tag:blogger.com,1999:blog-21060773887630662362024-03-05T09:29:39.866-08:00Lisa Greene's BlogLisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-2106077388763066236.post-18602595117157986492013-06-21T08:18:00.002-07:002013-06-21T08:24:06.342-07:00Update, New Blog Location, and "I Wonder..." <br />
It's been awhile since I have updated this blog. But that doesn't mean I haven't been writing. I have been busy with my master's degree in Family Life Education so I've been doing <em>alot</em> of writing for that. I graduate in December, 2013 so YAY!! <br />
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I have also been blogging somewhat regularly on my other blog for <i>Parenting Children with Health Issues </i>at <a href="http://blog.pcwhi.com/">http://blog.pcwhi.com/</a>. Visit me over there.
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Here is a little something I just wrote and posted on Facebook. I received many responses from others who feel the same way at times. It's so hard because I try to be positive and grateful for all of the many good things that we have. And I am VERY grateful for our kids' relatively good health and so much more that I have to be thankful for. There are certainly others in many walks of life that are suffering and have it so much worse. I recognize this. And yet, it is so human, and so healthy, so allow ourselves the space to grieve at times. The key is to accept it and move through it, not ignoring the feelings nor getting stuck there. Not that I do either perfectly by any means but I am getting better at this with practice. ;-) Thank you to all who responded with words of understanding and encouragement. Here's my post:<br />
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Just returning from the year end slide show, I wrote this (below). Many of you can relate to this, I know, as you also have kids with CF (or other medical conditions). I am sort of in a blue mood today. One of those days where I'd rather stay home with a blankie over my head. Big transitions like this sometimes bum me out. My daughter is going into Jr Hi and my son into High School. I am so very happy for them and proud. Yet there is a part of me that is afraid. I think I am grieving that they have CF today. <br />
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<strong>I Wonder...</strong>
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As I sit and watch the school slideshow, I see all the happy, smiling faces of children ready for summer and excited to move on to the next school year. I see their proud, beaming parents with cameras aimed and ready. And I can't help but wonder:
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What must it be like to not have to fight for each breath your child takes? <br />
What must it be like to not spend hours a day on medical treatments just to stay alive?
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What must it be like to not have to take thirty plus pills every day?
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What must it be like to not worry about every cold that comes along and if it will land your child in the hospital?
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What must it be like to dream about what the future holds and not wonder whether or not your child has a future? <br />
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As grateful as I am for the many blessings we have and the hope of a cure that is so near, I can't help but wonder....
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Lisa C. Greene is an author, public speaker, and mom of two with cystic fibrosis. Visit www.lisacgreene.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-20394597427247238202012-01-29T11:43:00.001-08:002012-01-29T11:43:57.622-08:00Staying Grounded in Reality Laced with HopeI am working on my master’s degree in Family Life Education. As I learn new things about families, parenting, and raising children with health issues, I’ll share them with you. <br /><br />In our textbook, “The Expanded family Life Cycle” by McGoldrick, Carter and Garcia-Preto, there was a section that talked about families lacking a time perspective when having problems. “They tend to magnify the present moment and become overwhelmed and immobilized by intense feelings. Or they become fixated on a moment from the past or the future that they dread or long for. They lose awareness that life means motion from the past into the future with family relationships continually transforming.” <br /><br />Having worked with families dealing with a child’s chronic illness, and in fact experiencing this myself, I really resonated with this statement. The newly diagnosed stage is overwhelming and shocking, bringing on the stages of grief. Interesting new research suggests parents also experience post traumatic stress disorder symptoms in varying degrees. Many parents (and other extended family members, of course) become overwhelmed and immobilized for a time at least. But some can be overwhelmed to the point of denial about the diagnosis (especially with newborn screening where the child’s illness might not be so obvious yet) and refusal (or inability) to care properly for the child’s medical needs. <br /><br />It’s interesting to note, in the context of the Family Life Cycle, that extended family members