Life Planners™ Newsletter
May 2006
by Mike and Linda Moran
Monthly advice on how to write your child's Letter of Intent,
also known as a Life Plan
Download our free sample
Letter of Intent
(All sensitive and identifying information has been changed.)
"It changes too fast."
It changes too fast
Maybe it does change very fast. Let's not sugarcoat it. If your child is still rather young, or you are still struggling with a recent diagnosis or seemingly ever-changing diagnoses, it does change very fast. It may seem like it will never stop changing. Well, I hate to say this, but it won't. It will never stop changing.
But that's no reason to throw in the towel. Instead, you need to realize that when things change the fastest, it is even more important that you write things down, not just for your Life Plan, but for your own sanity. If it's changing too fast, then you need to stay organized. You need to keep tabs on your doctors, your teachers—all of your service providers who may not keep the greatest records.
Let's face it. Nobody wants to spend all their time writing and rewriting their child's Life Plan. But think about why things are changing so much.
Is your child very young? Growing? Developing? That's good, isn't it? Why not thank God that things are changing so fast? You certainly would not want your child to develop more slowly just to reduce your paperwork. So, accept that your constant Life Plan updates are the price you pay for your child's welcome developmental spurts.
But maybe your extra work is not really a happy development. Perhaps your child is undergoing test after test in what seems like a never-ending search for a diagnosis. Or maybe there are constant seizures, medical interventions, illnesses, or other unhappy events that make you feel like you need a frequent flyer card at the emergency room. On top of all the stress and worry, the last thing you need is to keep your instructions up to date, right? Wrong.
If you are having trouble keeping up, why do you think your service providers will? Wouldn't you want to recognize that the "new" seizure medication was one that a previous doctor tried without success two years ago? Wouldn't you want to remind your child's teacher that your child's behavior problem seems similar to one that occurred before?
Your copious notes will arm you with the information you need. If it is changing too fast for you, why do you think that people who don't care as much about your child will keep up? Maybe they will have kept better records than you, but why take the chance? Even good service providers make mistakes. Make sure that you are in the position to catch them—and not by relying solely on your memory.
Now that you are (hopefully) convinced that changing circumstances are no reason to avoid updating your Life Plan, let's get to the real problem: How will you be able to do the work? How can you keep up when it does change so fast? Here are the best things to try:
- Do it wrong quickly—then fix it. Maybe you are struggling with perfectionism. Because it changes so fast, you know that whatever you write now will be wrong next month. Do it anyway. Do the best you can, but commit to fix it whenever you get better information.
- Make updating your Life Plan part of your routine. You have a disabled child, so you probably have more routines than any five people you know. Restricted diets, medication schedules, behavior modification plans, annual specialist checkups—the list of things you do by rote seems endless. You are very good at following all of these routines to help your child, so why not incorporate your Life Plan updates into your existing routines? Every time you come home from the doctor, you mark down your co-payment and keep insurance records—you can also update your Life Plan with what the doctor said. When you meet with your child's teachers and agree on a new way to handle his annoying yelling behavior, write it down. When you discover that the gluten-free diet is actually working, make a note of when you started it. Incorporate your updates into your daily workload and you will find that you capture most of the changes as they happen.
- Periodically review the entire plan. For an adult child with a static diagnosis, you can review the plan once a year, but your child's Life Plan may require more frequent review. Mark your calendar for every three months or four months or six months and just do it. Treat it like another doctor appointment or anything else you must do regularly. Read over the entire plan and make notes in the margins for anything that has changed. If you are truly short of time, just live with your plan being full of notes. If you find a few hours, you can rewrite those sections so that the plan now incorporates your notes. But remember, you are not publishing the Great American Novel—if your plan has notes in the margins but it is still easy to understand, then it is good enough.
But whatever you do, do something! Don't let another day go by without updating (or starting) your child's Life Plan. It really does change too fast for a lot of us. Just make sure that you change your Life Plan to reflect reality before it's too late.
This month's Life Plan tip:
Involve your child in her Life Plan
Obviously, some children can't be involved, such as infants or those with severe cognitive or communication delays. But most children can be involved somewhat. Ask "What are your favorite things to do?" or "Where do you want to live when you grow up?" Always be sensitive to your child's ability to consider a future without you, but do find non-threatening ways of exploring her perspective on the world.
This month's featured question:
How can I explain my child's medical condition?
No doubt about it, this is one of the hardest things to do. You have struggled to understand it yourself, and you get a little confused each time the doctor tells you something new. But don't let that stop you.
You don't have to replace the doctor or any other resources you have with your Life Plan. Just make sure that your plan lists all of the various doctors that your child has seen (with dates and phone numbers) and your best understanding of what they said. List the Web sites you've used that have been most helpful. And the books. Clip out the most informative magazine articles and attach them to your Life Plan. Remember, the best thing you can do is point your caregivers to the sources they need to learn themselves.
A thought to ponder:
"There is nothing permanent except change."—Heraclitus, pre-Socratic philosopher, 2,500 years ago
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