Hard Days are Allowed

When I think about my experience with autism so far, there are a few moments of awakening that really stand out.

One of those was Johnny’s second birthday. We had known about his autism for four months and, naively, I thought that the ups and downs we had experienced since that time meant we were “through” the acclimation phase. I thought that we were already prepared to settle in to our altered version of normal.

That day, we drove over an hour to meet with most of our family and wanted to incorporate a birthday celebration for Johnny. Johnny was anxious as soon as we walked in the door.

He doesn’t acclimate well to large groups of people and he usually asks immediately to be taken outside. He asks by grabbing the closest person by the hand, dragging them to the nearest door, and throwing their hand at the handle. He then says one of his only words, “OPEN,” and cries if he isn’t taken outside.

Because of this, we had been outside almost the entire time that day. My husband and I took turns sitting in the yard as Johnny threw fistfuls of sand or dirt into the air.

Watching dirt, sand, or leaves fall to the ground has always been a favorite visual stim of his. He found some old charcoal ash from a grill and it was growing impossible to keep him away from it. His face, hair, and hands were covered in a sandy, sooty, dirt mixture.

Finally, we were able to coax him inside to eat and he settled into playing with a shape sorter toy for a while. He loved rotating the shapes quickly in front of his eyes and we were just relieved that he was inside.

It seemed like the best chance we would get to sing to him for his birthday. We put a candle in the desert and family gathered around to sing. My husband has a big family, and most of them have children, so there were easily 25 people making a circle around Johnny as they sang happy birthday. Something any of my other children would be absolutely thrilled about.

I have five children and I remember each one of their second birthdays. A 2nd birthday is usually exciting because it’s the first birthday that the child is fully aware of. I have a favorite picture of one of my daughters proudly holding up two fingers and grinning ear to ear on her second birthday, waiting for guests to arrive. Her guests. She was so excited, it was contagious.

On Johnny’s second birthday, he seemed completely unaware that this day was different than any other. He seemed not to notice people were singing. He certainly didn’t notice people were singing for him. He kept rotating a wooden triangle in front of his face. We called to him, clapped, and eventually blew out his candle. He never looked up.

I felt sad and somehow negligent. Negligent because I was just sort of waiting for it to be over. Hoping it would be over. None of this was for him. It was for us, for me. It was because we were supposed to do it this way. And, going through the motions felt like salt rubbed in the fresh wound of our diagnosis.

I remember realizing then that everything in our life would be different. Really different. Even something casual, like singing on a birthday, would need to be intentionally prepared for. We would need to do it at our house, remove toys and distractions, make sure he had gotten enough sleep the day before, make sure we had practiced multiple times with less people.

And it still might not work. He still might not like it. It still might be more for us than for him.

I didn’t want to do things just because we were supposed to. I wanted to do things he would enjoy. That day, I realized just how hard it was going to be to do things we could share with Johnny, to stumble on the things he would truly enjoy. Doesn’t every good parent want to make their child happy?

There was no picture of that birthday. Something I regret. But, what would it have shown? A mom off to the side with a vacant look on her face . . . waiting for the song, the occasion, to end. The top of a little boy’s head as he rotated a triangle in front of his face. A group of people singing, trying to pretend they didn’t notice?

I went home and finally cried myself to sleep about how unfair it all was. I’d already spent plenty of time crying because I was afraid for Johnny, afraid for his future, afraid for all of us, but I’d never cried because it just plain wasn’t fair. To any of us.

We should be able to enjoy a birthday, HE should be able to enjoy a birthday. At the very least, we should be able to be openly sad that we couldn’t enjoy a birthday. But, there was no space for that either.

Much of the world seems to expect us to go through the motions happily. Pretend everything is always fine or improving. Parents with special needs kids are only allowed to speak positively.

We are supposed to be parents of children that teach everyone about tolerance and acceptance. Never parents who are sad that their kids can’t share experiences or parents who feel sad because their children are frustrated. Sadness from a special needs parent is not P.C, especially in the autism community.

If you are honest about the hard days, you risk being accused of not appreciating your child enough. As if feeling sad that your child is frustrated or alone could possibly mean you love them less.

If you express frustration over not being able to communicate with your child, people accuse you of only wanting to talk to them for your own sake. What kind of parent doesn’t want to communicate and share life with their child? Wouldn’t not wanting that make for a terrible parent?

People accuse you of only looking on the down side of autism, even if it is the first hard day you’ve shared after spending month after month only mentioning the happy days and happy pictures.

I realized there were often going to be times that were truly hard. Hard for me, hard for my family, hard for Johnny, and that we were often going to have to go through them alone. I think the alone part was the harder realization.

My hope is that our tribe will grow gentler with their assumptions. That we won’t suggest by our responses that parents having hard days love or value their children any less than they do on good days. Even autism parents.

I hope we will provide each other with safe space to be sad, to feel disappointment and fear. I hope we will be allowed to speak up when times are hard, and still be known as parents who love their children immeasurably.

I hope we will give each other room to value the spectrum of emotions in our stories, that we will sit with the truth that there is beauty and value in every one of our days, even the sad ones.

Written by, Sarah Wenger

I am a teacher at a title I school in Baltimore. I have five children. My almost three year old, Johnny, was diagnosed with autism at 18 months through Kennedy Krieger. I’m a busy mom, teacher, graduate student, runner, and writer. You can follow our journey on our blog, Love Beyond Words and on Facebook at https://www.facebook.com/ourlovebeyondwords/.

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