A recent post on The Thinking Mom’s reminded me about the roles grandparents play in the autism epidemic. I believe in many cases they are the unsung heroes of much of what we’ve been able to accomplish in the pursuit of health, truth, and justice. I know for me personally, there’s no way I could have saved my daughter, kept my sanity, and found time to advocate were it not for my parents on both sides. No way.
Thinking about them actually brings tears to my eyes, especially when I remember my mother making an honest, quiet comment to someone in a conversation years ago. I don’t remember it word for word, but I do remember the gist of it: how hard it was not only to watch your grandchild suffer, but your own child as well, and mostly how helpless and painful that felt.
The thought stopped me in my tracks. For so long I had been completely wrapped up in my own pain. It had never crossed my mind to think about how she felt, or how my father felt, or how my in-laws felt. I was completely focused on my daughter and myself, oblivious to the toll this was taking on them.
I thought about it then. What was it like for her, watching me in so much pain? Was she walking on eggshells around me? Of course she was. Truth be told, I’m not the easiest person to deal with when I’m on a mission. No one knows that better than my mother.
On a few occasions we came to blows. As always, she was right. I was out of control, taking on more than I should. Forgetting to take care of my other children and relationships with the same intensity. Trying to save the world, but not making time for a nice meal with my family.
She insisted I come to terms with my anger and would constantly tell me she was praying for me. It would anger me, as stupid as that sounds.
Don’t pray for me! Pray for Eve!
Most of the time though, she was my biggest rock. Mom got Eve on and off the bus everyday, making sure the harness was right each time. Mom watched the other two while we went to this doctor and that doctor. Mom bought us gift certificates for date nights with babysitting included so we could remember our marriage was equally important. Mom bought the tickets to my first autism conference…and went with me.
Mom (and dad) sat us down and said whatever we needed would be done and paid for. And it was.
Mom was the one who got into it with the pediatrician when he tried to tell me that some kids just shake their heads, flap, and stim for no reason. She was not having that, and she let him know.
“I’ve raised three children, many nieces and nephews, and have watched many of my friends’ children grow up as well. That is not normal!”
I was and always have been in awe of her.
My in-laws were equally supportive. My mother-in-law is a caterer. They are immigrants from a poor village in Eastern Europe. There is no such thing as “organic” to them. It’s just food; food that you grow in your yard and store on dozens of shelves in glass jars in the basement. Food is everything for them. Food is love. And if we needed anything at all for the diet, we got it. (I have often told my “mamma” that if she ever wants to be rich, all she has to do is begin a biomed catering business!)
Together, we all recovered Eve. Their role, emotionally, physically, and financially is incalculable. And I am ashamed to admit, I’m not sure I’ve ever properly thanked them. Here goes:
Thank you, mom. Thank you, dad. Thank you, Baka and Dida. Thank you, thank you, thank you. A million times, thank you.
That said, I thought it would be nice to let them speak for themselves. I interviewed my mom and asked her for her perspective on the whole thing. I think she probably speaks for lots of grandparents when she shares these things. I hope you read them with an open heart and that tonight, in addition to our children, you add them to your prayer list. The grandparents are helping and hurting too.
How soon did you realize there was something wrong?
This is hard, but I suspected Eve was having problems when she was an infant - around her 1st birthday. I felt she was having developmental issues. She wasn't making eye contact and had little to no baby babbling. Her responses were slow with little emotion and she didn't interact with "patty cake" or "so big". Also, her abnormal drooling, and logrolling (instead of crawling) added to my suspicions. She was a late walker, and I felt that her gate was abnormal and unsteady. I thought that maybe some of her unsteadiness was due to her repeated inner ear infections.
Another thing was her need to rock back and forth. When she was 2-3 I took her to the Dora the Explorer live show with my friend and her granddaughters. That is when I really knew, because she didn't interact with the children at all. During the entire show she stared at the spinning colored circles on the ceiling. She showed no emotion, never watched the show, just held her ears and watched the circles. At her 3rd birthday party, I watched her laying on the kitchen floor stimming and again no interaction with any children. I had never seen a child stim before Eve, and I knew there was a problem.
Were you afraid to tell me?
It wasn't an easy topic to discuss with you. I talked with your grandma, your aunts, and my friends about my suspicions.
Did you ever have doubts about what we were doing to help her?
No - I didn't.
How did it feel to watch her slip away and see how it affected us?
It was very difficult. I worried about Eve and about you and Matt individually and your marriage as well as the other two kids.
Did you feel like you didn’t know your place?
No, I knew my place was to support Eve, you and Matt and the family.
How do your friends feel about the autism epidemic and the current health of our kids? What is your perspective?
All of my friends believe that there is a huge autism problem today that did not exist 30-40 years ago. None of my friends or their children suffered from autism or severe allergies like today. I knew no one with autism growing up or during the time I was raising my children in the 70's and 80's. I never heard of autism until the St. Elsewhere television program in the 80's. We all know this didn't just happen without a cause.
How do you respond to the idea this has always been this way?
Hogwash! That is nonsense, and no statistician can prove that theory. They simply can't because autism was extremely rare - so rare that most people never knew anyone who was autistic or even heard of it before the 90's.
What is like to watch Eve make so much progress?
Exciting and joyful!
Do you still worry about her?
Not worried, but concerned how she will respond to her challenges. I pray that she will find good friends to help her along her way and that she will develop her talents and not be defeated by her limitations.
What do you want parents to know about what grandparents are going though?
Just that grandparents only want the best for their children and grandchildren, and that it is hard for them too. I would tell parents to trust their own parents’ insights because they have wisdom from their parenting experiences, and this is often overlooked or rejected.
Julie Obradovic is a Contributing Editor to Age of Autism.