When Two Stories Collide

March 9, 2011

As I travel around the country, I get to meet some really interesting and wonderful people. I did a talk for the San Diego Hemophilia Association and met a man with an interesting point of view about his illness.

I noticed him when we were waiting in line to register. He was a tall, older, African-American man with a certain grace about him despite a limp and a cane. He was dressed in lots of clothes including an overcoat; uncharacteristic for mild San Diego. But it was cold and rainy that day. He had a wide, toothy smile that lit up his whole face as he heartily greeted the volunteers working the registration table.

Sitting down to eat some breakfast, he asked if he could join my daughter and I. “Of course!” I reply. After the typical pleasantries, I asked him, “So what brings you here to this conference?” “I have hemophilia and I am finally coming out of denial.” “Oh?” I ask, “What do you mean?”

And he proceeded to tell me about how he’d been meaning to come to this conference for years but just couldn’t face the fact that he had hemophilia. Finally, due to bad health, he couldn’t ignore it any longer and had decided to get support. He was tired of doing it alone.

“You see,” he explained, “I am one of seven children. And I tried to keep up with all of my brothers and sisters. I didn’t want them to see me as weak or sick so I just basically shoved the fact that I have hemophilia into the back of my mind. I did the bare minimum to take care of myself but I’ve lived a life that now I am paying for. I hope others don’t make the same mistakes.”

I explained to him that I was there to talk with parents about raising children with hemophilia and I asked if he had any wisdom to share, if there was anything he wished his parents had done differently.

“I wish they would have taught me and my siblings about my hemophilia, talked about it openly within the family. The whole family was in denial. It’s like my hemophilia didn’t exist. So I didn’t learn how to take care of myself and I didn’t learn how to cope with it well. And now I am paying the price. My life is kind of a mess right now. I am searching for answers and meaning.”

I encouraged him that sometimes we just don’t know where the turns in the road of life will take us and that by telling his story, he will help others and perhaps find meaning himself. Because we are our stories and we all have a story to tell. He seemed stunned as though the thought hadn’t occurred to him.

A tall black man and a short white gal- two hearts and two stories connecting for a moment in time. I hope that I made a difference in his life like he did in mine.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and national public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see http://www.ParentingChildrenWithHealthIssues.com.

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Turning Knowledge Into Wisdom: Being an Effective Advocate

November 27, 2010

Sue has a serious chronic medical condition and visits many different doctors each month. She is on top of her medical situation and sometimes brings in new research papers to discuss with her team. When a new doctor prescribed her a medication without explaining what and why, she gently but firmly told him, “I am happy to follow doctor’s orders as long as I understand them. When would be a good time to answer my questions?”

Sue is an advocate. She seeks accurate medical facts and information. She empowers herself with knowledge. But knowledge is only half of the story. What good is knowledge without wisdom? Wisdom is knowing how to use knowledge effectively.

Sue sees herself and her doctors as a team. She believes in a collaborative approach to her medical care. But her style is not without conflict. There have been times when busy doctors with a brusque bedside manner didn’t particularly like being “second-guessed.” But Sue has a great way about her and it’s hard not to like her. She is able to detect when she is starting to get some resistance and goes into her “Conflict Resolution Mode”:

Step 1. Show empathy and understanding for the other person’s position. “Ohhh, it looks like you are super busy today and probably don’t have time for my questions. I can understand that.”

Step 2. State your position using “AND” and “I” language: “And I can take much better care of myself if I understand the reasons behind your decisions here.”

Step 3. Suggest alternatives: “Is there a time that we could talk about this later by phone or even email? I won’t take much of your time, I promise. I just have a few basic questions about what you are suggesting. Thank you for being willing to help me out.”

Sue is a successful advocate for her healthcare because:

1. She is knowledgeable about her medical condition. She actively seeks accurate information from reliable sources.
2. She stands up for herself and isn’t afraid to be assertive.
3. She is calm and respectful even in the face of resistance or conflict.
4. She doesn’t take abrupt (some say “rude”) medical professionals personally.
5. She is not demanding or threatening.
6. She doesn’t tell others what they have to do but instead shares what her needs are.
7. She understands that having an effective approach is in her own best interest so she works hard at learning good communication skills.
8. She tries to be appreciative of the doctor’s knowledge and expertise (even if she doesn’t like the doctor as a person).
9. She understands that being an advocate is not the same as being pushy or aggressive.
10. She uses a collaborative approach to solving problems.

Sue knows that her good health is ultimately up to her and the choices she makes. And, as an effective advocate, she is prepared and empowered to make good decisions that will impact her life, and those who love her, for years to come.

*************
Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see http://www.ParentingChildrenWithHealthIssues.com.

Giving Our Children Gifts for a Lifetime: Using Tough Situations as Teachable Moments

November 19, 2010

A mom of a ten-year-old boy with cystic fibrosis (CF) shared her experience of how her son had been “interrogated,” without permission, about his medical condition by two school psychologists. They wanted very detailed information including what kinds of medications he was taking, how much, and the specifics of his medical status.

