GET READY FOR YOUR VISIT
You’ll share health records but you also want them to know your child. Make a list of things you want to tell them and also what you want to ask.
BOOK A TIME THAT WORKS
Ask for an appointment time that will be best for your child.
CONNECT WITH THE DOCTOR’S OFFICE
Find out how they do things, who your contact will be, how to get in touch.
MEET THE TEAM
If you can, drop by to meet the people and ask their advice about your first visit.
ASK A FRIEND ALONG
A second person can help in many ways while you’re there.
BRING A FAVORITE TOY OR GAME
It’s a great time to have something your kid loves with you.
MAKE NOTES
It may not always be needed but it can be a big help afterwards.
ASK QUESTIONS
Try to keep it short, but now is a good time to speak up.
REVIEW NOTES
Write down the questions you forgot to ask or answers you don’t understand.
PLAN FOR NEXT TIME
Every visit should help make the next one easier.
THE WAY WE GET HEALTHCARE IS CHANGING
The phrase ‘Managed care’ can be scary when you have a child who needs more support than most. But we all need a system that is effective and affordable for the long haul and it’s helpful to know how care management works and why it matters.
In the US we overpay for healthcare, and as more of us live with challenges the future must be affordable.
‘Fee for service’ means more treatment, medicine, etc.
Care is centered on hospitals
One in five Americans lives with a disability
It’s time to focus on wellness, prevention and healthy lifestyles and on the person as well as the problem.
Eating good food matters to everyone
Care is about what we do everyday
Prevention is part of health promotion
Managed care puts the patient at the center of a coordinated system that uses data to improve outcomes.
Healthcare is shaped for each individual
The providers are all connected
The goal is knowing what works best
PEOPLE ARE DIFFERENT
It’s helpful to know that what was once called ‘personalized medicine’ is now known as ‘Precision medicine’. It suggests that better care—more precise and effective—starts with an understanding of the individual involved. That understanding comes from taking everything into account, from genetics and medical history to environment and personal circumstances.
Read MoreAs parents of complicated kids, most of us could go on about that topic for hours! We know how dumb it is to assume you can understand a special needs kid by their diagnosis. Not every parent has heard the jokey line ‘If you’ve seen one kid with autism you’ve seen one kid with autism’ but we all get what it means. It is time to get personal in the way we care for and support children with special needs for the same reason cancer care is becoming more individualized.
A DIAGNOSIS IS A LABEL
It can get tiring explaining your child’s specific issues and watching doctors or nurses reading up on the condition they have been diagnosed with. Still, we understand why it matters.
Read MoreBut when you find yourself with a caregiver too focused on the details to connect with your child, feel free to speak up. You didn’t bring a problem in to be fixed—that’s a person, with a name, feelings and a personality.
We know that a one-size-fits-all approach is all wrong, for many reasons. We also want our children to be treated like individuals, whatever their challenges and shortcomings. And that, no surprise, turns out to be the way to more effective care.
In the precision care model, a diagnosis – even when it is really helpful—is one way to understand the person.
A LABEL IS A SHORTCUT
The more we learn about the brain, body and environment, the more obvious that seems.
Read MoreNot long ago people used language to describe different people with different conditions in terms that can sound crude today. Older people with declining mental functioning were called ‘senile’ and people mentally affected in various ways by trauma or disease were referred to as ‘brain damaged’.
The word ‘cancer’ itself was feared when we didn’t yet appreciate the specifics. As we know more, we stop using catch all labels that don’t tell us very much.
No one with a medical condition laughs off their diagnosis, because what it tells us is important. What we parents need to know from the day our kids are diagnosed is how much it may not tell us about our child. As individualized care becomes the standard for everyone, we will get used to the idea that a diagnosis is just one piece of the puzzle, important but only part of what we need to know.
Some parents get concerned when they don’t have a diagnosis for their child. And some children do much better as soon as their challenges are connected to a particular cause or syndrome. But it is important to know that the label may not be very helpful. A diagnosis like ‘Pervasive Developmental Delay’ is still used and still uninformative. And of course parents who are told that their child is on the autism spectrum are often warned that this term is used with very, very different kids.
No one with a medical condition laughs off their diagnosis, because what it tells us is important. But as individualized care becomes the standard for everyone, we will get used to the idea that a diagnosis is just one piece of the puzzle.
PEOPLE CHANGE
One of the problems with putting people in a category is that they may not stay in it.
Read MoreWe have learned that it can be foolish to predict how any particular kid will be in five or ten years. Individuals with challenges often grow and change over time—especially when they get the support and encouragement they need– in ways that can surprise parents and experts alike. Language like ‘arrested development’ suggested that a child with challenges was frozen in some way, unable to grow and learn. That way of thinking has reached its sell-by date, because we now know better and see how many thrive in different ways despite all kinds of obstacles.
Precision care is based on the simple idea that understanding each person as an individual is vital, particularly when we are talking about children with diagnoses that are not always helpful.
EVERY KID IS ON THEIR OWN CURVE
You need to know when your child is lagging behind others of the same age, but you need to know it’s not all that matters.
