John Bryan is a grandparent whose granddaughter Angelina has autism. When we connected and I asked him to be a guest blogger on Bridging the Gap, he was all in. The post below is very specific to his experience of learning that his granddaughter had autism, but I found that if you simply take out the word autism, and replace it with “disability” that the feelings and process that he describes were universally applicable.

I hope that you enjoy. For more resources on exceptional planning, check out the other posts on “Bridging the Gap,” or the “Eli’s Village” section of the website.

Thank you for visiting,
Kristin Carleton

Our Autism Grandparent Learning Curve
-John Bryan, 7/26/2020

In March, 2016, the week my granddaughter Angelina turned 2, she was diagnosed with autism and JC and I officially became autism grandparents. Angelina and Kelly, our daughter, had lived with us since Angelina’s birth, and thus JC and I were significant caretakers of Angelina. Kelly and Angelina now live in their own apartment, but JC and I continue to care for Angelina a few days and nights each week during Kelly’s shifts as a COVID nurse at a major hospital.

Autism was new to us and was unplanned, and so, like lots of autism families, we faced a huge and seemingly disorganized learning curve. Today, more than 2 years later, I am able to recognize that the learning curve that JC and I faced had 10 categories.

ONE – INFORMATION ABOUT AUTISM – We had some preconceptions, but had zero in-depth knowledge. Where should we start? The Internet presents a zillion informational websites and experts and other sources of information. Which ones are reliable?

TWO – MEDICAL ATTENTION – Angelina was a micro-preemie, just 1 ½ pounds at birth, so she had a variety of problems, and after 130 days in the NICU, she finally came home. We quickly learned that in our city (and in lots of cities) there is a long waiting list for appropriate physicians. Even though we live in a metropolitan area, we wound up with a developmental pediatrician at a smaller city 60 miles away, and a gastro-intestinal specialist in another city nearly 90 miles in the opposite direction.

THREE – THERAPY – What categories of therapy should/could we get for Angelina? Eating? Speech? Crawling/walking? And on and on. And where do you find providers of the therapies?

FOUR – PUBLIC SERVICES – Do our city, state, county, and federal governments provide any services or funding to help Angelina? How do you learn about all of this? How do you navigate the forms and processes and personnel? (We’ve learned that the answers always include the word “whew!” And other words too!)

FIVE – SUPPORT GROUP – Whom can we befriend who has walked in our shoes or is currently walking in them?

SIX – RELATING TO OUR DAUGHTER – I assume that “paradigm shift” is an appropriate term for every brand new grandparent-parent relationship. But how can we be helpful to Kelly without being overbearing or judgmental? How can we impart new knowledge to her without sounding dictatorial? How can we handle our multi-day/night weekly caretaking of Angelina without infringing on Kelly’s parenting rules and procedures? How do we make our relationship with Kelly continually stronger and ever more loving – rather than the reverse?

SEVEN – OUR OWN HOME AND TIME – How would JC and I approach the fact that the use of our time and the structure of our home must change significantly? Electric outlet protectors, car seats, stove guards, and a zillion other considerations were urgent. And the top priority for our time – our most valuable commodity – was now Angelina. How would we adjust to letting every other use of our time be secondary and often expendable?

EIGHT – THE REST OF OUR LIVES – The paradigm shift also included the fact that Angelina would dominate the remainder of our lives. And our caretaking of her would likely preclude any future travel or major projects. We would need to learn that any plans of any kind were always subject to cancellation. How would we learn to embrace this happily and lovingly?

NINE – TAKING CARE OF OURSELVES – JC and I were suddenly confronted with the fact that Angelina’s well-being would be dependent on our own well-being: physically, mentally, and emotionally. Would it be possible for us to adjust things so we could eat better, exercise better, sleep better, relax better, etc.?

TEN – MONEY – We now had a granddaughter who may well never be able to provide for herself financially. What role could we play in her current and lifetime financial needs? “As much as you can” was the most common answer when we would Google “How much money should you bequeath to care for an autistic grandchild?” How do you maximize “as much as you can” and do it in a taxwise way? What are the legal and governmental considerations that we should be aware of?

It is now summer of 2020 and thankfully, JC and I have made good progress in all ten categories. Angelina is long-since weaned from the various wires and tubes that were attached to her when she came home from the hospital. Her food-aversion is a thing of the past, she is talking in complete sentences, and she is in a great school. Her surgeries are all behind her and she enjoys wonderful physical health. And best of all, she is a happy little girl.

We have learned that there is no good way to plan in advance for autism. And a favorite quote is from Mark Twain: “You can learn things from carrying a cat by the tail that you can learn no other way.”