Of course this loving mother was very upset and justifiably so. Who wouldn’t be? After getting feedback from others within the CF community, she decided to go to the school administration and register a complaint. It’s worth saying that this happened in another country, not America, so our laws here might protect our children from this sort of thing. But that’s not the point of this writing.

As I ponder her story, it strikes me that she was lucky this happened. Yes, you read this right- lucky. She is lucky because now she can teach and model to her son how to:

1. Handle the situation well without being victimized by it.
2. Deal with conflict in a healthy manner.
3. Have an opportunity to experience together the challenges of life with CF that he will face out in the “real world” as an adult.

This story reminds me that as parents, it’s the “little” experiences in life that add up to shape and mold who our children ultimately become. If this loving mother simply rants, raves, and complains to everyone who will listen, it is quite possible that she will raise a child who does the same. He will become a victim of his CF.

If this mom goes into the school demanding “restitution” or threatening lawsuits, this child will begin to think he’s entitled and will learn that being demanding and threatening is how to resolve problems (good luck to his future wife and children).

And if this mother goes to the school with a curious, open, assertive (not to be confused with aggressive), and collaborative attitude, then she will give her son great gifts: wisdom, the ability to work out problems with others, and a “can-do” attitude.

Here are some examples of some things she might consider saying during the meeting with the school administrators:
• “I am sure you thought you had a good reason to interview my son about his medical condition and I’m curious about what that might be.”
• “Is there some reason that you chose not to speak with me about it first?”
• “Are there any issues with my son here at school that led you to feel the need to get his detailed medical information?”
• “In the future, I would like to know about such interviews before they occur. If you feel like you need to speak with my son privately, I am open to that as long as we discuss it first.”
• “I would like you to get my permission before you interview him in such a manner again.”
• “My son feels really uncomfortable about what happened. I’d like for us to have a discussion with him to process what happened.”

Handling these types of moments is never easy but unfortunately, life is filled with them whether children have medical issues or not. Of course having special needs of any kind increases the number and intensity of these moments.

And in these moments- as a parent of two kids with CF myself- when I am tempted to over-react, it helps me to remember the influence I have on my children and it causes me to pause. As my children see how I handle such moments, then they will learn to handle these moments for themselves. And when I handle it well, I will be giving my children gifts that will last a lifetime.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see http://www.ParentingChildrenWithHealthIssues.com.

For more Tips for CF Parents, visit Lisa’s website at http://www.TipsForCFParents.com.

How to Teach Children to Take Responsibility for Health Issues

November 27, 2009

Responsibility. Parents want their kids to take more of it and kids just don’t want it. Responsibility is kind of like that gooey, green slime kids love to play with. It oozes around in a family and can slither off in all different directions. Parents can easily slosh, slip and fall when carrying ooze that should belong to the kids. It’s pretty frustrating to slip on ooze that someone else should have scooped up! The ebb and flow of responsibility becomes very important when life and death issues are present in a child’s life.  

Both of our children have cystic fibrosis. It takes a lot of effort to keep them well. Between them, they take thirteen different types of pills each day, three inhaled medications, plus two chest physical therapy routines. In addition, they have special dietary requirements. There is plenty of responsibility that can ooze around and slither off in different directions and it can be very easy to get stuck in the muck! 
 
Our kids are very good about taking responsibility for their medical requirements but it wasn’t always this way. I became quite an expert on what not to do because I tried it all! I have also learned from other parents who are having a hard time with their older kids now. Here are some things that don’t work; do any of them sound familiar?
  • Telling a child what to do and when to do it
  • Sheltering them from the realities of their medical condition
  • Taking on all of the responsibility
  • Showing anger and frustration when mistakes are made
  • Showering your child with praise and/or bribes 
Talk about frustration and sloshing around in the ooze of responsibility! So, what can you do to help your children take responsibility for their healthcare requirements? Here are some important concepts that I’ve learned while working with Foster W. Cline, MD, a child psychiatrist and co-founder of Love and Logic®:

1.        Rather than telling a child what to do and when to do it, use choices and questions. Kids need to feel like they have some control over their bodies just like we adults do. What happens when we say to a kid: “Come here and take your medicine!”? Power struggle, arguing and complaining, right? Instead, try this: “Are you planning to do your breathing treatment before or after soccer practice?” or “Would you like to take your pills with apple juice or grape juice?” or “When will you do your physical therapy today?” Give choices as much as possible in all areas of life including homework, chores and medical requirements. The more you share control, the less you’ll fight over it.

