Counting Life's Unexpected Blessings

Isn't it interesting to look back over our lives and see where the twists and turns of the unexpected change the course of it?  Life just doesn't always work out as planned. Yet, I would have never discovered my purpose if it weren't for my two children being born with cystic fibrosis. It's amazing what adversity can bring when you give life a chance.

It all started thirteen years ago when the words: "I am sorry but your son has cystic fibrosis" became etched in my heart.  At the time, in the depth of my shock, fear and grief, I had no idea that this experience would propel me to become an author, public speaker and advocate for children living with chronic illness.

I have never been one to seek publicity or a spotlight. In fact, public speaking, like most people, was one of my very least favorite things to do. But, through the course of having two kids with CF and needing to learn how to parent them effectively (their very lives depend on it), I am now a public speaker and writer who shares what I've learned through years of study, research, and personal experience.  

I love what I do. Not because of the spotlight, which I am still somewhat uncomfortable being in at times, but because of the help and hope that I am able to offer others as they travel down their own path of raising a child with medical issues.

Even though the road is hard at times, we can all take comfort in the fact that unexpected challenges in life can bring us unexpected blessings if we are willing partners in this journey called "Life".

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”  For free audio, articles and other resources, visit www.ParentingChildrenWithHealthIssues.com. 

CF PARENTS: Register for Lisa's upcoming teleclass called "Winning with CF" starting on February 1, 2012. For information and registration, visit www.WinningWithCF.com.

Self Destruction: When medical professionals find it difficult to keep their oath

Every month, we receive at least one question from a parent or professional that has to do with a patient or loved one making self-destructive decisions. Certainly this is one of the most frustrating situations for a medical professional. When a client or patient insists on making unhealthy decisions that definitely shorten life or decrease functioning, a medical professional feels unable to complete the oath to preserve life. But, we don’t take an oath to preserve life…. We take an oath to do our best and do no harm!

Children and Responsibility: Teach your children take control of their health

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.

Shares How to Teach Kids Responsibility: The Five Essential E’s: ENCOURAGEMENT! Part 5 of 5

This blog is the last in our five-part series about how to teach children to be responsible. The Five Essential E's form the foundation of effective parenting and include Example, Experience, Empathy, Expectations, and Encouragement. This week, we'll discuss Encouragement.

Help for the Holidays: Tips for Staying Sane and Safe

The holidays can be a time of great joy and stress especially when you have a child at home with special medical needs. A little planning ahead can help make the holidays go smoothly.  

Shares How to Teach Kids Responsibility: The Five Essential E’s! Part 4 of 5: EXPECTATIONS

Booker T. Washington said, "Few things can help an individual more than to place responsibility on him, and to let him know that you trust him." This is the power of Expectations which is the Fourth E in our five-part blog series on The Five Essential E's of Raising Responsible Kids. If you are just starting this series, make sure to go back and catch up on the last three E's: Example, Experience, and Empathy.

Shares How to Teach Kids Responsibility: The Five Essential E’s! Part 3 of 5: EMPATHY

    

     This blog is the third in a five-part series about raising responsible children. Last week we went over the importance of Experience and how it plays a role in these five steps. We hope you are able to follow along each week and put each of these steps into practice in your day-to-day life. 

Shares How to Teach Kids Responsibility: The Five Essential E’s! Part 2 of 5: EXPERIENCE

This blog is the second in a five-part series about raising responsible children. As a reminder, Love and Logic® teaches us to use five easily understood, practical, and effective skill sets - The Five Essential E's: Example, Experience, Empathy, Expectations, and Encouragement.  Last week we went over the importance of Example and how it plays a role in these five steps. We hope you are able to follow along each week and put each of these steps into play as we move on. 

Shares How to Teach Kids Responsibility: The Five Essential E’s! Part 1 of 5: Example

This week we proudly announced the release of our long-awaited DVD. After pouring everything we have into this disc, we are now able to celebrate our grand release and share this with all of you. In revel of this exciting event, we are hosting this free blog series on the Five Essential E's to Raising Responsible Children. This blog series is filled with information normally taught in our classes and seminars, as well as in our DVD. We hope you will find some light in this information and can apply these techniques with your children at home. Please follow our blog by subscribing to the RSS feed or by email (in the right column) to get updated on future series posts!

Cystic Fibrosis Food Struggles: How do you get your children to eat enough?

A mother recently contacted us about getting her 19 month old daughter with cystic fibrosis to raise her calorie intake.

