Managing

I have four children: Sam is 16-1/2 (the 1/2 is very important to him) and has autism, epilepsy, ADHD and spinal stenosis. Jacob, 13, has ADHD. My step-daughter Ellie (although I do not generally use the word "step") is 12 and has Type I diabetes. At 14 months old, baby Laura seems to be developmentally on track despite a small delay in walking.

Because of two things - the general number of children, and the number and variety of special needs, people generally avoid asking me to do things in church or the community, saying that I have "enough on my plate" or they don't see how I do it. Meaning, keep my sanity while rearing four children, all of whom have special needs (for a toddler has special needs just because of toddlerhood). While I appreciate their consideration, it takes away the choice I have in what I can and cannot do. For I love to teach Bible studies and have people over, but oftentimes people decline, saying that I have enough to do with my children. I would appreciate the chance to decline based on my own prayer life of asking God what HE wants me to do. For if He calls me to it, He will provide the grace and the way to do it.

People ask me all the time, "How do you do it?" -- meaning, how do you manage four children with special needs, a house, a husband (who himself has special needs although they're undiagnosed), writing, and leading a small group Bible study? The key word is "manage." Sam's autism requires us to have a certain level of structure that is good for all the kids -- and us. Autism requires us to have rules in our house that are not to be broken. This means we seem more strict than most parents, but it's not just because we want to be -- we have to be more strict, for safety's sake, sanity, and to keep all the ducks in an orderly row. Every day is different -- sometimes autism is less of an issue, sometimes it's a very autistic kind of day.

On these days, you learn to be flexible within the confines of the structure. If going to the park is on the plan but Sam is having a very austisic day, maybe going to the park with all the kids should not happen on that day. Life works when we acknowledge the disabilities, plan for them (for example - always have Sam's noon time pill with us, carry a site change for Ellie's insulin pump in the first aid kit that's always in the van, and have glucose tablets for when she goes low but we can't get to food immediately), and try to live as normal a life as possible.

One of the most important things to do to manage is to accept the disability. A long time ago I stopped fighting autism and accepted that my son has this dreaded disability which can manifest itself in so many forms. Yes, we fight autism -- by enrolling him in special camps and programs and treating him with medicines, and working with his teachers -- but life is so easier to manage when we accept autism. When we accept diabetes and ADHD and a zippy crawling toddler. To deny that we're different is to deny a huge part of our children and makes life a lot harder than it needs to be.

Some things that we do at home to manage are:
1. use a chore chart with the chores spelled out for each kid. They can't argue with a dry erase board [Although, I've found, they can erase a dry erase board -- which means I use wet erase markers that foil any preemptive strikes against said dry erase board].

2. Saturday nights, all the kids get their church clothes ready and have to show them to us. This eliminates Sunday morning fights and frantic attempts to find errant shoes.

3. Lists. Lists for grocery shopping, lists for daily activities, a to-do list for Sam for daily activities like chores, etc that he can strike off has he does what's on the list -- giving him a little power and satisfaction.

4. Preparation. We have to stay one step ahead of autism. That means looking ahead logistically and seeing trouble spots, and preparing Sam ahead of the trouble spots. If he is aware of things that can go wrong, he is better apt to prepare himself. In 2007 we took all the kids to Disneyworld. We knew Sam has a thing about trash -- straw wrappers, candy bar wrappers, etc -- so we showed him that Disney does not have "trash cans" they have "refuse cans." He thought it was very cool that in the Magic Kingdom the trash -- refuse cans -- are hooked up to a central vacuum system which quietly sucks all the refuse from the cans so there is no overflowing cans to upset the Disney experience. He would volunteer to gather up our remnants and put them in the refuse containers in the hope of experiencing the stuff being sucked away underneath the Magic Kingdom.

It may seem that we give autism too much credit and change all our lives around it. Maybe -- but it sure does help us to manage life and keep us at least a little sane. Having a child with a disability means quietly grieving on a daily basis for who that child could have been. Managing it this way, after acceptance, eliminates some of the grief and allows the child to be all that he can be despite the disability.