2.        Teach your children early on about their medical condition and be honest about the consequences of non-compliance. One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner. The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don’t show fear and angst, then the child won’t become fearful. Children pick up on our cues. Usually we don’t know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it’s good enough for parents! Some good questions to ask are:
 
 “How much do you know about your illness?”
 “How worried are you?”
 “How are you handling it?”
  “What can I do to make things easier?”
   “Is there anything more you need to know?”
 
3.        Wise parents lovingly lay the responsibility for compliance on their child in small, age- appropriate increments as early as possible. When we use choices and allow our children to make their own decisions early on, they will grow in responsibility naturally. Jacob, at age six, stunned me by starting up his Vest (a mechanical chest physical therapy device) right out of the blue because he “wanted to get it done before his friend came over.” I didn’t even realize he knew how to work the thing! Since he was four, we have given him many choices around when, where and how he does his CPT.

4.        Be sad when your child makes bad choices, not mad. When we give our children appropriate responsibility to handle their health care requirements, then we need to be prepared for mistakes. Kids are human. They will forget to take their medication at lunch. However, the way we respond to the mistake can make all the difference in whether or not our child learns from it. Responding with sadness is always more effective than anger. There have been times when our children have decided to put off their breathing treatments until later in the day but then forgot. Our response has been along the lines of, “Oh sweetheart, what a bummer. We won’t be going out to dinner (at your favorite restaurant) now because we won’t have enough time to do both.”
 
5.        Allow your child to experience the consequences of their mistakes when the price tag is small. Love and Logic parents raise kids who understand that their actions have consequences – both good and bad -which will affect the quality of their lives. Allow your children to experience the natural consequences of their non-life or limb threatening choices instead of rescuing them. It’s better for a child to learn about safe driving by crashing a tricycle than cracking up the family car at age sixteen! There’s no better teacher than the school of hard knocks. Start early; while the price tag for mistakes is much lower.

6.        It is more effective to give encouragement than praise. When parents say things like “I’ll bet you’re really proud of yourself” rather than “I am proud of you” then they child give their child the glory when good decisions are made. Praise is really an external judgment of the child’s performance and can backfire if a child is resistant, doesn’t feel like being judged, or doesn’t particularly like the parent at the moment. And, of course, false praise almost always leads to disrespect. Questions are again very useful. Asking a child, “How do you always manage to remember your medication?” is much more effective than “Good job on remembering your medication.”
 
My last, and perhaps most important, thought for you is around parental self-care. Take good care of yourself. This includes taking the responsibility for meeting your own physical, mental, emotional and spiritual needs. When we take good care of ourselves, then our children learn from our example and are more likely to take good care of themselves, too. I know it isn’t easy but here is the good news: The more responsibility our children take for themselves, the less we have to do for them. Best wishes for a healthy, happy family!  
                                                      ***
 
Lisa C. Greene is the co-author, with Foster W. Cline, MD, of the book Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs. Lisa is the mother of two children with cystic fibrosis and a parent educator. Visit www.HappyHeartFamilies.com for more of Lisa’s articles or www.ParentingChildrenWithHealthIssues.com.

Balancing Reality with Hope

June 9, 2009

Balancing Reality with Hope      By Lisa C. Greene

One parent says, “I don’t want the teachers to treat my kid like he’s different so I don’t want to tell them that his life-expectancy is only 37 years.”

Another parent says, “I’ve told the teachers about her illness but they just don’t get it! Just because she doesn’t look sick doesn’t mean her special needs should be ignored.”

This is such a tough issue for families living with a child with cystic fibrosis and other serious chronic illnesses. How do we best communicate with others about our child’s special needs?

As the mom of two kids with CF, I have faced this situation many times over the years. Due to my hubby’s employment, we have moved several times since our son, who is now ten, was born. With each move, I have to start the learning curve all over again: how do I tell people about CF and should I? It’s not exactly the kind of thing one brings up during the Sunday potluck: “Oh, by the way. Did I mention that both of my kids have a life-shortening genetic disease?”

When we moved to CA, I was attending a neighborhood mom’s group for almost a year and hadn’t yet mentioned “the CF factor.” It was a social group with the kids and the appropriate opportunity just never came up. One day I was giving my daughter enzymes before a snack and a mom caught me. By then, she was comfortable enough to ask me, “What are those for?” And I spilled the beans. She was stunned and said, “Wow. I had no idea that your kids have cystic fibrosis.” And I remember thinking, “Well, I don’t exactly have a banner on my forehead that says ‘My kids have CF.’ How could you possibly know?” Of course I didn’t say that- it was just a (rather snarky) thought that popped into my head. But I realized right then that having healthy-looking kids can be a double edged sword. The blessing is that we are treated normally but the ‘un-blessing’ is that we might not be taken seriously.