Photo by PhotoStock

Question: Are your CFer's picky eaters? My daughter who is almost 19 months has cystic fibrosis but the only problem she has is that she doesn’t eat well. So, we have to give her Pediasure to make sure she is getting enough calories. I wish that she would eat better but she doesn’t so the Pediasure is necessary for the time being. And I am tired of being viewed as the lazy parent who doesn’t want to make her child eat. If this is something you have experienced, how have you handled it? – NE

Once a Parent, Always a Parent: When Adult Children with Chronic Illness Make Bad Life Choices

A mom writes in to us and shares her story about her adult daughter who has diabetes.

Question: My husband and I are struggling with our now 22 year old daughter who has had type 1 diabetes since age six. Your book was recommended to me. I wish we'd had this information years ago. I can now see where we played right into the hostile dependent lifestyle by trying so hard to make her feel normal. I feel like a failure. I recognize that she is falling prey to "victimization," seems to think we are her biggest enemies who are only seeking to cause her unhappiness, and is overly dependent on relationships with the wrong type of young men. She is so "confused," she can't seem to separate good intentions from bad. Please direct me how to help her or what to do. Thank you so much. Your book opened my eyes to the problem, and I'm praying it's not too late. - CT

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Survival Skills for Taking Young Children to the Medical Clinic

Photo by PhotoStock

It was about 12:30pm. I had been at the hospital in the specialty clinic now for nearly three hours with two young children, parked in a small room with an exam table and one chair. The kids were bouncing off the walls and I was ready to go out of my mind.

Did the doctor REALLY think I could absorb what she was saying to me? I could not understand half the words she was using. This "CF-thing" was still all so new to me. Yet, my two babies' lives depended on me. Sigh. I'd better get my act together. As my son melted down and my daughter started hanging on me, I really did not feel like parent of the year.

Key Tips for Staying on Track with Medications

These tips were circulating on a couple of cystic fibrosis (CF) message boards and I thought they were  excellent so wanted to share them with you.

These tips are good for not only us parents, but also important things to teach our kids, too. I am sharing them with my 11 and 13 year olds who both have CF. We are working on getting them ready to manage their own clinic visits. My 13 year old will probably be talking alone with the doctors in about a year. This is part of the "transition process" which is preparing our kids for the real world including that of managing their illness on their own. We'll be writing more about this in the weeks to come.

For kids, I especially like the tip about taping a pill to the medication list so that it can be easily identified. I noticed that, during clinic, my kids sometimes struggle a little with the different names of the drugs (especially when there are brand names plus generic names) but can readily identify what they look like. This will help them learn what the different meds are. They both take about 15 different meds each day including supplements so this is no small thing! We are also working on memorizing the dosages.

Dr. Lorraine J. Gudas and Dr. Mark S. Lachs offered these key tips on how to stay on track with your medications and steer clear of unsafe drug interactions at New York-Presbyterian/Weill Cornell Medical Center's 29th Annual Women's Health Symposium:

• Keep a list of your medications with you at all times.
• Make sure to include brand AND generic names as well as dosages and frequency. Include all vitamins and supplements on the list.
• Share the list with every health care provider you come in contact with, whether or not he or she suggests new medicines or medicine changes.
• Never mix medications in the same bottle even if traveling; taping an actual pill to your medication list can help you identify which medicine is which.
• When you hear about a new drug or a health tip, ask yourself: Is this based on a clinical trial, an observational study, or only personal endorsements?
• Don't make health decisions on the basis of observational studies. They are interesting to think about, but they don't prove anything.
• If you are thinking of buying a supplement or drug, ask your doctor's opinion. Don't take them on the basis of personal testimony.

Dr. Lorraine J. Gudas is chairman and Revlon Pharmaceutical Professor of Pharmacology and Toxicology of the Department of Pharmacology at Weill Cornell Medical College, and Dr. Mark S. Lachs is director of geriatrics at NewYork-Presbyterian Healthcare System and author of "Treat Me, Not My Age."

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

Turning Knowledge into Wisdom: Being an Effective Advocate

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, however 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 also able to detect when she is starting to get some resistance and goes into her "Conflict Resolution Mode", following these three steps:

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. 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.

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

Helping Children Through Difficult Medical Procedures at Home

As some of you may know, Dr. Foster Cline and I (Lisa Greene) have an "Ask Dr. Cline Q&A" section on our website. Here we have parents submit their questions for "real life" advice on both every day ordeals and out-of-no-where experiences. Below we discuss an issue with a concerned grandparent on the struggle of medical treatment adherence.

