Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!

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Students, About that Walkout: Totally Do It.

Hi Students,

Thanks for taking the time to read this.  I wanted to take a minute to talk to you about the walkout scheduled for March 14th (or April 20th, depending on where you are in the country.)  I am a history teacher and mom of two girls and I’m one of many adults that will tell you to totally do it.

The walk out has to do with protesting gun violence in schools.  It’s completely fitting that you, the students, would want to do this.  After all, you’re the ones who go to school every day, the ones who have to deal with this fear, the ones who have to go through the drills and the what ifs.  What if an armed intruder comes into the school. What do you call it?  An active shooter? A code red?  Whatever you call it, or your school calls it, it’s totally wrong that it’s something you have to worry about.  You should be worrying about what college you want to go to, who you want to go to the school dance with, whether or not you want to try out for the school play.  You should not have to worry about whether or not there’s a student with a gun who’s going to shoot you in school.

This is your chance to use your bodies in a political movement. The truth of the matter is that money moves politics, and the lobbyists have all the money.   There aren’t a lot of political options open to non-voters, but one of them is peaceful protest.  It’s a protection in the First Amendment, along with freedom of speech, freedom of the press, and freedom of religion.  Freedom to peaceably assemble is right there too.  It’s your right,all of our rights as American Citizens.  Thomas Jefferson called them “unalienable rights” along with Life, Liberty, and the Pursuit of Happiness.   I’d say that not getting killed by a gun in school qualifies toward Life, Liberty, and the Pursuit of Happiness, wouldn’t you?

There are a bunch of letters out there from other teachers who are encouraging you to have a Walk Up rather than a Walk Out.  The idea is that rather than using your bodies to politically protest, you use your bodies to sit down next to the lonely kid next to you, you share a sandwich, you be a nice kid.  And I want to tell you, that’s great, but you can totally do that 179 other days of the year.  In fact, sit down the day before the walk out next to the lonely kid, share your sandwich, and invite them to the Walk Out with you.

Because here’s the thing.  This is ONE DAY.  The walk out is a movement.  It’s a way to organize.  It’s a way to be powerful both individually and part of a group.  It’s being educated about a subject, and making a decision to do something about it, at the same time as everyone else.  It’s a national movement of all teenagers who have said, “Enough.  Enough of being afraid.  Enough of choosing the right of gun owners over the lives of kids.”  And doing it all together, all at the same time, gives it more power.  So Walk Out Proudly.

You might be getting pressure by principals and teachers to not participate in the Walk Out.  They might be threatening you with disciplinary action, detention or suspension, or whatever.  Keep in mind, these are the same people who celebrate people who hid Jews during the Holocaust, who teach you about Martin Luther King, and sitting at lunch counters in Woolworth, or about suffragettes marching for Women’s right to vote.  Here’s the thing.  All of those people whom  you read about and celebrate, they were acting against the law because it was the right thing to do.  It’s called Civil Disobedience.  Why are your principals and teachers against this idea of  your civil disobedience, but celebrate the civil disobedience of historical figures?  Well, let’s just say that democracy is messy and complicated, and it’s hard for your principal and other school leaders to see the light at the end of the tunnel. Their job is to protect you and to make sure that there is order and discipline.  They’re seeing the potential risks to having a bunch of kids walk out, not the potential greatness.

So here’s what you do.  You educate yourself on why you are walking out.  You organize with your friends.  You stay respectful to the adults in your life, while staying true to yourself.  Remember, this is only 17 minutes, from 10 am to 10:17 am, after that you go back in the school and go back to work taking notes and raising your hand, eating in the cafeteria and running track.

Here’s the other thing you do.  You bring your phone.  You take lots of pictures and videos.  And you post them on all of your social media accounts.  You make this go around the world again and again and again.  You show your power as soon-to-be-voters and internet savvy consumers.

And then you do one other thing.  You write to your Members of Congress.  You write to the President.  Maybe you even send them a picture.  You say that you’re a student who Walked Out and you tell them why you walked out.  And you tell them that you’re not going away.  And that they will be voted out if they don’t change the gun laws to protect kids in schools.  Governing is just a plan for the future. If you don’t like the way your representatives are running the government, you can vote them out in favor of someone that has a better plan .  You have the power, or you will very soon.

One more thing.  I want to tell you how proud I am that you’re taking a stand and making yourself visible.  You are going to be the leaders of the world, and I’m glad to see that you’re doing it with thought and responsibility.  That’s what this country needs more of, young people who speak truth to power.  Speak your truth.

Please share this with your friends, and let me know how it goes.  I can’t wait to watch this unfold. You are Brave Fragile Warriors. Be safe and have fun.

 

 

Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

  •  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
  • Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
  • Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
  • Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
  • Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
  • Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
  • Interview key new staff members who will interact with families, like nurse managers, etc.
  • Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.