I used to daydream with Dave about how great it would be if Teghan jumped into our bed once in a while. What would it be like if one morning Teghan got out of bed, and instead of just running back and forth in the hallway, actually came into our room to see us? Or what if one night she wanted to sleep in our bed like other small children; or maybe just sit next to us for more than ten seconds? What would that be like?
When she hurt herself, she didn’t want our comfort. She would scream and hit, and get angry over the pain- and there was nothing we could offer her. She just pushed us away.
She didn’t seem to notice when I came and went for work. Sometimes she wouldn’t even look at me. The cats at least looked up at me for a moment before resuming their naps, but Teghan would just continue with what she was doing.
She didn’t like to give hugs or kisses at all. She would oblige if requested, but often with tears. She hated it. For years there would be no snuggling at all. Years. We were simply tools to get what she wanted.
It doesn’t matter how much you know about autism, those little things will affect you. You believe in your heart that she feels what you want her to feel but just can’t express it. We knew that was true, but we still struggled to wrap our social brains around the concept. And how do you show affection to a child so unmoved by demonstrations of affection? Did any of it matter to her? It seemed to only annoy her.
I don’t know what happened, but everything is different now. One year ago I posted a video of Teghan asking for letters. In my post I was amazed at how connected she was. I remember being overjoyed at the way she maintained a back and forth for several minutes. Then it was gone. It was brand new, and there was zero consistency to it. But we were hopeful.
One year later and she is interacting with us all day, every day. She still doesn’t understand a lot of basic concepts or speech, but in her own way she is connected to us and engaging all the time. I can’t believe how different she is. It’s not obvious to most other people, but to us this past year has been life-changing. And it happened so gradually that we almost missed how incredible it was.
When Teghan wakes up in the morning, she now runs into our room and climbs under the blankets. Sometimes on weekends she will snuggle there for an hour or more. Actual snuggling. And on school days she will sit on my lap and hug me until the bus comes.
Every time she hurts herself she runs into my arms and says “ow” while placing my hand on the spot that hurts. She still gets mad about it, but she lets me calm her.
She cries when I leave the house without her. Before I get home from work she will stare out the window and say “mama home.” Can you believe that? When I pull up to the house I will always find her staring out the front window. She jumps up and down when she sees me. Of course, when I get in the house she usually drags me to the kitchen in a futile attempt to get me to give her chocolate (whether it exists there or not)- but I know she is happy I am home. She smiles and does her little happy skip back and forth.
For the past few days she has been locating my mom’s photo on our phones. She hands it to us and says, “grandma, please,” sometimes throwing in a “bye bye car” to really impress us. Her pronunciation isn’t great, but she is pairing words consistently. Mostly because of her obsession with the word “please,” which is often said with such longing that it breaks our hearts.
Teghan is now the snuggliest kid I know. She will give hugs and kisses all day. She will sit on my lap in the evenings and hold my hand, or play with my hair. Sometimes she just wraps my arms around her and buries her head into me. Or jumps behind my back to hide and request that I “crush” her. She constantly seeks us out for Teghan-style games. She tries to get me to say “no soup” and sing songs. She likes to press our feet together and play “bicycle.” She laughs whenever I say things in a joking tone of voice, even if it isn’t funny.
Last year we couldn’t have imagined such a transformation. She was five years old, and hadn’t shown any signs of real affection up to that point. I guess it’s reasonable for us to daydream of the day we might be able to have a conversation with her. She gets a little closer all the time, but we have a long way to go.
I can’t wait to read this post next November. What will have changed? Somehow the least affectionate kid became the most affectionate kid practically overnight. She also brings her own special brand of social interaction to our world, that has filled in empty spaces we didn’t even know were there. How did that happen? I don’t know. All I know is that autism is full of mystery- and sometimes even hope.