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Voice of Experience

Voice of Experience: March 2023 | Transition

Thanks For Noticing - Finding Joy Amid the Shadows of Life

Stanley Peter Jaskiewicz


  • The experiences of facing challenges such as a child diagnosed with autism, a wife with cancer, and yourself with heart disease and requiring open heart surgery can provide valuable insight into love, resilience, and the strength to face these challenges.
Thanks For Noticing - Finding Joy Amid the Shadows of Life

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If I have learned one thing in my careers – 38 years as a business lawyer, 28 years as a husband and parent, and 26 years as a disabilities parent – it is that “experience” can come in many forms, and is often unexpected.

Fortunately, most of mine have been good, even great, even if it may not have seemed so as I lived them.

I think the key, for me, has been finding the joy in each one, even, at times, amid the sorrow.

(Those who share my Jesuit education may recognize this under a different rubric.)

For example, we are parents of an adult son with autism. 

We are very proud of all he has accomplished – he is an Eagle Scout, college graduate, and now holds a job (while looking for a position as a writer, particularly as a technical writer, in which he excelled in school).

We have also been very active disabilities advocates since his unexpected diagnosis as a toddler.

Our philosophy has always been that if we find useful information for our son, we have helped one person.  If we share that information, originally on parents’ listservs, and now on Facebook, we can help many people.

But sometimes those experiences are, in fact, more personal.

One occurred with a grandmother who sat on a nonprofit board with me.  I have quoted it anonymously many times over the years in speaking with families of newly diagnosed persons with disabilities.

She approached me in tears after a board meeting, explaining that her grandson had just been diagnosed with autism.

I asked if she had loved the grandchild before the diagnosis.

She immediately replied, “Of course” – to which I countered, without skipping a beat, “What changed?” 

In other words, I wanted her to realize what I had learned from my son.  The presence of a disability is irrelevant to love for a child, here, her grandson, and her relationship to him.

She may have had to learn to communicate with him differently than she had done with neurotypical grandchildren.  But this child was just as deserving of her love and attention. 

In fact, he may need even more from her, because of the many demands involved in obtaining services and therapy on parents of a newly diagnosed person with a disability.

I had first realized that truth one late night with my son, at a very young age. 

He had always been a difficult sleeper, like many children with autism. 

That night, a cold really bothered him as well.

As I lay next to my son, hoping to calm him, I couldn’t stop thinking about the recent autism diagnosis.  What would it mean for his future?  How would it affect the rest of our family?

I usually tried to calm him with a quiet, running patter of familiar stories and events.

Without planning to speak them, however, comforting words naturally came out:

“Peter, Daddy loves you just the way you are, and Mommy loves you just the way you are, and your sister loves you just the way you are. And God, who made you, loves you just the way you are. If you’re good enough for Jesus, how can you not be good enough for me?”

I was stunned by the obvious wisdom of these words – and knew they were from God, and meant to comfort me, as well as my son.

That night I learned that the best gift I can give to my son, like any child, diagnosis or not, was unconditional love.

(I had not rehearsed this dialog.  I just reacted to his discomfort and insomnia – a trait we share -  based on my life experience.)

This experience of unexpectedly finding the right words has not been unique for me.

As a disabilities advocate, I am always glad to speak with anyone about our journey with our son or disabilities issues, and how we learned to help him – because many, many people helped us along the way.

I repay that debt by trying to help others with practical advice, not as a doctor, but as a parent.

As a result, over the years, I have published frequently about health challenges our family has faced, particularly my son’s autism.

Thinking back over all of our experiences I have described in print, I realized that they collectively describe the great experience of our lives together:

  • Acceptance of and stress over his initial, unexpected autism diagnosis, even though he had read, spontaneously, before his fourth birthday, or any formal instruction.  We were as shocked by the concept of a disability, as by the ominous label “autism.” (see here)
  • How we adapted our son’s preparation for his First Communion to his developmental difficulties. (see here) 
  • My disappointment that he chose not to attend my high school, a major influence in my life – and pride that he had the maturity to recognize that attending the school’s open house was important to me.  He gave up a Sunday morning for the visit, even though he knew that he preferred our local public high school with the peers with whom he had studied for 9 years.
  • My wife’s advanced cancer diagnosis (3C melanoma), despite none of the typical warning signs - and how we helped our son live with all of the changes it caused for his life and routines, a particular challenge for persons with autism. (see here) 
  • My own heart disease and open-heart surgery, despite what I had considered a healthy lifestyle. 

Fortunately, we are all doing well today.

What we learned from each of these events, however, was that we still could enjoy our lives with each other, regardless of the challenges. 

We are – and will be – resilient.  Regardless what bumps life may bring us.

Changes may have been needed – thanks to my wife’s Herculean efforts, my diet today bears little relation to what I ate before my bypass surgery – but living through each situation has made us stronger for it.

As St. Paul wrote many years ago (2 Cor. 12: 9 – 10), “Power is made perfect in weakness. … (F)or when I am weak, then I am strong.”

My most recent memorable experience arose from a truly unexpected source – a reader of this publication who asked for my help based on my article in the April 2022 issue of Voice of Experience.

The requested assistance was not, however, related to a legal question, or even to my “senior” age.  

Instead, a law professor was looking for help for a law student with the same disability as that of my son, hyperlexia, which I had mentioned in passing in that article.

Hyperlexia – the relatively rare, spontaneous ability to read, without formal education - is not a formal medical diagnosis in the Diagnostic and Statistical Manual of Mental Disorders.   But it often appears in persons with autism, as it did with my son, before his second birthday. 

(We had never understood his repeated requests to go to “AMK” (a phonetic rendering) until he got excited as we drove past a local AMC movie theater to which we had taken him.)

In the article, I had briefly mentioned it, relating my life-long love of reading to my son’s spontaneous ability to read. 

(From her question and the date of the article, I think the professor must have found the article through an online search on "hyperlexia.” From her biography, she also appeared to have a disabilities counseling role at her school.)

In any event, I provided her information to try to help her student, both about hyperlexia in general, and my suggestions on educational supports for a law student – for which she immediately thanked me:  

“Thank you so much for being so generous with your time and forwarding all those resources to me. I can't tell you how much I appreciate your time and effort -- and spirit. Thank you for sharing.”

This was exciting, but not unusual for me.  As I have done for many years, I write about my experiences in case they may be helpful to others, whether to a reader, to a client, or simply someone the reader may know.

I have even referred students with disabilities to my beloved high school’s arch-rival.  Not many Catholic academically challenging prep schools have supports for students with learning disabilities like the one it offers – not even my own.

But as a long-time contact on one of the disabilities listservs recently thanked me, after I complimented her for a comment about her that I had seen in the news, “So thanks for noticing!”

I am grateful for the thanks, but such assistance seems at the heart of the ABA, and what attorneys do.