I have really struggled at times with this issue. What, when and how much do I tell people? I have been burned by forthright honesty. I once shared our story during a church small group meeting. Afterwards, a man came up and said, “Thanks for sharing your story. There was a guy in our office who had CF. He was a great worker; one of our very best. And then he died.” I can’t tell you the thoughts that popped into my head on that one… Luckily, I kept my mouth shut. But, I can tell you that after I had some time to cool off, I realized he was just trying to help. In his own (albeit insensitive) way, he was trying to tell me that this person had lived a full, rich, productive life and was missed.

For me, I have found that hope-filled honesty is generally the best policy. There have certainly been times when it wasn’t appropriate for me to launch into the whole CF scenario but I guess the ability to feel your way through those situations takes time and experience. Being able to read the cues of others during an emotionally charged conversation isn’t always easy. It takes some preparation and practice.

My “CF Explanation” is now down to a few key sentences that include: “CF is a genetic disease that primarily affects the lungs with thick mucous that causes lung infections. The average life-expectancy is 37 years and climbing rapidly due to great medical advances and dedicated fundraisers. So there is a lot of hope that my kids will outlive me. However, their outcome depends on many things including how well they take care of themselves because there is a lot of medical care that they have to do every day.” And then I explain their daily care; that is if their eyes haven’t glazed over by now- you know “the look”.

If it is a teacher, a coach or a person who is intimately involved in helping me to keep the kids healthy, then I tell them that their partnership can make a big difference in how well my kids live and how long they will live. And then I coach them on my child’s unique needs including the need to be treated like everyone else. I let them know what I need, not what they have to do. There’s a big difference here. Being aggressive is telling others what they have to do which is seldom effective unless you’re the boss or the president. Being assertive is telling others what I need.

Aggressive: You need to move my kid away from that other kid who is coughing in class.
Assertive: I would appreciate it if you could move Jacob away from the kid who is sick so he doesn’t get sick, too.

Aggressive: You need to figure out why my kid is coughing all the time.
Assertive: I am so concerned about Kasey’s cough. Can you please help me figure out what we can do about it?

Human nature says that when one demands, the other resists so aggression and demands don’t usually get us very far. But sharing what we need and phrasing it politely will generally result in cooperation. Note that this is true with our kids and spouses, too.

I have found that as long as I remain calm, confident, and open, most people are generally pretty accepting and supportive. Some are compassionate and helpful. And others are downright amazing. And with the ones who are jerks (yes, there are those, too), I do my best to either ignore them or go around them like to a school counselor or principal. But the best defense against people who don’t take my kids’ health seriously is to make sure my kids do. The more responsibility my kids can take for their own well-being, the less I have to rely on other adults.

It’s a tough balance: over-protection versus denial. And, like everything else, there are extreme ends of the spectrum. Some people want to treat my kids like a wounded bird which is the last thing I want. And others ignore the reality which is equally unhealthy. But sometimes, it’s hard enough for me to find balance, so how can I expect others to?

The best way I can help my kids is to educate people in a matter-of-fact, kind way without taking things personally (and I know it is personal so I’m not saying it’s easy). What helps me to keep an even keel in those moments of frustration is the knowledge that I am setting the example for my kids and how they will handle the same issues in the years to come. Plus, I don’t want teachers or doctors to take out their frustration with me on my child.

The really great news about cystic fibrosis is that there is a lot of hope. Yes, some die young and, yes, our children suffer. And there are also people who are over 70 years old with CF; I know of two personally. Remember, median life-expectancy is calculated by figuring the middle number where there is an equal number of people above and below. But this newest generation of people with CF has the benefit of breakthrough medical advances that the numbers don’t clearly reflect. I wonder what the life-expectancy would be if we could remove the population of people who didn’t have the benefits of Tobi, Pulmozyme, hypertonic saline, The Vest, etc. And then we have newborn screening now which makes a huge difference. If we could factor in these things, I’ll bet the median life-expectancy would be much higher than 37.

Generally speaking, there is no doubt that the life-expectancy is shifting upward rapidly and, I believe, there is nothing but bright, shining hope on the horizon for people who live with CF and those of us who love them.

*****
Lisa C. Greene has been helping parents raise healthy, happy families for over seven years. She is an author, parent coach, international speaker and the mother of two children with cystic fibrosis. With Foster Cline MD, Lisa co-authored the award winning book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs.” Lisa donates proceeds from her writing to help in the fight for a cure for cystic fibrosis.

Since 2004, Lisa has been working with Dr. Cline, a well-known child psychiatrist and co-founder of Love and Logic, to create a new program for parenting kids with health issues based on the popular Love and Logic tools and concepts. For more information, see http://www.parentingchildrenwithhealthissues.com and see http://www.happyheartfamilies.com for Lisa’s “Tips for CF Parents.”

CF Mom: Super Sleuth Extraordinaire

May 14, 2009

My 8 year old daughter has cystic fibrosis and takes about 10 to 12 different prescriptions each day to keep things working right in her little body. We just started two new medications- an antibiotic and a steroid to try and combat the chronic cough she has been unable to shake since last December.

