Finding Our Way in the Darkness

Paint

Two nights ago my daughter was sobbing uncontrollably on the hallway floor. The reason? She had removed a strainer from the cupboard and wanted it in the toilet. I had taken it out.

But that wasn’t the reason, really.

First of all, I have no idea how she even knew it was in the cupboard. She hadn’t seen it used in the toilet, so I am not sure how she decided it belonged there. And although I am 100% positive that my removing it was the source of her great distress—I may never know why it distressed her. Because in spite of the leaps and bounds she has made in communication, conversation is still not an option for us.

Other parents will reassure me by letting me know their children are unable to express what’s really going on inside their heads, too. I imagine children who have regular conversations with their parents do sometimes fall to the ground in fits of rage over something they can never quite put into words. And then I think, maybe this is one of those times and we are just like everybody else.

How can I explain the difference to someone who hasn’t experienced the ways missing conversation can truly keep you in the dark? It’s easy to throw up my hands and say “who knows” while I wait for her to calm down about an insignificant strainer. I strongly doubt it will affect her long-term. This one is easy. And really, it is more than slightly easier than the tantrums over something put in the wrong place, or because the neighbors didn’t park their car in exactly the same spot today. The good news is that it will pass, and she will survive. Maybe I don’t even need to know the details.

What isn’t as easy is when I do need more information and I know there is no way to get it. Like when she comes home from school crying, or comes down with an illness. I have no way of understanding what might be going on. I could ask questions all night long and never get closer to the truth. She would only go back and forth between completely ignoring my inquiries, and repeating the last word I said back to me.  Continue reading

How Will She Download 2016?

negative

Yesterday, through the wonders of modern technology, my best friend from second grade and I were able to travel back to 1984. Four years ago I had found an old home movie of us and shared it on her Facebook timeline. Then yesterday, the popular “On This Day” app reminded her of it, and she shared it back.

I was waiting in the car with Teghan when the notification came in, and we watched it together. It wasn’t easy to explain. Did she know what I meant when I said that was me? Is she able to easily put together that I used to be little like her, and that this video was taken many years ago? I’m never sure. Time is one of the most difficult concepts to describe effectively. But she seemed entertained.

In 1984 I was about the same age as my daughter is now. The video shows two friends putting on a show for the camera. We cannot take our eyes off of our own images appearing on the TV, and we are especially thrilled with the novelty of my dad turning the camera to “negative” mode.   Continue reading

My Little Runaway

Wander

Our daughter is a wanderer. Last month she managed to escape school. She found an opportunity during lunch; she slipped through the door into the gymnasium, and then out another set of doors onto the back lawn. Luckily a teacher saw her sprinting across the grass through a window—but she made it across the street and into the neighborhood before they caught her.

I wonder where she would have gone if that teacher hadn’t noticed her running across the grass.

I like to think I know my child pretty well. We sometimes practice walking without holding hands in safe areas, hoping to teach her the importance of staying with us even when we are not physically tethered. And it works for a while. But any random thing might catch her eye and she’s off—no hesitation or care in the world outside of getting to her destination.

Sometimes she just likes how a certain house looks and wants to go inside. Maybe someone has a porch swing, or she’s thirsty and sees a cup. She will drink out of any cup. ANY cup. But nothing excites her more than a body of water.

We recently visited some old friends who live on a small lake. It was a good visit for Teghan. She ate cake and played on their swing set. We knew the lake would be a temptation, but she seemed content to swing. We knew eventually she would go to the edge of the water and plunge a foot in. We aren’t new– we were prepared for that. What we were not prepared for was her unexpected sprint toward the lake, down the dock…. and that confident leap she took off the end of it.  Continue reading

My Monthly Budget Pep Talk

Rainbow Moe

We have enough. We don’t make as much money as we would like to; and I often have to remind myself that this is a conscious decision we have made for our family. But– why did we do this to ourselves?

Our priorities have nothing to do with money and everything to do with our daily happiness. Because isn’t that what the bulk of existence is—thousands of days that roll out into a lifetime? There are goals we make, and maybe we could reach them faster with a little more pain right now. But these minutes and hours are everything. And we would rather be poor on our own terms than financially comfortable on someone else’s.

Of course, we learned this through trial and error.

It isn’t the same for everyone. Some people have passions which appear in the form of time-consuming careers outside the home, while a large percentage of our happiness can be realized from the comfort of our living room. The fact that this applies to both me and my husband is both a blessing and a curse, I suppose.

