Autism From a Grandparent’s Perspective

My youngest granddaughter is visiting this weekend. I have six of these treasures ranging from ages 10 to 18. I adore them. I drive 3 ½ hours one way to go to a 30-minute concert, only to turn right around and drive back to be at work the next day. I probably have ten thousand pictures on my computer of zoo trips and vacations and holidays and amusement parks and ordinary days.

I LOVE being their “Grangie”.

However, a visit from my youngest, Grandgirl #4, (GG 4) requires strategic planning. She is on the severe end of the autism spectrum.

I begin by stripping the “extra” bedroom. It was my youngest daughter’s room, but few of her things remain in it. I had always promised my kids that their rooms would remain the way they left them until they married, however, that was just one of many promises I have had to break over the past few years.

The things that I have left out are put in a closet that I carefully latch with the hook and eye snapping lock. The room is bare, nothing on the walls, nothing on the shelves, only extra clothes for my girl in the drawers. Some carefully chosen stuffed animals in a wooden rocker.

I go to grocery store to buy the “approved” foods. She seems to prefer foods with an orange cast. Cheetos, Goldfish, Walmart brand popcorn chicken, popcorn, and hash browns will make up her diet while at my house. I try to avoid going to the store while she is here.

I check the weather carefully. GG 4 LOVES to be outdoors. Visits to my house include trips to a local splash pad, the small one though because the large one will have too many people. She spends lots of time in a small plastic pool in the front yard and miles of her riding, nowhere, with me in the car.

I have a membership to the zoo located about 60 miles away. The zoo requires a special harness that I had made for her and a backpack full of drinks, snacks, and extra clothes. We never know how long the trip will last. She might be entertained for 45 minutes or an hour or ready to leave as soon as we get there.

Children’s Museums are not on the agenda. Too many loud people in a confined area. I’ve learned that even places advertised as “autism friendly” often mean a level of autism that is not as severe as her condition.

I’ve had my girl more this summer than in the past. It’s difficult to find affordable daycare for a 10 year old, 120 pound, 5’4”, severely autistic child. GG 4 is on waiting lists for all types of services, but our state has made the determination not to accept federal funding that would help her.

Her father and step-mother both work, so she does not meet income eligibility for SSI. She is in summer school half-days, three days a week for about six weeks, but the rest of the time she needs supervision. Thanks to understanding employers, part of the time is covered by her dad and step-mom working from home, part of it is covered by someone who comes in three half days a week, and part of it is covered by me.

Having her this summer has been a blessing in many ways. I have discovered that she has an extensive “book” vocabulary. She recognizes everything from an anteater to a radish.

However, she does not use the words in conversation.

She seldom verbally identifies the animals at the zoo. She did sing “Old McDonald Had a Farm” walking through our local county fair one year. The sounds matched the animals we were walking by-but that hasn’t been repeated.

She loves to have books read to her. This year I “made” a book of the family members that she sees when she comes to visit me. Each page says the same thing…the name of the family member pictured on that page, the word “loves”, and my granddaughter’s name.

As we read it, I ask her to identify the family members. It’s hit or miss, but we keep reading it. Not only to learn the family members, but to remind her that she is loved.

We play with puzzles. She can identify the name of letters and numbers. It is progress.

There were few self-harming episodes this summer. She generally bites the same place on her arm. There is a ring from the repeated abuse. I rub lavender and coconut oil on it, praying that we can figure out how to show her a better way to handle her frustrations.

She was only physical with me once. I don’t know who it surprised more, me or her. I was in tears, not because it hurt so badly or because I was embarrassed to have witnesses to it, but because I was frustrated that I had missed the cues of how deep her distress was at the moment.

I would be lying if I didn’t say that sometimes it hurts to watch other grandparents with their treasures. I want to say to them, “Do you understand how lucky you are? Don’t take these little things for granted, not all of us are fortunate enough to experience them.”

I feel isolated sometimes, like no one understands. But then I go into the bedroom to check on her, I lift the covers that she has burrowed under and say, “Grangie loves you.”

“Yeth,” she replies.

And I am struck by the fact that the deep voiced, lisping, “yes” isn’t an automatic response, that it took real effort for her to say it. And that she really does know that she is loved.

Written by, Kimberly Groom

Kimberly is  the grandmother of six darling grandchildren. Her youngest is on the severe end of the spectrum.

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