I carefully queried the doctors and pharmacist about drug interactions, possible side effects, etc. Sounds like it should be fine so I gave her the first doses of both drugs last night before bed. She woke up this morning complaining of pain in her thighs, knees and ankles; pain so bad it was hard for her to sit in the chair and eat breakfast.

I grab the paperwork from the pharmacist- you know the ones with microscopic fine print about drug reactions. Nothing mentioned in there about muscle pain. But everything else I read scared me to half to death. “Honey, if you get a rash or a bad tummy ache or blood in your pee, be sure to tell mommy right away.” “Okay,” she says. Hmm. A search on the internet doesn’t tell me anything new. “Honey, if you have really dark colored poo or you start to throw up, be sure to tell mommy.” “Okay,” she says.

We decide to wait for a couple of hours to see what happens; she can call me from school if it gets worse. I give her ibuprofen to help her feel better. We finish eating breakfast and head off for school.

As we drive, my son starts talking about the field and track event coming up and how he and his buddies are practicing by running around the building. Then, my daughter pipes up with, “Yeah, we had to run around that great big building FOUR TIMES yesterday in PE!” Me: “What??????” Her: “Yeah, we were really tired and our legs were hurting!” :-0

So much for being a pharmaceutical super sleuth. My daughter simply has a case of “sore muscles.” Go figure…

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Lisa Greene, BS CCP

Lisa C. Greene has been helping parents raise healthy, happy families since 2002. She is a certified parent coach, parent educator, and mother of two children with cystic fibrosis.  She is also the co-author with Foster Cline MD of the award-winning book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs.”  Visit Lisa’s website at www.HappyHeartFamilies.com

Keeping Hope Alive in Tough Times

January 19, 2009

Dear Friends,

As 2009 begins, many of us are filled with both fear and hope on many fronts. Here is an article which will give you some tips on how to stay positive even when things seem hopeless. Best wishes to you all for happy, healthy, hope-filled families in 2009 and beyond. Lisa Greene

Keeping Hope Alive During Tough Times
by Lisa C. Greene

I pull into the carpool lane to pick my kids up from school and am yet again touched by the sight of a seeing-eye dog with a bright pink lunch pail hanging from her mouth as she trots alongside a young girl in a wheelchair.

And then there is the computer-generated voice that says “Amen!” at just the right moment during church. I am inspired by the young family in the front row as they minister to the physical and spiritual needs of their disabled son who is barely visible amidst the medical equipment that surrounds him. It would be so easy not to go to church but there they are, week after week.

How do these families and others like them keep their hope alive in the face of such daunting challenges?

I am no stranger to hope- or hopelessness for that matter. Both of our children were born with cystic fibrosis. CF is a genetic disease that causes the mucous in the lungs to become thick and sticky which causes lung infections, scar tissue and eventual lung failure. The median life-expectancy is currently about 37 years of age and rapidly climbing due to great advances in medical technology.

There is great hope for the future of those living with cystic fibrosis and I am generally optimistic about my children’s future. But I know of a beautiful young lady who recently died from the disease at the tender age of twelve. And the many pills, medical treatments and hospital visits that my two children endure serve as a bleak reminder of our race against time with this progressive disease.

Sometimes the icy fingers of hopelessness hide in the shadows around my heart, waiting for a beat to falter so they can enter. But I don’t let hopelessness sneak in. I can’t. My children depend on me. Not only am I their caregiver, but also their role model. They will pick up on my cues as they learn to navigate their own way through a lifetime filled with the trials that their illness will impose upon them. If I model hope, they will be hopeful. If I model despair, then they will be hopeless. So, how do we keep our hope alive even when we don’t feel very hopeful?

Throughout my “CF journey” I have had many teachers encourage me, inspire me and lead the way. And I have noticed they all have one thing in common: gratitude.

A little research on gratitude turned up some interesting things. It is not clear why some people are naturally more positive than others. Perhaps it’s genetic. But it is clear that purposely focusing on what we are thankful for, instead of what we are upset about, will help us feel more optimistic about the future as well as more loving, forgiving, joyful, healthy and, of course, hopeful in the present.

Anabel Stenzel, co-author with twin sister Isabel of the book “The Power of Two,” says:

“Because of my CF, I have received many gifts: resilience, closeness with loved ones, the amazing people one meets in the CF community, and the maturity and depth that living with a chronic and life-threatening disease can bring. Despite living with progressive lung disease that required me to have a lung transplant at age 28, I have learned, loved, seen, heard, eaten, walked, talked, touched, thanked, hoped and dreamed in my lifetime. And I have no regrets.”