can have very unhealthy responses to the diagnosis that set into motion “negative processes” including serious family dysfunction- even in families that were operating relatively well prior to the diagnosis. <br /><br />As the newly diagnosed stage “wears off” and family members redefine and accept their “new normal” (see “Welcome to Holland” by Emily Perl Kingsley), I think we (and I am speaking for myself here but see it in many others) can become fixated on a moment from the past- whether it’s the diagnosis moment especially if traumatic or perhaps even look with longing to a simpler time before the child was affected by the illness. <br /><br />Or, we can become fixated on a future we dread or long for. For me, having two children with cystic fibrosis (CF), a life-shortening illness (median life expectancy of 40), I have to work very hard at staying grounded and balanced in reality laced with hope. <br /><br />I can too easily become fixated on the “not-so-bright future” of my children’s possible death or progression of their disease. This fear manifests itself in very tangible ways. Parents of children with CF- and all other serious medical issues- tend to be highly over-protective or, as I call it, turbo charged helicopters. This impacts and retards the normal social and emotional development of the child. See the movie “The Secret Garden” for an example of this. <br /><br />Or, I can become too fixated in the hope of a cure or new treatments that will prolong life and delay progression. When such things don’t come quickly enough, it’s easy to lose hope. I have seen this happen often within the CF community and experienced a great letdown myself when a new drug in trial did not have the positive affects that we all had hoped for. <br /><br />It takes conscious awareness and diligence to stay in a “healthy” place. And if I am in a healthy place, my children will be as well for I am their greatest teacher and role model. This is why I am so passionate about educating this population of families. And myself. :-) <br /> <br />*************<br />Lisa C. Greene is a national public speaker, writer, certified parent coach, and mother of two children with cystic fibrosis. 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, see www.ParentingChildrenWithHealthIssues.com. <br /><br />For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-19966994364686163792011-11-19T20:06:00.000-08:002011-11-19T20:41:27.253-08:00Wishes Do Come True....Wishes Do Come True.... <br />by Lisa C. Greene<br /><br />For years, my two children have been dreaming about their wishes. And, finally, in the space of about thirty days, both had their wishes come true! Let me explain. <br /><br />Both of our children have cystic fibrosis, a life-shortening genetic disease that primarily affects the lungs (visit CFF.org for details). They knew that people with serious medical conditions could "make-a-wish" and it would be granted. Over the years, they have dreamed about trips to fun places, buying crazy things, meeting Barney, Sponge Bob, Hannah Montana, and the list goes on. <br /><br />Just knowing that they had a wish has helped them cope over the years. I would hear comments like, "Mommy, having CF is hard but at least I get my wish someday." My eyes would fill with tears and I'd think, "Yes, thank heavens we have a wish to help you, and me, look on the bright side of all of this." <br /><br />The kids work very hard at staying as healthy as possible given their medical conditions. They do about two hours a day of breathing treatments and chest physical therapy. They take around sixteen medications and various supplements between them. And that's when they are "healthy"! The possibility of a two week hospitalization for IV antiobiotics due to a lung infection is an ever-present threat for both kids. So, the idea of being treated really special for a couple of days was appealing to all of us. <br /><br />I really wanted the kids to have their wish when they were old enough to remember it. And I also wanted their wish to be something that I couldn't do for them. Yes, Disney is cool but Grandma lives in Florida so we visited there a lot on our own as a family. And trips to fun places, cruises, and shopping sprees were all things that I could do for them if I saved my pennies and planned well. <br /><br />So, over the years, I encouraged them to think about famous people they might want to meet. That, I couldn't do for them even by saving my pennies. I encouraged them to think of meeting movie stars, famous singers, even the President! The kids had so much fun dreaming about who they would meet someday. <br /><br />Fads would come and go; Hannah, Justin, and Sponge Bob all came and went. I never said, "No, that's not a good wish" but I did let them know that they should sit with it for a couple of months before they really decided. Inevitably, they would change their minds. <br /><br />When Jacob turned 12, he decided that he was ready for his wish. Of course, Kasey (age 10) was not to be left out, so she was ready for her wish as well. We filled out the proper forms and paperwork including doctor's signatures verifying the life-shortening nature of CF and sent it off with great anticipation. Imagine my surprise when I received..... a reject letter!! My children were "too healthy" to have a