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John's Story

My daughter Kelly, a full-time nurse at a major hospital, and her 4-year-old daughter, Angelina, who is autistic, lived with me and my wife from Angelina’s birth until just a few weeks ago. I’ve been Angelina’s primary caretaker when Kelly is at work.

Angelina was a micro-preemie — born at 25 weeks and weighing 1 ½ pounds. She spent her first 130 days in the NICU and survived lots of bad stuff. When she came home she was tethered to one wire and two different tubes, but all of that is gone now and she’s healthy and happy.

I suspected autism at about 10 months – no eye contact, no smiles, and other things. She was officially diagnosed the week she turned 2. A few months later she entered a school that provides ABA therapy. Her developmental pediatrician currently predicts that Angelina will be what they call “high functioning” but of course it’s only an early prediction.

Angelina sleeps well, eats well (after initial years of troubled eating), is beginning to talk in full sentences, and continually makes progress. Yesterday, for example, she started saying and gesturing “rock, paper, scissors.” I asked her if she’d learned that at school and she said yes. This sort of thing is a big, big progress step for her.

Angelina has so many good qualities. She is generally happy, is able to play by herself for extended periods, is very social (she loves to engage with others, especially children), and enjoys learning. (And she’s making great progress on being 100% potty trained!)

My wife, JC, is a full-time artist with local teaching responsibilities and annual international residencies. JC’s chemistry enables her to give Angelina unconditional love and attention and hugs and kisses and understanding. My chemistry is a good fit for the need for timing and details: how to deal with Angelina’s medical needs, how to get her in and out of her carseat and deliver her on time to school and appointments, remembering to include all the right stuff in her bag, and myriad other details and procedures. Thus JC’s most valuable role as a grandparent is providing love, and one of my valuable roles is providing attention to detail.

As I write this, Angelina has just had her 4th birthday and there is bright hope for her future.



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