Ana and Isa are living examples of counting our blessings one by one. The good news is that an attitude of gratitude is a choice. Anyone can be more thankful with a little awareness and effort. Here’s how:

1. Pay attention to your thoughts. Make the decision to replace negative thoughts with positive ones. For example, say “I am thankful for having medical insurance” rather than “What a hassle this insurance company is!” Repeat over and over as necessary!

2. Stay in the present. Focusing on the challenges of the past or on what might happen in the future can rob your joy today. What are you grateful for right now? Clean clothes? A loving family? Food on the table? Start with the simple things in life that we often take for granted.

3. Take five minutes each day to meditate on one or two things you are thankful for. What blessings did your day hold? A meaningful moment with a loved one? A beautiful sunset? A word of encouragement given or received? A job well done?

4. Begin a “gratitude journal.” Write down one different thing that you are thankful for each day for three weeks. Notice how much happier you feel. Then, keep going.

5. Share your blessings each day with your family- especially your children. Ask them what their blessings were, too. An attitude of gratitude is contagious!

Sometimes it can be difficult to muster up the will to count our blessings. Here are some tips for keeping our hope alive during those especially hard times:

Keep your expectations reasonable. Hoping for a cure can keep us going but can be devastating when it doesn’t happen. Miracles can happen! And it’s also important to stay grounded in reality. Having faith with reasonable expectations helps us stay balanced.

Take the time to grieve. Bad things happen. And when they do, we understandably respond with shock, anger and despair. The way to acceptance is through these emotions by allowing ourselves the time and space to grieve. The key is to find a balance and not get stuck. Elise Free, mom of a two-year-old girl with CF nicknamed “Froggy” explains:

“There are levels to my own grief: One day I feel elation that Froggy lives in a time of progressive medicine, and in the next second, sorrow that we were so unlucky to be the one in being a carrier of a defective gene, passing on something dreadful to our child.

And then there is the warm wash of gratefulness leading me to appreciate every moment with a monumental love powered by the knowledge that life is fragile and our time together is measured in breaths.

We have been given an opportunity: to see life in a dark light, a constant balance of pain and peace, hope and devastation, sorrow and joy. And maybe that is the purpose of life, to find the balance, to accept the reality, but live in the hope.”

Faith filled folks have more hope! When times are really tough, we need something to hold on to- some sort of anchor in the storm. We can find comfort in knowing that there is something bigger than us in all of this; that there is some meaning and purpose for it all- even if we don’t know what that might be.

So, how do we keep our hope alive? Marla, mom of sweet baby Emma (who has cystic fibrosis), sums this up for us perfectly: “I look at my daughter’s face. Seeing her beautiful smile gives me hope.”

Originally published in PARENTGUIDE, December 2008. Reprinted with permission.

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Lisa C. Greene is the mom of two kids with cystic fibrosis, a parent educator and co-author with Foster Cline MD of the book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Other Special Needs.” For information, free audio and articles, visit http://www.ParentingChildrenWithHealthIssues.com.

Kids Can Be So Cruel: Coping with Bullying and Teasing

September 4, 2008

With school starting up, I thought you might find this article helpful. Enjoy! Lisa

Kids Can Be So Cruel: 
Helping Children Cope with Bullying and Teasing
By Lisa C. Greene and Foster W. Cline, MD 

Jessica is generally a happy kid but she didn’t look very sunny when she got home from school. So, her mom asked, “How was your day at school sweetheart?”
 
Jessica’s answer was slow, with some reluctance: “Well, mom, I don’t know…. not so great….
 
She seemed to need a little encouragement to continue. “So….?”
 
“Susie and I were standing at my locker when Josh walked up and said, “Hey Susie. Why are you hanging out with a loser like Jessica? She’s just gonna die on ya from cystic fibrosis!”
 
Stunned, this mother grabbed the edge of the counter just to contain herself. Kids these days can be so cruel! Fighting to contain her anger, she asked, “So, what did you do?”
 
“Well, I didn’t do anything but Susie kicked him in the shins!”
 
There are bullies in abundance. There isn’t a kid alive who hasn’t experienced a brush with a bully on the playgrounds of life. But, sometimes bullying passes the point of no return. Hearing many variations on this same story over and over again from families of children with cystic fibrosis (CF), I (Lisa) realize such moments are inevitable. Every parent of a child with a serious medical issue or disability lives with the knowledge that their children will face such unexpected and thoughtless remarks. At some point, it is likely that my own two children with CF will face such cruelty at the hands of their peers. 
 
As parents, we carefully construct explanations about our child’s diseases and deliver them tactfully and hopefully. But that can all come crashing down in a heap at the hands of a thoughtless and bullying peer. So I, as all parents with children who live with chronic illnesses, must decide: Is it perhaps best for me to purposefully tell my children the hard truth- that yes, they indeed might die young from CF (or diabetes, etc.) – before I leave it up to chance at the hands of a thoughtless bully or even a well-meaning teacher?
 