wish. And, I heard rumors that CF was being taken off of the "wish" list because people with CF were living longer and there was the possibility of a cure around the corner. <br /><br />Now, as a Mom, I was in a real quandary. My children have a life-shortening illness with the life-expectancy being 39 years of age. Yes, they are doing well right now but CF is progressive and that could change at any time, quickly. And all of their lives, my children had been dreaming of, and getting hope from, their wishes. On the other hand, how could I be sad about the fact that my children were not "imminently dying" as the paperwork said? <br /><br />I had to deliver the good/bad news to my kids. "Good news: you are not dying. Bad news: you've been rejected for your wish because you are not dying." <br /><br />I certainly couldn't begrudge the wish foundation who rejected us. They are a very fine charity who does wonderful work. I totally understood where they were coming from; we just weren't within their "scope of work." But yet, here I was, with two children with CF, who really needed a little hope; a bright spot. <br /><br />Enter "Kids Wish Network." I did some research online and found a wonderful organization that grants wishes to children with life-threatening illnesses but doesn't require them to be "imminently terminal". They are dedicated to "infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations." The kids they serve have "faced some incredible challenges in their brief lives, and are in desperate need of hope to get through their difficult times. It is our promise to fulfill and touch these little hearts that deserve some much needed comfort and joy."<br /><br />Yup, that described my children to a tee. As a mom, I am very grateful to Kids Wish Network and our wish coordinator, Jill Atchison, for making our wishes come true. Within about six months of completing the paperwork, both of our kid's wishes were granted. And they were over-the-top, better than expected, and dreams of a lifetime. Of course, I'll tell you all about their wishes very soon. :-) <br /><br />**********<br />Lisa C. Greene is an author, public speaker, certified parent coach, and the mother of two children with cystic fibrosis. With Foster Cline MD, Lisa co-authored the award winning Love and Logic® 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. For more information, see www.parentingchildrenwithhealthissues.com<br />Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-63153956006671618252011-09-13T18:09:00.001-07:002011-09-13T18:09:52.989-07:00Back to School Days with Special Medical Needs: Tips for Good Communication with Teachers and School StaffCommunicating 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. <br /><br />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. <br /><br />1. Communicate upfront about your child's needs. In the first two blogs in our "Back to School Days" 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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Aggressive: You need to move my kid away from that other kid who is coughing.<br />Assertive: I would appreciate it if you could move my son away from the kid who is coughing so he doesn’t get sick. <br /><br />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.<br /><br />Most teachers are eager to do what's right for your child within reason when asked nicely. Ask, discuss, negotiate and problem-solve.<br /><br />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. <br /><br />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. <br /><br />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. <br /><br />When there is a problem at school, parents are best advised to use the very same collaborative problem solving skills as they use with their kids as a Consultant Parent. Foster Cline, MD gives us the attitudes for Consultant Parents: <br /><br />• Use Choices, not Demands<br />• Are Sad for, Not Mad at <br />• Are Curious, not Blaming <br />• Are Empathetic, not Excusing<br />• Are Consequential, not Punitive<br />• Are Caring, but not Rescuing<br /><br />Read more about parenting styles in our booklet called "Parenting Children with Health Issues and Other Special Needs: Love and Logic Essentials for Raising Happier, Healthy Kids" by Cline and Greene. Available at www.amazon.com and www.loveandlogic.com. <br /><br />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. <br /><br />*********<br />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.comLisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-35625143570770829232011-08-31T09:36:00.000-07:002011-09-13T18:13:43.396-07:00Back to School Days with Special Medical Needs: Getting Your Child's Needs Met with IEP and 504 PlansThis blog is the second in our "Back to School Daze" series and is a continuation of our discussion about effective communication with teachers and school staff. This week we'll look at IEP and 504 Plans which are federal regulations put in place to guarantee an education for children with special needs (which includes medical issues). <br /><br />IEP and 504 Plans are two separate plans with distinct requirements although there can be some overlap between the two. Each plan creates a legal document which outlines your child's specific needs and accommodations while at school. Parents and schools