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Question: My 7-year-old granddaughter had an appendicostomy about a month and a half ago. We are challenged with the protocol each night that requires inserting a tube into the belly button and using a feeding bag enema, solution is inserted and she sits for one hour to produce a bowel movement.  This procedure will allow her colon to shrink to normal size and she will hopefully, someday be able to have normal function. This should take anywhere from 4mos to 2yrs. I can't even imagine the long road ahead.

My question is: she fights us tooth and nail each night, takes three people to hold her down for a 10 second procedure to insert the tube. The rest of the protocol goes smoothly. We have tried empathy, rewards, and have exhausted all avenues. Any suggestions? She is very smart and knows all about this and understands, but still puts up a violent fight.  Any help would be greatly appreciated. Thanks so much.

Some Things are Harder than the Birds and the Bees: Talking About My Child's Medical Condition with Schoolmates

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.

My 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 also made a plate of brownies and grapes (to eat) to help teach about how kids with CF have different nutritional needs than most of the population.
 

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 honest “grown up” answer is, “It’s possible unless there is a cure since the median life expectancy is 37 at this time.” But that’s not something a class full of seven and nine-year-olds needs to know. I wasn’t exactly sure how I would answer this question and I wasn’t sure if my kids really understood this reality even though we had discussed it before when they asked the very same question years earlier. 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 asks 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 for his healthcare. Plus he understands the long-term impact of his healthcare decisions. 

That massively encouraged me. 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 and they loved eating the brownies and grapes for snack. Kasey even demonstrated how she could chuck down four pills in one swallow. The kids couldn’t have been more amazed if it were a flaming sword!

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

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Click here to listen to the audio recording of Lisa teaching her daughter's class about CF.

Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com

Back to School Days with Special Medical Needs: Tips for Good Communication with Teachers and School Staff

Communicating well is a critical skill that many of us simply weren't born with. The good news is that communication skills can be easily learned.

When a child has special medical needs, effective communication skills are especially important. Here are some tips for starting the school year out right for your child and teachers alike.

1. Communicate upfront about your child's needs. In the first two blogs in our "Back to SchoolDays" series, we discussed how to initiate health care plans, 504 Plans and IEPs.

Before school starts, initiate a discussion about your child's needs with school staff. Be sure to document everything in writing, especially agreements that are made.

2. Request, don't demand. Some people go into a meeting with school staff with a long list of demands and an attitude that says, "Do it or else." We call this the Drill Sergeant approach. The approach you take will set the tone for both the current meeting and perhaps your relationship with the school for several years.

There is an art to being an effective advocate for your child; it takes a bit of finesse. You want to come through as firm but not demanding; friendly and cooperative but not a pushover; and as a team player. It can be a fine line at times.

It helps me to remember to "be assertive but not aggressive" and there's a big difference. Being aggressive is telling others what they have to do and is seldom effective. Being assertive is telling others what we need.

Aggressive: You need to move my kid away from that other kid who is coughing.

Assertive: I would appreciate it if you could move my son away from the kid who is coughing so he doesn’t get sick. 

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

Most teachers are eager to do what's right for your child within reason when asked nicely. Ask, discuss, negotiate and problem-solve.

3. Be aware of how your parenting style will affect your child at school. The  relationship between children, parents, teachers and school administrators is a very dynamic one. If you are hovering over your child like a turbo charged helicopter at school, it will affect your reputation and relationships with staff. This may also "trickle down" to your child in the classroom both with teachers and the other kids.

As unfair as it seems, teachers do form opinions about their students and, like all human beings, prefer some over others. Parents are definitely a part of this equation. It's human nature to go the extra mile for someone that you like. So, be likable. 

4. Be a problem-solver, not a finger pointer. When things go wrong, it's easy to get upset and blame teachers and classmates instead of looking at the role our child might have played in causing the problem. Remember, there are always two sides to every story.

When there is a problem at school, parents are best advised to use the very same collaborative problem solving skills they use with their kids as a Consultant Parent. Foster Cline, MD gives us the attitudes for Consultant Parents:

• Use Choices, not Demands
• Are Sad for, Not Mad at
• Are Curious, not Blaming
• Are Empathetic, not Excusing
• Are Consequential, not Punitive
• Are Caring, but not Rescuing

Read more about parenting styles in our booklet called "Parenting Children with Health Issues and Other Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids" by Foster W. Cline and Lisa C. Greene.

With a handful of effective communication skills, parents and teachers can be excellent partners in doing what is best for our children. This goes for the parent/doctor relationship as well.

 

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with FosterCline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”   For more information, visit www.ParentingChildrenWithHealthIssues.com