I wasn’t staring at you to be rude. I couldn’t help but notice your daughter’s jumping, the flapping, and the lack of eye contact. She was intent on watching her videos on the iPad, only taking off the headphones when someone made her do it. I watched as you switched seats with her so she could sit with her back against the wall, thereby diminishing the possibility of her getting up and running off. I saw your jaw firmly set and your tired, frustrated eyes as you ate dinner with the rest of your family. I knew you were a card-carrying member of The Club.
I wondered, “Have you been where I’ve been? Have you lost your cool when you couldn’t take the perseverating and the yelling any more? Have you defended her in IEP meetings with every fiber of your being? Have you loved her so fiercely that nothing could ever shake your bond?” Of course, the answer to all these things and more is YES. You’re a part of The Club!
I couldn’t help but watch as your older daughter made attempts to engage her sister so you could eat your dinner. She was attentive, kind, and gentle. She reminded me of Joey. He interacts with Debbie much in the same way. I am aware of the responsibility he often assumes so that Vince and I can eat our dinner more easily. Older siblings take on so much. It comes natural to them because this is what happens when you’re a member of The Club.
I tried to eat my dinner, but my eyes and my thoughts kept reverting back to you. Where were you on your journey? Had you been traveling the road for as long as I have? Were you resentful or were you more accepting, or were you wavering somewhere in between? It’s a tough journey because some days are wonderful and you feel as if you can accomplish anything. On other days though, you feel like giving up and throwing in the towel. Then there are the moments where everything is imploding and melting down at once. And the only thing you can do is join in because sometimes nothing makes you feel better than having a good scream.
I’m sure there was a time when you thought your daughter would never eat in a crowded restaurant. But today she did, and you were elated. Was today the day she reached that milestone or was your dinner just the end of a long, difficult day? Of course, it could have been a day that was a mix of complicated emotions – excitement and disappointment all rolled into one. That’s what happens when you’re a member of The Club.
I doubt you asked to be a member of The Club any more than I did. But it is what it is, and here we are today leading different, yet similar lives. We both have daughters about the same age. They are both flapping. They are both stimming. They are both seemingly more engaged in their own worlds than in the world around them. We are both tired. We are both in need of an extended break. We are both members of The Club.
With that certainty firmly set in my mind, I went up to you before I left the restaurant and said, “Excuse me.” And when you looked up at me with surprise, I leaned over, looked directly at you, and added, “My daughter has autism, too. I understand how you feel, and I hope you had a very happy Mother’s Day.” Shocked at first but then relieved, you looked at me and wished me the same. Perhaps I didn’t change much about your day. But I hope that my gesture put a smile on your face, knowing that there are others who understand your life, others who get it. I also hope one day you will pay it forward to another member of The Club.
xoxoxox ~ Julie