Its Easter Sunday, and we are babysitting.
My phone beeps.
“Just arrived in Rome. How are things?” A text from our son Saqib.
“Omar had a good night’s sleep, just had breakfast, and is doing fine,” my husband Khalid texts.
Khalid and I do the math and figure it must be around 5 p.m. in Rome. They will have the evening to start exploring that beautiful city.
Omar hasn’t said anything about missing his mom and dad, or his sisters Laila and Sofia. But he keeps going to the mudroom, putting on his jacket, swinging his school bag over his shoulders, and reaching for the garage door.
“Omar, there is no school today,” Khalid reminds him each time.
Omar says nothing, removes his jacket and school bag, and walks back into the kitchen, wringing his hands. Then he is back in the mudroom, putting on his jacket.
“Lets do some puzzles Omar,” Khalid flips open Omar’s blue tablet.
“He wouldn’t let me shave him, but after a few minutes he was able to relax,” Khalid says.
Omar is sixteen.
Omar is non-verbal. Omar’s social skills are impaired. Omar has cognitive issues.
He was not quite three when I got an email from my daughter-in-law Saadia, informing me that my first-born-grandchild had been diagnosed with autism spectrum disorder. We were overseas. All I knew about autism then was what I had seen in the Dustin Hoffman movie, Rain Man.
‘Recovering from Autism’ became the driving force of our lives. I left my career to do whatever it takes to help Omar recover. I co-founded the New York chapter of the National Autism Association; we educated, advocated, supported, raised funds, amplified our voices in the media, and pushed Saqib and Saadia with a daily list of ‘do-this’ and ‘don’t-do-that’. Grandparents have flexibility that parents don’t—time; but grandparents are limited in making decisions for a grandchild, or in the direct role they play. We lived in New York City; they lived in south New Jersey—a two-hour drive. Spending daily afternoons with Omar doing Floor Time activity was not feasible, unless we moved next door.
What we could do was provide respite care.
When Saqib asked us if we could come and stay with Omar during spring break while he and Saadia took the girls on vacation, we were grateful to be of help. Omar cannot travel; he gets agitated on a flight, he won’t allow security to pat him down, he gets loud when his senses get over-stimulated, and he cannot sit still. He also tends to wander, and can get lost. He wears a GPS device and an ID button.
So, we are here with Omar. I can tell by his smile that he is happy in our company. We will take him out for walks, go to the playground, play flash cards, do puzzles, or just cuddle up. We will simply love him.
April is Autism Awareness Month.