Jessica’s story brings up a number of related issues:
 
– When and how do we talk about the possible results of a potentially life-threatening illness?
– How do we handle bullying? 
 
Unfortunately, the answers are not easy and individual situations vary; thus generalizations may not helpful in all individual cases.
 
Factors that influence how parents talk about a possible early death with their child include the child’s age; the child’s maturity; the parents’ ability to cope with their own emotions when communicating about the subject; the severity of the illness and the immenence of death.
 
Factors that influence how parents talk about bullying with their child include many of the very same factors: the child’s age, the severity of the bullying or threats, the maturity of the child, and the parents’ ability to cope thoughtfully about the subject. For instance, when parents understandably become overwrought, frightened or rageful about their child being bullied, their emotions are contagious and generally not helpful for the child. A better response is to express curiosity, interest, and allow the child to at least have the opportunity to vent, cope, and problem solve. Certainly if the situation makes coping or problem solving impossible, the parents haven’t closed the door to stepping in, taking charge, reporting and rescuing if these actions are called for.
 
In any case, whether we are talking about bullying or communicating about a possibly fatal outcome, if parents can cope with the issue, it is better that their child hears the facts and options from parents than from an uncaring peer or thoughtless remark at school.Unfortunately, due to limited space here, we can’t cover both issues in detail so we’ll focus on dealing with bullying. But first we’ll give you some basic guidelines to follow when discussing difficult issues in general with your children as taken from the book “Parenting Children with Health Issues”:  

 
1. Before you give answers, ask yourself: whose needs are you addressing yours or your child’s?
 
2. Consider whether you are giving more information than the child wants or needs to hear. 
 
3. Be open to your children talking with you about anything and everything. 
 
4. When you are not sure how to give the answer, ask more questions.
 
5. Recognize that sometimes your child is trying to “protect” you.
 
6. Show acceptance even when you can’t show approval.   

7. Every answer dealing with life-and-death issues should leave room for hope.
 
When our children face bullying, there are two broad paths the parents may follow:
Path One: Protecting the child  
Path Two: Helping the child to cope and respond effectively
 
When a child is simply teased, Path Two is often the best option. If a child is threatened with physical harm, Path One is probably necessary. Certainly such paths are not mutually exclusive. Love and Logic principles emphasize that the more the child is able to respond effectively to the problem him or herself, the more resilient and capable the child becomes. It is understandable when parents naturally become upset, show sorrow, become indignant and talk about ways of rescuing the child when bullying occurs. The problem is that these responses make it easier for the child to take the reciprocal response of victim. This can sometimes be avoided by discussion of options, problem solving and encouragement.
 
For instance, concerning teasing by a bully and using the Love and Logic metaphors, a Helicopter Parent might make the following comments:
 
“How awful.”
“I’ll phone the school (or the parent, teacher, coach, etc).”
“Something should be done about that kid.”
 
Comments such as these imply:
“You are fragile.”
“You can’t make it without me.”
“You need my protection.”
“There’s nothing you can do about it, you’re helpless.”
“Something like this can scar you for a long time.”
 
A Drill Sergeant Parent might come through as follows:
 
“You need to fight back.”
“Stop your whining about this.”
“Maybe I’ll go down and knock some sense into those kids.”
“What you need to do next time is…”
 
These types of comments imply:
“You can’t think so I have to think for you.”
“You aren’t capable of making it in life.”
“You can’t handle this without my help.”
“You need me to tell you what to do.”
 
A Consultant Parent tends to explore and ask questions:
 
“Why are they picking on you?”
“Do you have ideas about how they are feeling that makes ‘em talk like this?”
“Who do you think you might be able to talk to at school about this?”
“What are the ways you can handle it?”
“When the kids say those things about you, do you believe them or do you think they have their own problems?”
“Would you like to hear how other kids might handle something like this?”
“Do you have some thoughts about how I could be most helpful?”
 
These types of responses imply:
“If anyone can handle a situation like this, it’s you.”
“You are capable!”
“You make good decisions and solve your own problems well.”
“I’m here for you if you decide that you want my help.”
 
Note that none of the Consultant Parent responses preclude the parent from stepping in and rescuing the child or taking charge of confronting the situation if need be. But if the child can be encouraged to handle the problem, the child’s self image and coping skills are increased.
 
So putting bullying and death together, understanding the truth that an ounce of prevention is worth a pound of cure, and taking a child’s maturity and knowledge into account, a parent might start a conversation with a second or third grader by wondering:
 
“As you know, cystic fibrosis is a serious disease that leads some people to die earlier than others. How would you handle it, I wonder, if some kid ever was mean and said something like, “I don’t have to listen to you, ‘cause you’re going to die early anyway?” Then thoughtfully explore the child’s answers, letting the child take the lead.
 