We live in a culture which narrowly defines success and happiness, and it takes time and experience to figure out that one size does not fit all. There is no right or wrong, just a limited amount of time to get the most out of what we’re given.  Continue reading

A Language Built on Wants

fridge

The other morning we were awoken by the grand entrance of Teghan, as usual. I say “grand” because each time she will swing open the door and pause, excitedly; waiting for our acknowledgment of her presence before jumping on top of us. It’s an easy thing to take for granted, but I am still amazed at how different she is from the child who had zero interest in seeking us out in the morning—let alone consider jumping into our bed.

She can also dress herself and express what she wants. If it’s the weekend she will want to watch YouTube videos on daddy’s phone while snuggled between us. This is how we sleep in. Eventually she will get dressed and ask for breakfast. She knows she needs to get dressed first, and once she has accomplished it we know there is no stopping her from going downstairs.

Most of our conversations are along the lines of: “want…. cereal.” She is good at labeling with single words—she has definitely mastered the art of pairing anything with the word “want.” And that is where we have been stuck for a very long time. Continue reading

Mashed Potatoes on the Record Player!

alien

Easter has always been the easiest holiday for Teghan. Holidays usually include kid-friendly events like doubling their toy collection, taking candy from strangers, observing loud explosions in the sky…. but searching for symbols of fertility in strange places around the house? Our kid was made for it.

The Easter egg hunt was the first game concept Teghan ever understood. She is gifted at finding things. Remember the Wham! record? It has proven to be a good tool for vocabulary, too. At some point my husband figured out that if he placed eggs (or sometimes treats) on things throughout the house he could evaluate her receptive language more accurately.

For example, “chocolate on the kitchen table….” is the quickest way to find out if she knows what “kitchen table” means. And if she doesn’t know, she will next time.

These strategies are especially useful when your child cannot communicate and will not “perform.” It doesn’t matter if she knows the answer or not; if we ask her a question we will have about a seventy percent chance of being ignored. Offering an incentive improves that percentage drastically.

So Easter egg hunts are perfect. In our own home, of course (she still isn’t very good with following rules or sharing). This year we offered her back to back days of waking up and coming downstairs to an empty basket and a few eggs in plain sight to get her started. No explanation needed. Continue reading

And This Moment, Too, Will Pass

Teghan Running

In July 2012 I decided to start a blog. I knew nothing about how to do that, but I wanted to share our experiences with our daughter and autism. She was four years old at the time, and things weren’t easy. I hoped to not only find a supporting community, but to communicate a piece of our lives to our friends who we had recently moved away from.

On that first night, when I had finally gathered enough courage to publish what had been on my mind, I had no intention of sharing it. Not yet. I created a Facebook page and shared it with no one. I figured that courage would come later. It was enough that I was willing to have some stranger accidentally stumble across it.

But when I woke up the next morning I had over 200 likes on my Facebook page. Somehow, Autism Daddy had come across my blog and shared it overnight. My post “This Moment Will Pass” already had thousands of views. And it gave me the courage to share my page with friends and family. Continue reading

Problem-Solving Timelines

 

 

cincinnati

Last week I spent a few days in Cincinnati for work. The night before leaving I tried to find the best words to explain to Teghan why she wouldn’t be seeing me. These days she is pretty good at guessing what we want by the keywords she recognizes, so I stressed the words she understood- like work, “night-night,” and hotel. For a moment she was interested in us going to a hotel right that minute, but otherwise the conversation didn’t seem to have much impact. Continue reading

Social Resolutions

 

Bubble

Here we are again. It’s the last day of another year. A year feels like nothing now, but I guess overall I haven’t seen as many as it feels like I have seen. Something about starting a new cycle of anything, even something as simple as a date on the calendar, inspires people to gather up what they took from the last and make promises for the next.  Continue reading

Ornament Endurance Tests

Christimas 2008

Teghan begs for the Christmas tree and a trip to the beach all year long. She’s so used to being turned down I imagine she only asks out of habit now. The response “No Christmas tree!” actually makes her laugh. But on Thanksgiving we threw off her whole routine and finally set up the Christmas tree. Unfortunately, the beach is not in our immediate plans.

She is obsessed with ornaments. The traditional cheap ones she likes to tap her fingernails on and bounce off the floor. The glittery snowflakes she prefers to break apart and, occasionally, take a bite. She doesn’t have the fine motor skills to properly re-attach them to the branches so she just stuffs them in wherever she can. If they fall to the floor? Even better. Our tree looks pretty pathetic, but after the first day we decided it was easier this way. We could spend all day redecorating the tree in our own little OCD cycle, but that seems like poor time management. And I would hate to cut into my “eating on the couch” time.  Continue reading