generally work together to create the plan for the child. <br /><br />Although the subject is complex and confusing, it's important for you to be aware of the basics. Taking medication at school, meeting dietary requirements, attendance, schoolwork, the ability to perform at grade level, exceptions to grading policies, and perhaps even safety issues (like accommodations for allergies), may all be affected by your awareness of your child's rights. <br /><br />Busy, budget-strapped school systems and administrators may not always have your child's best interests as a priority. It's not that they don't care- of course they do. It's just a matter of competing priorities, special interests, and needs. Parents need to be proactive advocates for their children and it starts with learning about these important issues. Your child's best interests are in your hands. And as you set a good example of standing up for your child's needs, you'll be teaching your child how to look out for him or herself as well. <br /><br />Schools may or may not initiate the process of putting a plan in place. Some schools may even discourage you for various reasons. With 1000's of schools across America, there is a wide range of good, bad and ugly. Unfortunately, there are plenty of lawsuits against schools that refuse to (or simply can't) meet the requirements of these federal regulations. Having a basic understanding of these plans will help give you the power and tools to ensure that your child's physical and educational needs are met at school.<br /><br />Federal regulations have been set up to prevent discrimination against individuals with disabilities. As a part of these regulations, both IEP and 504 Plans ensure that all children are granted an opportunity to receive an education regardless of disability or physical limitation. There are subtle but very important differences between the two types of plans. Deciding which one is right for your child is essential and should be discussed with experts if you are unsure. A primary criteria is whether or not your child needs specialized education. If this is the case, it is most likely that you would need an Individualized Educational Plan (IEP). <br /><br />IEP Basics: IEPs speak specifically to the rights of a "Free Appropriate Public Education (FAPE)" and are derived from the Individuals with Disabilities Education Act (IDEA). The Individualized Educational Plan (IEP) was developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.<br /><br />"Special education" under IDEA does not mean placement into a special education classroom. It means the child has been identified as having unique educational needs related to his or her disability and is entitled to an IEP to meet these needs. To be eligible for special education services, it is necessary to prove that the child has a disability that interferes with his or her education and performance. Children who receive special education services under the IDEA are automatically protected under Section 504. <br /><br />Not all students who have disabilities require specialized instruction. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document called a 504 Plan is created to outline their specific requirements.<br />504 Plan Basics: 504 Plans are derived from Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law that applies to all institutions receiving public funds including public schools, libraries, etc. and is designed to guarantee that people with disabilities will not be discriminated against. <br /><br />Under Section 504, the child with a disability may receive accommodations and modifications that are not available to children who are not disabled. Examples of common 504 Plan accommodations include preferential seating, modified homework and testing schedules, and assistive technology (like recording devices for note-taking, special keyboards for physical disabilities, etc.). <br /><br />Some state laws require a health care plan to be in place for all students who require medication and/or treatment while in school attendance. This could be a 504 Plan, IEP, or another document called an Individualized Health Care Plan (IHCP or IHP). IHCP's give detailed information about the medical services your child will require at school. See last week's blog for more information on IHCP's.<br /><br />IEP or 504 Plan or IHCP: Which One? Very generally speaking, the question of whether you need an IEP or 504 Plan is that of special accommodation. Does your child need something different than what is already available at the school? If there are already systems in place to meet your child's healthcare needs, then an IHCP might be all you need. Most schools have systems in place to deal with taking pills, food allergies, asthma and other more common health issues. But if your child needs special accommodations, then an IEP or 504 Plan is probably needed. And the primary distinction between these two plans is the need for specialized instruction. If your child needs specialized instruction, then the IEP provides for this. <br /><br />Of course there are exceptions and caveats to all of this and here's an important one: If your child is experiencing learning difficulties due to excessive absences from illness, he or she might qualify for an IEP under the "Other Health Impairments" section of the Individuals with Disabilities Education Act (IDEA).