Read MoreIt can be very discouraging when your kid is not only behind other kids but isn’t catching up. But it’s not foolish to celebrate when our child does something new that is a true breakthrough for them. Perhaps other kids her age are reading books to themselves, but she just brought a book over for the first time, sat on your lap and listened attentively as you read it from cover to cover. A child’s progress—on their own curve—may be just as important as the milestone they aren’t reaching with their peers.
Many, many parents would sleep better at night if they could just stop thinking about milestones and stop measuring and comparing their child’s progress with others. Of course, that is not a great idea because it is so important to get extra supports to kids who need them as early as possible. That means it’s important to get kids at risk tested, which brings us back to milestones and comparisons.
The precision care approach doesn’t make comparisons with others unnecessary, but it is about focusing on the individual, with all their particular strengths and challenges.
A PARENT’S GUIDE
There are things we should do to help our families stay healthy, and when you have a kid with challenges it’s a great time to actually start! The truth is that the most important changes we should all make are based on common sense. New research keeps on showing us that some old-fashioned ideas were right all along: when our grandparents told their kids to go outside and play, wouldn’t let them eat between meals and made them go to sleep early on school nights, they were more scientific than they knew.
There is plenty we parents can’t control, but here are some things we can do to help our kids and the whole family.
EATING
The writer Michael Pollan offers wonderfully simple advice: Eat food. Not too much. Mostly plants.
Read MoreEasy to say, not so easy to live up to. Eat food reminds us that much of what is sold in supermarkets and stores is heavily processed and has lots of chemicals, and added salt and sugar: not food, exactly. Not too much can be hard to get used to, but people with a disability are much more likely to be heavy.
The third piece—Mostly plants— is more work because it takes time and to make plant-based meals, and it can be an effort to kids to love vegetables and fruit as much as they like processed foods, sodas and snacks. It may sound old fashioned to suggest you avoid most foods that come from a factory , but it’s still good advice.
SLEEPING
There is a saying that if anyone in the house is over-tired, the whole family has a sleep problem.
Read MoreMost parents go through times—with a young baby or a kid not feeling well, when they are up nights and just not getting enough sleep. But many who care for an unusually complex child go for months and months—and sometimes many years—never getting on top of things. That, of course, just makes every problem seem worse than it is and can make daily life for the family difficult.
Don’t believe everyone who tells you that their children always sleep through the night. Almost every parent gives up sleep for their kids at some stage. If there is something obvious affecting your child’s sleep, the doctor may suggest you wait it out. But when you have a kid who is not sleeping well, don’t just try to smile through it or tough it out. See a doctor and find out what is causing it and what you can do to deal with your kid’s sleep issues. You’ll be helping the whole.
MOVING
It can be difficult or impossible for some people to get around without help. Unfortunately, most of us—millions and millions of Americans—act as if we do too.
Read MoreMany parents desperately wish they had the power to make their kids happy and healthy, which, of course, isn’t always possible. But just moving more really does helps in both those departments. There is more and more research that shows this is not just something doctors and fitness trainers like to nag us about. Studies show that just walking a little more every day helps people who are aging feel better and simply standing up instead of sitting seems to have a positive effect on our brains. Some people remember when people were kept in bed for a while after an operation or told to do as little as possible when they had a back problem. Now more and more people in many different situations are given the same advice: move.
To be realistic, a kid who loves sports and activities like swimming and bike riding doesn’t need much encouragement. Children with challenges often have a more difficult time than most participating in team sports, and skills that come naturally to others may not be so easy for some. But remember that you don’t need to train a champion athlete. Find ways to make it easy to be active, start small and find what gets your kid moving in ways they enjoy.
RELAXING
Stress is a little like pain.
Read MoreWe can’t see it or know exactly how it affects others, but we definitely know when its there and we do a lot better when it’s not. When your child is having a tough day and everything feels difficult, even the idea of ‘managing’ stress can seem silly. But even if there are good reason for a kid to be upset—like challenges that simply don’t go away—there are ways to make a hard time a little easier. No, taking a deep breath won’t solve a problem, but learning simple breathing exercises can definitely make a big difference.
We all know how helpless you can feel trying to comfort a child when you don’t know what is upsetting them. But we know our own kids better every day, and once you understand why they are unhappy you don’t have to feel helpless at all. There are ways of helping, and yes, that does include learning how to stay calm yourself. The good news is that really simple things, like basic yoga exercises or a favorite game can make a big difference.
CONNECTING
We all need to have other people in our lives to be happy and healthy.
Read MoreBut a disability is isolating and can sometimes make it difficult to be with friends every day. Here is the good news: it seems that what really makes the difference is connection. Looking after a pet or having a screen time visit, saying hi to a neighbor or calling a grandparent can all make a huge difference.
Once we might have thought that all this is just about feelings but a long way from affecting our health, but now research studies tell us we were wrong. Of course, once we might also have focused more on the disability than the everyday health of the child, but that was a mistake in all sorts of ways. Disabilities can be connected to medical challenges, but kids who need a doctor’s care also rely on a healthy lifestyle. In fact, living with a disability makes it much more important to be as healthy as possible, and that starts at home.
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