If you're interested in contributing to this, I still have some topics that need to be written about so let me know! jillsmo at gmail.com
Today's contributor is my sister friend Jennie, who blogs at Anybody Want a Peanut? She was one of the first people I met when I started blogging. Love her <3
Toward the middle of December, parents everywhere begin gearing up for winter break. This break, and other times off from school, can be challenging for all families. Routines are disrupted, working parents need to take time off of work or figure out alternative childcare, and the stress of family and the holidays sets in. But for families with kids on the autism spectrum, these times can feel more like going in to battle than time off, and the recovery can be just as difficult.
I realize that all kids do well with routine. My (typical) two year old would never go to bed without one. But for many kids on the spectrum, structure is vital for getting through the day. My four year old son, Moe, can handle small changes, but these big changes in routine cause what I call the sleep death spiral. We are in one now, and it affects the whole family.
It goes something like this: Moe is not as engaged during the day when he’s not at school, so he isn’t as tired, and has a harder time falling asleep. He then wants to sleep late in the morning, which we can either allow, throwing his schedule off even more, or wake him up and endure the piranha-like wrath that endures when he’s tired and grumpy. In other words, when Moe is tired, he starts biting (and hitting and grabbing). I spent much of the last winter break dodging Moe’s sharp nails, and keeping him from hurting the dog.
It is easy to think that we should just keep Moe busier during these times. After all, isn’t that what all parents have to do when their kids are home from school? Am I just whining about having to work a little harder?
With my daughter, for example, I can bring out any number of activities to keep her busy. Where she will color with crayons or play with play-doh for long stretches, Moe eats said art supplies. He doesn’t read, doesn’t play with legos or blocks. He won’t even sit and watch TV for more than a few minutes at a time.
“Get out!” you might say. “Go to a park! Use that zoo membership you have!” While I am fortunate enough to live in a warm climate that would allow such activities, it is impossible for me to take my two children anywhere without stroller containment, since Moe will bolt at any opportunity, and I can’t chase him and leave my two year old unattended.
For working parents, camp may be an option for their children. Many local community centers, for example, offer winter and spring break camps, as does the YMCA. Some even can accommodate children with special needs. I have not, however, found any camps for children like mine: preschool age, with little to no language and requiring constant one on one attention.
Other families may choose to use time off to travel and see family. For us, this is also prohibitive. No house is Moe-proof, so he, again, requires constant attention. My family is supportive and would love to help us in any way they can. But it’s too much to ask. Fortunately, they are just as understanding when I say we can’t visit.
At home, Moe sleeps in a twin sized bed with a special tent designed to keep him from escaping in the middle of the night. The tent is collapsible and portable but wherever we went would have to have a twin sized bed. And again, Moe has difficulty sleeping and is often awake for hours in the middle of the night. A screaming four year old does not a welcome house guest make.
The transition back home and back to school is almost as challenging as the transition away, except this time the behaviors are seen at school. And a tired, dis-regulated child is not one who is able to learn. So a two week break from school could result in three or four weeks spent on behavior management, and not teaching.
Like others have said before, I am not asking for pity. This post is also not about solutions, and I won’t get into the challenge many parents take on when they try to get their insurance companies/regional centers/school districts to try to cover time off. Suffice it to say that while I should be enjoying my break now that Moe is back in school, I am already starting to panic about – and plan for - the summer.