March 29th, 2015. My 44th birthday has arrived. I woke up this morning and wondered if I could have any present what would it be? The answer….to sit down and be able to have a conversation with Dayna. I was 29 when she was born and since that day the only words Dayna has used with us are either to request something in short 3-4 word sentences, or to repeat what she heard on a kids show. I would have so much to ask her if we could sit down and talk. Why does she fight us every day going to school? How does she feel about Deb and I, and Kiley and Sean? What about The Wiggles does she like so much? There would be a lot I would want to learn. There are times she is so happy, and other times she is so sad. We never know why, we often wonder what is going on in her head.
You will hear the line “If you meet one autistic child, you have met one autistic child”, meaning each situation is different. This is very true. When it comes to communication some parents have autistic children that can communicate much better than Dayna. They do so either by talking, writing or using pictures. Some parents have children that do not speak a word at all for their entire lives. It’s not necessarily better for the parents of children that can communication better than Dayna, those children may have other difficult issues that Dayna does not. For Dayna, she primarily speaks to us in brief, repeated sentences. “No school today”, or occasionally when she is getting very frustrated about going she will put together a larger sentence like “I don’t want to go to school today”. When she is hungry “What do you want to eat?” is how she asks us. And sometimes the words aren’t quite right, like “I’ll put the backpack in the laundromat” is her way of asking us to put her backpack back into our laundry room where it is kept. The frustration for us comes in that we know she has the words, that she has the ability to put some together. Every now and then we get a glimpse of what it would be like. It could be quick, but well placed communication. A direct glance over to me and a “Hi Dad” from Dayna feels amazing. The other day Deb had her outside for the bus to go to school and Dayna told her to “Shut up”. OK….not nice, but still it was a real communication that Deb got a kick out of. I don’t know if we will ever find out everything that is going on in Dayna’s head. Over time we hope that she will use more words and sentences, and we will learn new ways to help her communicate with us. Until then we will continue to try and figure out what she is trying to say, and she will continue to try and figure out how to tell us what she needs.
As it turns out Dayna gave me a great present anyway this morning. Almost every day this week Dayna has come in our room between 4 and 4:30am and woke us up. During the week, it was the ‘no school’ request over and over. Even yesterday, a Saturday morning where normally she does not come in, I received a 4am wake-up call that consisted of a loud crash. Dayna had somehow tipped her desk over, dumping out all the drawers, and sending her computer and lamp crashing down. I came running out of my room to find Dayna in the hallway saying “Turn the lights on!”. Yep, it was another night of broken sleep. But not this morning….no early morning requests, no crashes, no lights turned on. Dayna gave me the best present ever…..a full night’s sleep on my birthday!