Managing Your Child’s Care Team

Alright, so we’ve now established that you are the CEO, but how does that really play out? What does that look like?

Managing Your Child's Care Team

Well, to be perfectly honest, it’s probably going to look different for everyone. Ideally, this post would come after the posts I’m planning on self care and discovery, but we don’t always have the luxury to get everything figured out before we have to just dive right into this lifestyle. It would be best for each of us to have the time and energy and resources to figure out who we are and where our strengths lie first, but best is usually unattainable.

So let’s strive for the practical instead.

If and when you can, take the time to figure yourself out a bit more (I’ll tackle some of that in upcoming posts and will link here when those are written. If I remember. Hopefully) and use that information about yourself to develop your role in managing your child’s care team down the road.

For now, just do what you can.

So let’s just throw all these tips into some kind of list form, shall we? I love lists. Especially nowadays when my brain has been fried by exhaustion, some PTSD, and probably age (memory loss starts this early, right?).

Here we go.

Your child’s care team are your consultants, not your bosses.

Here’s the thing: YOU are the only one trekking off to every single appointment and therapy session. YOU are the one talking to other parents in your community. YOU are the one devoting your time to researching your child’s condition. In the perfect world, all of your child’s doctors, therapists, teachers, etc. would all be talking to one another. They’d all be comparing notes and always be up to date on the latest research, but this is far from a perfect world.

So it’s going to be on you to see the big picture, to put all the pieces together, and decide whose advice you’re going to follow. Because sometimes one specialist wants this and another wants that. You’re the decision maker.

And this doesn’t mean you’re the expert in every field. The CEO of a company isn’t an expert in every field they’re directing, but they find team members they can trust in each of those areas. Do the same.

This really was the mindset that helped me gain the confidence to direct my daughter’s care rather than being pulled and pushed and tugged and bullied into doing what each specialist wanted.

I deeply value the opinions of the experts we turn to. I wouldn’t keep seeking their opinions if I didn’t, but I always remind myself that I’m still the one in charge.

It gives me the confidence to ask questions.

It gives me the confidence to say no.

Remember that you are a contributing member of the team.

Do you need a medical degree to be valuable to the team? Of course not. You are around your child the most. You know them the best. So, your input, your observations, even that gut instinct you have are valuable. They’re important information that shouldn’t be easily dismissed by doctors, nurses, therapists, teachers, whoever.

Don’t let anyone stay on your team that disregards what you bring to the table.

I always remind myself that I’m not just thinking outside of the box, I’m not even IN the box. I have no preconceived notions of what is possible or impossible. I can ask questions, push for answers, and not simply accept solutions because they’re standard procedure. I bring a fresh perspective and you do, too.

Don’t ever think you can’t contribute because you don’t have the right letters after your name.

Find the best (or those willing to listen to the best).

Don’t be afraid to look for the best specialists for your child. Maybe that’s someone with more experience or maybe it’s someone who knows their limitations or maybe it’s someone who is willing to hunt down the best research and specialists for advice.

Don’t be afraid to get second (or third or fourth) opinions. This is so standard and if a specialist is offended, you probably don’t want their ego on your child’s care team, anyway.

Remember that this is your job.

Dress the part. Act the part.

Especially when you are meeting a potential member of your child’s team for the first time, try to look and act more professionally. Once a relationship is established, it’s usually okay to cut yourself some slack, but those first meetings are important.

And dressing a bit more professionally will hopefully give you some extra confidence as you interact with specialists, too.

Earn their respect and make them earn yours.

Each of these specialists has likely seen their share of bad parents. They have no idea which category you fit into yet, so give them a chance to get to know you. Don’t expect their trust or respect right off the bat and make sure they know that goes both ways.

Insist they explain themselves and answer your questions. You don’t need to let them boss you around.

This isn’t about you.

You’re not here to make friends. You’re here to get your child what they need.

Find team members who will fight for your child.

This one is so very important.

When it comes down to it, YOU will not be able to make things happen. To those in authority, quite often, you are a nobody. And sometimes you’re worse than a nobody: you’re just a biased and desperate parent.

So, you need doctors, nurses, therapists, and teachers who KNOW your child, TRUST you, and have the ability and authority to get your child the care needed. We’ve had very vital times where it was the relationships we’d developed with our daughter’s care team that saved her, where her doctors fought for treatments that she needed because they knew our daughter and us.

There ya go. Six…*counting*…seven. Seven tips.

This won’t be easy. It certainly wasn’t for me. I had to remind myself of my role with every new specialist, though now it’s become much more natural.

But how you implement these tips isn’t going to look the same as everyone else. We all have different personality types and areas we feel more confident. The point of this is to change your mindset. Change how you see yourself in these interactions.

And never forget that a good CEO values the members of their team and knows their own limitations. You’re not looking to bulldoze into every appointment, bossing people around.

You’re looking to build professional relationships, give and earn respect, and push everyone on the team to do the very best they can for your child.

You’re not a dictator.

But you’re not a nobody.

You’re the CEO and you are gathering the best consultants you can find to give your child the best life they can have.

Good luck!

Managing Your Child's Care Team

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