“LuLu really needs a very structured environment,” my friend commented as we discussed Spring Break and my indecision about how much school work to pursue with LuLu during this week. She was right, but her words overwhelmed me. Just like the task overwhelms me. I’ve always been praised by others as an organized person; not quite as organized as Super Dad, mind you; but in the corporate world I was able to pull together events, meetings or projects with precision. I’m a pretty structured person.

But parenting a special needs child definitely tests your ability to provide structure in the midst of pure chaos. Take this week (the week after Spring Break) as an example. While last week we were pretty lax on school work and I allowed LuLu to enjoy the break by staying up late and rising later than usual, this week we’re supposed to be back on schedule. But on Monday we needed to take Super Dad to the doctors for a procedure, throwing up off a bit. LuLu willingly did school work in the waiting room. But that afternoon some blood in her intestinal tract threw me for another loop that landed us at the doctor’s yesterday (and off to the GI specialist today). Meanwhile, Monday night the furnace quit working, which shouldn’t be a problem in Atlanta in April, but with overnight record lows in the 20s, it’s been cold in here. Super Dad, of course, is traveling on business. Sadly, these things do seem to be more likely to happen when he’s out of town. This morning I awoke to find my internet connection not working. After an hour on the phone with our DSL provider, it was still not fixed. I hope it will be resolved in time for me to post these blogs today. More chaos, since I arise early in the morning to get my “work” done prior to launching into the school day with LuLu.

There are many days I feel like I’m “herding cats” as a friend used to say. And the frustrating thing when raising special kids is that you never know when it’s going to happen. In the corporate world, if things were going awry, you always had a way to escape (going home in the evening). If co-workers or the boss were moody, exploding or not feeling well, there were others around you to commiserate, relate, assist you. If needed technology or equipment broke, there were others more technically astute than you to fix it. And there were procedures, rules, processes already established by the corporation to follow. On the days when life was being chaotic, you could arrive at your job and just do what you were told, because the structure was already in place.
But parenting special kids is different. YOU are the corporation. YOU are the one who designs AND implements the structure. If things go awry…there’s no escape. If the kids are moody, exploding or not feeling well, you need to fix it. If something breaks, you need to fix it. If things seem chaotic, you MUST put a structure to it. How can you do that?

Here are some tips for imposing structure on a chaotic life:

1. Establish some routine that never changes. For us it’s waking at the same time every morning. I also spend ½ hour in Bible study or watching a favorite preacher early in my morning. LuLu and I walk Mudflap every afternoon. Dinner time is the same every evening as well. These are constants in our lives.
2. Prioritize the most immediate and the most important. Many things that are immediate crises (fires) are not that important. Immediate often takes precedence over important. Don’t let that happen every day. It will give you a sense of control over the chaos. For example, today the immediate crises I will tend to are the internet being down and getting LuLu to the GI specialist. The furnace will just have to wait.
3. Teach your child organizational skills. Give your child the same skills you employ. For LuLu this means we have a large chart in the classroom with all tasks for the day listed on it. She is responsible for reading the chart, getting out the assignments and checking them off when completed. This to-do list gives her structure, and comfort as to what’s expected from her each school day.
4. Build in some flexibility. Structure does not mean rigidity. Life with special kids is especially unpredictable. Expecting that the day’s schedule and agenda be done exactly as planned is a set up for disappointment, and can be a cause of great stress. Don’t set your expectations for accomplishing things too high. Know your child and your situation. Allow enough time, especially if your child has difficulties with transitions.
5. Put something “normal” on the agenda. This is the tip I have the hardest time following. I get consumed by dealing with our daily challenges and LuLu’s needs and neglect many of the necessary “normal” things until they too become a crisis. Schedule that doctor’s check up for yourself, or make doing things for other members of the family a priority over always caring for your challenged child’s needs first.
6. Give yourself a break. I mean this both literally and figuratively. Lighten up on your own expectations of yourself. You can’t control your circumstances, but you can control your reaction to them. Don’t berate yourself or feel guilty if the day doesn’t go as you had planned or if you forget to do something. (You’ll get another chance tomorrow!) And find a way to schedule a break for yourself into your days and months. Since you don’t get to leave all these challenges behind at an office each day, it’s important that you do schedule opportunities to lay it all down and recharge.