My Dagney, she is a true artist.
My Dagney, she is a true artist.
If not for autism’s worrisome presence in my life, I’m pretty sure that I wouldn’t have one of these. Sure, I might be occasionally stressed or worried, as a mom with two young kids, a full time job and a tight budget is wont to be. But, I’m fairly certain that this little nuisance, my panic button, would not be my ever present companion.
Some days, I forget that it’s even there. It’s not as if life is perfect on those days. Life just happens, and I deal with it, good or bad. Shit might happen, but I’m able to shrug my shoulders and move on. Or even better, shit might not happen, and all is good.
Then there are the other days, the days when just dealing is not my forte. The worst are the days that masquerade as the good, level, calm days, but then it hits the fan. On those days, for whatever reason, I am vulnerable, and I don’t even realize it. I get blindsided. It can go something like this…
I’m standing in the checkout line at the grocery store. The 3-year-old in the cart in front of me is chattering away. Geez, she’s practically reciting her doctoral thesis, and mom isn’t even paying attention. I’m seeing the future of America here, folks, lucky freaking me! Hank is almost 5, and he doesn’t say a single recognizable word. Will he ever tell me he loves me? Does he even understand when I say it to him? I get a lump in my throat, a hollow ache in my chest. I feel something under my foot, and I look down. I’ve stepped on a panic button…damn it.
I read a Facebook status posted by a friend with an autistic child the same age as Hank. Wow! He is doing really great. I am so happy for them! Fully potty trained! That is fantastic! Yeah, that…is…great. Will Hank ever be potty trained? Will we still be changing his diapers when he is 14? I push away from the computer, but it’s too late. I have already hit the big, red panic key that I swear wasn’t on my keyboard just a few minutes ago.
That’s how it often goes. My panic button is a stealthy little bastard. I step on it. I sit on it. Sometimes a dirty look will set it off. Some days it patiently follows me around until I acknowledge it’s presence, no subterfuge necessary. Some days it’s almost comforting. I will sit at my desk and tap-tap-tap a rhythm on it while all the awful doubts and scary questions scroll through my head like the opening credits of a Star Wars movie.
Just a few days ago, I had a panic moment. I’m not even sure what set me off, but I was reduced to a soggy, blubbering mess. When I got home from work, John and Hank were out in the yard. I watched as John gave Hank some directions. They were the opposite of what Hank wanted to do, but he did it anyway. Later, Hank wanted cookies that he thought were on top of the fridge. I showed him a box mix for gluten-free cookies as a substitute, and he smiled and pushed the box to me in his way of saying, “Yes, I would like some cookies, please. Thank you.” He then waited patiently for the cookies to bake, although he did want to peak in the oven a couple of times. He quit asking for the cookies on the fridge. Later, we shared cookies. In a moment when I wasn’t paying attention, he went to the kitchen and returned with two big handfuls of cookies. He had a huge grin on his face because he knew he had gotten something past me. He looked me right in the eye, and I could see the mischievous twinkle and the innate intelligence that resides there. Then we played his new favorite game. It involves him stealing something from right under my nose (which he is extremely good at) and then running away while laughing riotously and glancing back to see if I am giving chase, which I always am. Much tickling ensues.
That night, I was lying in bed enveloped in a rare sense of calm. I imagined my panic button sitting on my bedside table, placed carefully behind the alarm clock so that I wouldn’t accidentally hit it instead of the snooze button. I thought about my evening. It had been so lovely. I had seen something that had not been visible to me for the last six months. I imagine that it was there all along in some degree, but I was incapable of seeing it.
I saw progress. Hank has made progress. He is understanding so much more. He is following directions. He is looking us in the eye more often. He is playing games with us. He is interacting in more meaningful ways. He is as cute and joyful as he has always been, and more so. I saw what I needed to see that night. And trust me, I really needed to see it. It was like food for my soul.
So, my kid has autism. I have a panic button. It is what it is. It is my beautiful life.
pictures now…words later…
I am changing all the names on here to make this sucker anonymous.
Dagney is now the daughter. Hank is the son. John is the husband. I shall remain myself since my name is in the URL.
Big prizes to whomever comes up with the origin of the names…wanton sexual favors, 5000 points toward your biggest goal in life, whatever your wee heart desires…
This little nugget of wisdomly wisdom came lilting from the backseat of my car one day.
Me: But, Dagney, you don’t even like pickles…
Dagney: **smiles in a way that conveys that I am somehow missing something**
Me: Hmmm…well, I do like pickles. And, you’re right, life’s definitely not all pickles and rainbows.
This followed a conversation we had about Hank, autism, being different. It made me wonder if she already realizes, just a little bit, how much Hank’s autism is bound to effect her life…how much it already has.
I know that she loves her brother. There have been times that I have wondered about her true feelings. In my most pathetic moments, I have come right out and asked her, “You love your brother, right?” She always answers in the affirmative. However, it’s the unsolicited statements of love that are more convincing. I got out of the shower one morning to find “I love Hank!” written in the steam on the mirror. Other times, she will just blurt it out along with “I love mama!” and “I love daddy!” She gets excited when Hank gives her a hug, which doesn’t happen very often. It makes me sad and happy at the same time. It’s an emotional limbo that I have become resigned to, if not comfortable in.
I know that she longs for a normal sibling. She wants another brother or sister. One that will play with her. I long for that for her, but it’s just not practical. I only ever wanted two children. But now…if I was a bit younger…if we were more financially set…if we had a bigger house…if, if, if…I would do my best to give her that normal sibling experience. A little while back, I thought I was pregnant. It turned out that I was not, and I mourned that little life that blipped in and out of existence, if only in my mind. I mourned the loss of that chance for Dagney to have normal sibling interaction. I regretted the loss of that chance for it to not all be on her small shoulders one day.
She loves him. Despite the fact that he raids her closet for her clothes hangers. Despite the fact that he blows through her room like a miniature tornado. Despite the fact that we don’t always get to go and do things that many families do with ease. Despite the fact that she has to explain him to her friends. Hopefully, her sibling experience will teach her so many of the good lessons in life…tolerance, understanding, hope, patience, humor, love. I see all of these attributes blooming in her already. Some of them more than others. Hopefully, we can avoid the thorns and pitfalls…bitterness, jealousy, hate.
“Life’s not all pickles and rainbows.”
Maybe Hank is the pickle. Maybe autism is the pickle. Maybe it’s one of those sweet pickles, so that if you have to eat a pickle, it’s the best possible pickle. Maybe I am giving her too much credit, and she was just talking nonsense to mess with me.
Maybe I will have a turkey sandwich for lunch. With pickles. The sweet ones.