ramble on a bit about inspiration, and love. And also fear. About life I suppose.
A lot has happened since August 2011. I got divorced. I donated stem cells to my brother. I witnessed the passing of a dear friend, a fraternity brother. He had valiantly, and with uncompromising grace, fought amyotrophic lateral sclerosis (ALS), aka, Lou Gehrig's disease. Another fraternity brother, amazingly, is now battling this same dreadful disease. I was subjected to a level of stress, brought about by a circumstance not here to be discussed, which I would not wish on anyone.
What essentially motivated me to write this at this time is the fact that it is Father's Day. Charlie is my only child. My pride and joy. My hero. And my Mom's only grandson.
My Mom died on Father's Day, three years ago. She had been incredibly close to, and had the opportunity to enjoy four granddaughters for many years, as well as great grandchildren. But, Charlie was her only grandson. And, oh my, did she adore him. I will always believe that every hour spent with him added a month onto her lifetime. Near the very end of her life, she was under hospice care, and I spent the last week of her life with her. Twenty four hours a day. She could not communicate, but I talked to her, held her hand. We talked about all the goofy things I had done in my lifetime, up to that point. Trust me, these very long conversations. And, of course, about "her Charlie." The hospice staff told me for three days leading up to the day my mother died that, "today's the day." Well, it was not. In one of our last conversations, I basically, the day before Father's Day, asked her to "wait until tomorrow." I knew how much she loved Charlie, and me, and my relationship with Charlie. I also selfishly wanted to always remember my Mom on Father's Day. Well, while at here bedside, on Father's Day 2013, she peacefully and quietly, took her last breath.
My son. Her Charlie. And autism. Yes. Autism. Charlie is, for lack of a better term, "high functioning." Not a big fan of this term. I guess the reason is, while I am certainly grateful that he is able to attend regular school, and to have a friend or two, the children of other people I have come to know -- and love, admire and respect -- over the years have not been so fortunate. I hope Charlie is on the road to "recovery." Only time will tell. I just know that it truly breaks my heart to know about others who are not so fortunate. I suppose a bit of "survivor's guilt" comes into play. I am completely in awe of many people I have come to know of, and to have become Facebook friends with, who are SO very active in this cause. Our cause. People like Kim Rossi Stagliano, Julie Bailey Obradovic, Becky Peabody Estepp, and Kristin Selby Gonzalez who work so tirelessly and with such passion for our cause. Reading their writings very often provokes chills. And, tears, of course.
I watch Charlie closely every day I'm with him. He's soon to be 11, but yet, I think he's in many ways more seven or eight. One disadvantage of only having one child; no other to compare him to. I see him at times struggle socially, and it breaks my heart. I try not to immediately "jump in," to rescue him, and remove him from his frustration and incredible angst. He does not understanding teasing very well. I worry about bullying in the future. My most dear, respected, and admired autism parent -- AND FRIEND -- [who just perhaps, maybe, oh alright does, have a little something to do with this website], recently told me that Charlie will deal with this social stress "organically." I most certainly trust her opinion, and pray she is correct.
I will never forget these words by the late Jim Valvano. He spoke at an ESPN awards ceremony in March 1993. LAUGH. THINK. CRY. He was then battling cancer, and died the following month. While in NO WAY would I ever equate the "battle" of being an autism dad with the battle fought by Mr. Valvano, I just am so touch by these words. And, for better or worse, I do these three things on many days.
Father's Day. My favorite day. I truly know I was placed on this planet to be Charlie's dad. And, my Mom's son.
To all the Dads, only the best to you. Don't give up, don't ever give up.
My mom loved ben. Wish I could push a button and "love" your post.
Posted by: Dan Burns | June 20, 2016 at 10:09 PM
Thank you! Happy Father's Day all!
Posted by: Jeannette Bishop | June 19, 2016 at 10:47 PM
Thanks for writing again, Fathers Day (like many days these days) is a bittersweet thing. Drawing a bit of strength and perspective from other dads really helps. Your son rocks, BTW.
Posted by: Randy | June 19, 2016 at 10:18 PM
Chuck, I admire you so much - and I love Charlie to the moon and back. I have no concern that Charlie will not succeed and become a contributing member to the human condition. With your support and the love, prayers and support of many others, how can he not become the success we all envision for his future? May God continue to bless and encourage you.
Posted by: Richard Benson | June 19, 2016 at 06:57 PM
Beautiful post! Happy Father's Day to all.
I just wanted to mention that some cases of ALS have been found to be misdiagnosed Lyme Disease. Please read this article on Dr. Dave Martz, who was diagnosed with ALS, but recovered after treatment for Lyme and coinfections. His story is also told in more detail in the book Cure Unknown by Pamela Weintraub. I certainly think for anyone with an ALS diagnosis, it's at least worth a visit to a Lyme-literate physician. https://www.lymedisease.org/372/
Posted by: PANDAS Mom | June 19, 2016 at 04:14 PM
"What essentially motivated me to write this at this time is the fact that it is Father's Day. Charlie is my only child. My pride and joy. My hero. And my Mom's only grandson."
Just returned from celebrating "Father's Day" .. myself being a "grandfather" of my son and his lovely wife's two children .. the oldest being Bobby .. a sixteen year old .. fixated on Elmo .. non-verbal .. very happy .. loveable boy .. and .. his equally loveable 13 year old sister .. who is very caring and protective of her autistic older brother.
Today being just one day .. of 365 days a year .. that my wife and I are reminded of the strength and love our precious grandson has been shown by his devoted parents and sibling ..
Sometimes I cannot help but wonder if I would have had the same strength and love as my son and his wife have had .. because .. as devoted parents .. they have been truly inspirational to watch these past 16 years ..
While my son has accomplished many things in his life that made ME proud .. athletics, scholastics, employment, etc .. NONE of those accomplishments .. comes close to the pride I have for his unconditional .. loving role .. as "dad" to my grandson.
My friend .. from what you have posted today .. Charlie is extremely lucky to have the dad he has ..
God bless you and Charlie ......
Posted by: Bob Moffit | June 19, 2016 at 03:18 PM
Your doing a great job, and plenty on here know how hard it is seeing the rewards when they come have huge meaning well to us on here anyway.
MMR RIP
Posted by: Angus Files | June 19, 2016 at 03:07 PM
This is beautiful and brought tears to my eyes. Best wishes on your journey and thank you for sharing. Charlie certainly is handsome and what a smile he has!
Posted by: Dana | June 19, 2016 at 02:52 PM