<br /><br />"Other Health Impairment" is one of the 14 categories of disability listed in the IDEA. Under this section, a child who has an “other health impairment” is likely to be eligible for special services to help the child address his or her special educational needs resulting from the disability. Children with cystic fibrosis, cancer, or other medical conditions that require extended hospital stays or periods of disability may fall under this category and be eligible for private tutoring.<br /><br />There is often confusion when it comes to private schools and their ability to serve children’s needs in this area. It is important to remember that IEP and 504 Plans are only guaranteed for children at schools that receive government funds and/or services. It would be vital to speak in depth to administration of any private school you are interested in your child attending to see whether or not this is the case for them and how, exactly, these matters are handled.<br /><br />Where to Start? If your child has a disability or chronic health condition and may have need of accommodations during the school year, the place to start is to request a meeting in writing with the teacher, copied to anyone else you feel is appropriate (e.g. the nurse, principal.) This needs to be formally written, not a quick ‘note’ sent in your child’s folder or email. This starts a ‘clock’ on a timeline the school must work within to ensure the child’s needs are handled in a timely manner. <br /><br />Outline your main concerns in the letter and state you are requesting a team meeting to discuss the need for an IEP or 504 plan for your child. They are required to respond to you and schedule a meeting within a short time. Your child’s medical provider can also help a great deal by providing a letter stipulating what your child’s needs are. If your child’s care team or hospital has access to one, medical social workers are wonderful resources as well. <br /><br />I did not need a 504 Plan for my own two children with cystic fibrosis until this year. My children's needs have always been met by providing the school with a letter that served as a health care plan (the subject of last week's blog). But as my oldest goes into middle school, it's time to take the steps to ensure that we have a plan in place to deal with the complexities his illness might bring especially as he moves into high school. <br /><br />So, now that you have a basic understanding of IEP and 504 Plans, I hope you'll join me next week for a blog on how to present and discuss these plans with your school administrators in ways that create a positive, collaborative relationship rather than an adversarial one. <br /><br />There are no absolute guarantees that what you put in your plan will be met. Designing a well-written plan that is likely to be accepted by the school and will meet your child's needs now and into the future is an art form that requires patience, knowledge, and good communication skills. Take the time learn about this now rather than waiting until there's a problem at school. Your child's future is at stake. <br /><br />*********<br />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<br /><br />This information is not meant to replace professional medical, legal, or mental health care. <br /><br />References: <br />Conners, S., M. Ed (2002), Section 504, the Americans with Disabilities Act (ADA)<br />vs. The Individuals with Disabilities Education Act (IDEA): What is the Difference, <br />Online at: http://www.nldline.com/iep_vs_504.htm<br /><br />Holly, Tips for Completing a 504 Plan, www.TipsForCFParents.com<br /><br />Logsdon, A. (20XX), Top 5 Comparative Points Between Section 504 and IDEA, <br />Online at: http://learningdisabilities.about.com/od/disabilitylaws/tp/504IDEAdifferen.htm<br /><br />University of WA (2002), What is the difference between an IEP and a 504 Plan?, <br />Online at: http://www.washington.edu/doit/Stem/articles?52<br /><br />US Dept of Education, Office for Civil Rights, <br />http://www2.ed.gov/about/offices/list/ocr/504faq.htmlLisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-448596615437875312011-08-25T09:25:00.000-07:002011-09-13T18:11:44.679-07:00Back to School Days with Special Medical Needs: Start the School Year on Track with a Parent-Teacher MeetingThis blog series will get you started on the right "back to school" track if you have a child with health issues starting with: <br /><br /><strong>Start the School Year on Track with a Parent-Teacher Meeting</strong> <br /><br />It's that time of year again- back to school. And with it comes an air of excitement, anticipation and, for parents, some stress and worry. "Will my child like his or her teachers?" "Will he or she get along with the other kids?" "Will my child do well this year?" And, for those of us with special medical needs, "How will I ensure that my child's needs are taken care of?"<br /><br />Of course, as loving parents, we want everything to go "just right". But, as we all know, the reality is that things don't always work out the way we'd like. Kids get teased and left out, teachers aren't perfect, children don't always go to the head of the class, medications get forgotten, and there are plenty of things that can get in the way of "the perfect school year." And of course, there's always head lice to keep us on our toes. (Ewww!)