Kids can be cruel but parents can take advantage of these unfortunate moments to build their child’s character, self-esteem and coping skills.
 
Click here to check out the video clip of Dr. Cline demonstrating how to talk with a teen about handling teasing and bullying about her medical issues! 
 
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From the book Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline, M.D and Lisa C. Greene.
Dr. Cline is a child psychiatrist, author, and co-founder of Love and Logic. Lisa is the mother of two children with cystic fibrosis and a parent educator. For free audio, articles and other resources, visit www.ParentingChildrenWithHealthIssues.com.
 

 

School Daze: Teaching My Kids’ Classmates About Their Illness

February 1, 2008


I have to admit I was a little worried about how the talk at school would go. Even though I am well-trained in communicating with kids, I am still a mom first. And moms worry! It’s part of our DNA.

The kids had just started a new school and the teachers requested that I talk to their classmates about their medical issues. Both of our children have cystic fibrosis. They need to take medication (pancreatic enzymes) to help their food digest properly. Of course their classmates have noticed Jacob and Kasey chucking down a handful of pills at lunchtime and have barraged my children- and their teachers- with questions.

I spent a couple of hours preparing for the talk. I wanted it to be fun and informative- sort of like a health education class. Kids need visuals so I found a diagram of the digestive system that could be colored. Jacob and Kasey helped me gather some show-and-tell items: A nebulizer cup, an albuteral puffer, and opened up pancreatic enzymes placed in a baggie (kids always want to know “what’s inside”). We decided together what to talk about and I gave them lots of choices: Do you want to talk or have me do it? Will you be with me or at your desk? Kasey (in first grade) decided to have me do all the talking but she would be my helper. Jacob (third grade) decided to do the talking about pancreatic enzymes and have me teach about the rest. We were prepared and the kids were excited. Kasey’s little girlfriends were buzzing with anticipation. They were all so curious about CF.

I was nervous. I do plenty of public speaking but I was more nervous about speaking in front of twenty first and third graders than 200 adults! These are my babies! And this is “life-and-death” stuff in front of their classmates. What if I blew it? One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The “correct” answer is, “The odds are yes since the average life expectancy is only 37 at this time.” But that’s not something a 7-year-old needs to know in such stark terms- including my own! I wasn’t exactly sure how I would answer this question and I wasn’t sure if my kids knew this reality. So, taking my cues from Dr. Foster Cline, I decided to ask them.

Preparing for the worst, I casually (but with heart pounding) asked my son, “So Jacob. What would you say if someone at school asked you if you can die from CF?” He thought for a moment. Then he said, “Well, I would say people do die from CF. But we are more likely to live longer when we take good care of our bodies.” Wow!! The answer of my dreams! He knows the reality of the situation but also understands the role he plays in taking responsibility and understands the long-term impact of his healthcare decisions.

That massively encouraged me. This Love and Logic stuff really works!  Later on, I asked Kasey the same thing. She said, “Well you can but if you eat healthy and take all your medicine then maybe not.” Bingo! Two for two. Both kids have an understanding of the reality of cystic fibrosis and are hopeful about positive outcomes based on their personal choices about self-care. I have to say I was a little surprised. I didn’t think that children this young could have such a mature attitude and understanding of such a heavy situation.

The talks went well that day. All of the children were curious, open and delightful. We had a lot of fun together. Kasey even demonstrated chucking down four (big) enzymes in one swallow just before lunch. The kids couldn’t have been more amazed if it were a flaming sword!

And no one even asked the dreaded question. Go figure.                                      

                                                                                 *****************************
     This was my very first blog ever! I hope you liked it. I look forward to reading your school stories, too.  Have you ever done a talk like this and how did it work out?
    
Some of the Love and Logic parenting tools I used in this situation were: Using choices, asking questions instead of giving all the answers, showing curiosity and interest instead of worry and concern, and guiding my children to solve their own problems.     
     There are several pages discussing how to handle school issues in the book “Parenting Children with Health Issues” by Foster Cline, MD and Lisa Greene
 See www.ParentingChildrenWithHealthIssues.com under “Ask Dr. Cline” and “Articles” for more writing about these parenting tools. Happy Parenting! Lisa

  

 

 

 

 

 

Hello world!

February 1, 2008

Greetings!
I am the mother of two children with cystic fibrosis (www.cff.org) which is a genetic disease that primarily affects the lungs and digestive sytem. There is alot of care involved and, as you can imagine, alot of emotional / behavioral challenges day to day. As the co-author with Foster Cline MD of a new Love and Logic book (Parenting Children  with Health Issues), I will share my experiences and insights with others who are raising kids with special needs.

I hope that my writing gives you some new insights into living daily with children who have chronic illnesses and other medical  conditions. I’m looking forward to getting to know you, too!

Best wishes for healthy, happy families.
Lisa G.
www.ParentingChildrenWithHealthIssues.com