It is a word we in the United States have heard a lot (too much, really) over the past several months. And there are many who are looking forward to the changes resulting from the outcome of our recent elections.
But for a person on the autism spectrum, change is a very scary word. Many people with autism crave routine - my daughter Helena is a perfect example. When she was in 1st grade, she had a teacher who led a very unstructured classroom. With the constant changes and lack of strict routine, Helena faltered. Her behavior in school that year was not too good, nor were her academics. Since then, we have had her placed with teachers who have more routine in their classrooms, and not only has Helena's behavior improved.
Even simple changes affect Helena, like asking her to get dressed before she eats breakfast (when normally she does the opposite). She will stammer, and cross her arms, and start worrying if she will have to do this all the time ("Does this mean I have to always get dressed before I eat breakfast?"). Or if, like last night, we cannot sit in the hot tub like we normally do. ("Does this mean we will never sit in the hot tub ever again?").
So you can imagine what last week was like for us - a week of change.
The New Ride
On Tuesday, we traded in our minivan (and a old pickup truck we had recently purchased) for a 2006 Ford F150 Supercab truck. The dealer allowed us to pick up the kids from school in the truck as part of our test drive. Suffice to say, Helena was not amused - "Wh-wh-where's the van? I cannot get into the truck! I can't open the door!" After we purchased the truck, it took her a couple of days before she got used to the idea of the truck.
The Piano Lesson
Wednesday night. We had to drop off the older pickup to complete our deal for the new truck. And, as with most dealings with auto dealerships, this one took far longer than it should have. And it meant that Helena would be about 15 minutes late for her 5:30 piano lesson. No problem, really. I called the piano teacher and she was fine with Helena being late. But it was a big problem for Helena. All the way there she fretted about being late. When we got there, she ran up the steps to the house faster than she ever had before. Julia and I did what we normally do while Helena is at piano - we went over to the public library and read stories until it was time to pick Helena up. We arrived back to get Helena just before 6:15, and as we walked in Helena was getting up and heading out to the car. The teacher told us that Helena was really focused for the first half her lesson, but when the clock read 6:00 (the time her lesson is normally over) Helena began to worry why we weren't there to pick her up, and it affected the last half of her lesson to the point were they stopped a few minutes early.
Our Family Tragedy
The worst change for us came Thursday, when Valerie called me in tears to let me know that one of our puppies passed away.
Phelan was a beautiful Alaskan Malamute - only 11 months old. When we got him, we knew he had a heart murmur, but the breeder said he had dogs with worse murmurs that have lived a long time. We thought we would get more time with him - we were wrong. Apparently he was barking excitedly at the dogs behind us when he had a seizure and his heart gave out.
Five days later, and it is still difficult to write about...
We took the body to the vet before the kids came home from school so they wouldn't have to see him. When they came home, Valerie told them what happened. Their reactions were interesting:
Olivia drew a picture of Phelan alive and Phelan dead, and then she cried.
Nicholas, tough boy that he is, cried. And then he said that since he feels so bad, he should get an extra large snack.
And then there was Helena. Helena asked questions about Phelan and how he died. Then she began to fret about her own heart:
"Is my heart okay?"
"What will happen if I get too excited?"
"What if this happens to me?"
"What will happen when I die?"
It took us a while to calm her down and assure her that she is okay, and that nothing like this is going to happen to her.
Last Thursday night, totally unrelated to the death of Phelan (except maybe in the eyes of God), we adopted two new kittens. They are beautiful white kittens, so similar in appearance that we can't tell them apart, nor have we given them names yet. (it's even heard to tell if they are boys or girls - we think one of each). Two new additions means more change - the first of which is that Helena has to give up her bathroom for awhile until they are adjusted to living with us (and with our two older cats). At first Helena was not amused:
"Why do they have to stay there?"
"Will I ever get my bathroom back?"
"Will I be able to sleep at night?" (the bathroom is across the hall from her bedroom, and she likes to keep the bathroom light on at night.)
But, 5 days in, and Helena has really taken to the kittens. She is always the first one to take them out of the bathroom, and she tries to play with them more than the other three. She is a little rough holding them, but she gets better at it every day. I think part of this is because they remind her of her Webkinz white cat, Princess, which is one of Helena's constant companions.
One thing we have learned on our journey with autism is that gradual changes can be handled quite easily. When Helena was transitioning from second grade to third grade, there were a lot of changes for her - not only new teachers, but a new school building, a new aide, and a new case manager. But Helena had time to prepare for these, and the transitions went quite smoothly. It's those sudden, out of the blue changes, like those we had last week, that are the most troublesome. These kinds of changes usually led to nasty tantrums in the past. The tantrums still happen, but not nearly as frequently. And I admire Helena for the introspective questions she keep asking.
My little girl, now 9 years old.