I Wish I Had Known Earlier…
My son was an obstinate and challenging kid. He persisted daily on battles large and insignificant until I finally fell into bed… physically and mentally exhausted. For most of his childhood, I wished he could just comply like all the other kids. Then, following his cancer diagnosis at age 36, Jeff’s ADHD traits became his biggest assets — and an inspiration that radiated far beyond our family.
“If you want your children to improve, let them overhear the nice things you say about them to others.”
My 42-year-old son passed away recently, following a 6-year battle with cancer. He was not an easy child to raise, and I often called him the poster child for attention deficit disorder (ADHD or ADD). His challenges began at 6 weeks old, with an eye disorder that resulted in a downward, rapid flip. It was scary and baffling. He was hospitalized for 10 days at Children’s Hospital, in Detroit, where experts put their heads together to eliminate horrible options: tumor on the optic nerve, epilepsy, a serious neurological disease, etc. He was released with a vague diagnosis of “Minimal Brain Dysfunction,” which was also what ADHD was called prior to the 1970s.
The mystery of Jeff, it turns out, was just beginning.
As he developed, we watched for neurological glitches that doctors warned us might show. The professionals were not sure how limited he might be in walking, talking, etc. The nightmare of worry began with small things: poor eye-hand coordination, late walking, and mirroring with his left hand whatever his right hand was doing. To confuse us… he talked early and at a high level of competency! What was that about? He finally walked at 17 months and ran immediately. He appeared to comprehend abstract concepts early and grew into a delightfully active toddler.
We were collecting long lists of positives and negatives all at the same time. His verbal skills advanced and his self-knowledge seemed off the charts. Yet he missed a lot of what was said in preschool and didn’t seem to be doing what “everybody else” was doing. The night that his kindergarten class had Open House for parents, he cried bitterly before his dad and I left the house to attend the event, begging us not to go. Questioning why he was so upset, we learned the children had all been asked to draw a picture of themselves that the teacher then proudly hung on the bulletin board for parents to see. Jeff KNEW that his didn’t look like anyone else’s drawing and he felt humiliation at 5 years old. We assured him that everyone is unsure of their artistic abilities and whatever he drew would be just fine. As we walked into the classroom, we saw the drawings displayed. Without speaking we both wished that the ONE obviously different wasn’t Jeff’s, but… of course it was.
This was the beginning of a long and difficult educational process that we all painfully endured.
Elementary school was a nightmare of IEPs and special-needs discussions. This was the late ‘70s and early ‘80s: the infancy of educators understanding special needs. Jeff’s 5th grade teacher told us “If I make exceptions for Jeff then everyone will expect the same.” We fought for every accommodation that helped increase the window of opportunity to learn. There was still shaming and putting Jeff up as example of “not trying hard enough.” His self-esteem suffered and he began to gravitate toward other kids who also struggled and/or didn’t care much about school.
The flip side was Jeff’s strong desire to be independent. At 11 years old, he applied for a job sweeping up at a nearby hair salon. He was paid once a week, which made him feel on top of the world! He had the start of a strong resume at this tender age.
A well-known trait of many kids with ADHD is that of obstinance. Each day felt like a battle of wits and stamina, as he exhibited defiance to the maximum. Lying in bed at night, I regularly asked myself if I could possibly fight again tomorrow all of the battles I had faced today! He persisted on important things as well as seemingly unimportant things. WHY? Why was I not able to “wipe that out of him?” Why couldn’t he just buck up and be like every other kid and do what he was told WITHOUT the battle, rage, drama and exhaustion???
In high school, we actually encountered a positive parent-teacher conference! The business teacher glowed about the strengths she saw in Jeff. She predicted that if he went to a small business school, he would blossom. She arranged for him to have “co-op,” which was an opportunity for him to leave school (that alone would have been a treat) and work at a nearby appliance store, selling washers, dryers, refrigerators, etc. He learned all there was to learn about each appliance and sold with knowledge, grace and personality. He was a star!
Upon graduation from high school (a constant source of argument… as Jeff detested each day in class, begging to drop out and get a GED instead) he went to Northwood University, a business school targeting the car industry. Cars were Jeff’s passion. He began working in car dealerships, successfully proving his outstanding salesmanship skills at an early age. He was in his element at last! He felt grown and competent as he sold his beloved cars, with passion.
Jeff had several careers in his lifetime: car sales, commercial real estate, insurance, and buyer for a car dealer. He studied and secured any needed licenses. His work ethic was amazing, as evidenced by the fact that nearly all of his previous bosses attended his funeral and shared with us glowing memories.
At 36, Jeff was diagnosed with neuroendocrine tumor, which started in his pancreas. He spent 6 years fighting every day — with medication, surgery, chemo, and finally the process of dying. His strength and endurance was admired by anyone who interfaced with him. There were times he felt like quitting the fight. But, with his wife Jasmine by his side every step of the way, he displayed positivity and persistence. He missed very little work, maintained strong family and friend relationships and became an amazing husband, father, son, brother and loyal friend. He became an example for his two daughters, friends, and family. He taught martial arts and served as a role model for his students. He and Jasmine were involved in a charity for kids with cancer.
The obstinate and defiant little boy had become an exceptionally brave man. I went from wanting to wipe out what I perceived as negative traits… to telling him often that he had become my hero! I feel fortunate to have been given the time to express that to him.
But, how I wish I had noted how perfectly determined he was back then! How I long for a do-over that would allow me to reinforce his strengths and not try to make him into “everybody else.” He wasn’t like anyone else. He was Jeff. He was amazing.
I wish I had known earlier…
Updated on August 21, 2019