<br /><br />The good news is that each of these "experiences" can provide our child, and us, with a new opportunity to learn and grow. And, with a bit of thoughtful planning, we can increase the odds that the year will go well and our child's special needs will be met. <br /><br />Let's start with effective communication. This is the most important thing you can do to help your child get started on the right track. This includes communicating with the teachers, school staff and administration, your child and your child's peers. This first blog will deal with communicating with your child's teachers.<br /><br />About a week or two before school starts, request a meeting with your child's teacher(s). The subject matter of this meeting should be to discuss and document your child’s medical requirements and the process for getting those needs met at school. You’ll also want to be prepared to educate about the basics of your child's medical condition. <br /><br />Depending on your child’s needs, this initial conversation might result in starting the process of creating an IEP or 504 Plan (which we’ll discuss in next week’s blog) especially if this is your child’s first year at this school. This conversation should take place every year with your new teacher even if you have an IEP or 504 Plan in place. <br /><br />Be aware that if your child needs to take any medication at school including over-the-counter drugs, a medical authorization form for each medication needs to be signed by your doctor and turned in by the first day of school. Be sure to check on your school’s medication policies as far as labeling, location, and how the meds will be given to your child (by the teacher? Nurse? Office staff?). <br /><br />Providing information in writing is essential. Even if you are unable to schedule a face-to-face meeting, make sure that you provide written documentation about your child's needs well before school starts. Teachers and staff are very busy during the first two weeks of school. They are less likely to pay close attention to anything you hand them when they have thirty kids running around the classroom on the first day of school. <br /><br />I provide two basic documents to my kids' teachers a week before school. One is a letter that explains how the diagnosis of cystic fibrosis affects my children and what their needs are. Most illnesses have a wide range of symptoms and medical requirements and it helps the teacher to know what the particulars are for my child. The "teacher letter" is written in a way that helps the teacher understand each need plus it creates a partnership between me, the teacher and my child. <br /><br />The other document I provide is a general pamphlet about my child's medical condition. Most medical conditions have something like this through a non-profit organization that supports the illness. If a pamphlet is not available, use a printed explanation from a trusted source like the National Institutes of Health (NIH). The point is to give the teacher, staff, and school nurse some basic information about your child's medical condition. You can view samples of the documents I use at the following link. Feel free to copy and modify as you see fit. <br /><br /><a href="http://www.happyheartfamilies.com/SchoolIssues.html">http://www.happyheartfamilies.com/SchoolIssues.html</a><br /><br />Many schools require a more formalized document called an Individualized Health Care Plan (IHCP or IHP). Your child's IHCP should include things like the medical services your child should receive at school including medication, when, where, how the services will be provided and by whom, and an emergency response plan that details possible emergencies and what to do. The IHCP should be shared with your teachers, kept in your child's school record, and attached to an IEP or 504 Plan if there is one in place (more on that next week). Schools often have their own version of an IHCP that can be filled out so be sure to ask. If not, samples of health care plans can be found online including ones written for specific medical conditions like diabetes, asthma, allergies, etc.<br /><br />So, that's the first step to having a good school year- making sure that your child's school administrators and teachers are fully aware of your child's medical condition, the individual aspects of it that affect your child, and what your child will need at school. <br /><br />It's also a good idea to provide this information to all staff who will come in contact with your child each day. Don't forget PE teachers, coaches, music teachers, special classes and "yard duties" (as my kids call the people who help on the playground). <br /><br />Open, honest, thoughtful communication done upfront, before problems occur, will help ensure that your child will be understood, properly cared for, and safe throughout the year. <br /><br />*********<br />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 <a href="http://www.parentingchildrenwithhealthissues.com/index.html">www.ParentingChildrenWithHealthIssues.com</a>Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-65878768021151920132011-03-09T08:51:00.000-08:002011-03-09T08:53:12.359-08:00When Two Stories CollideAs 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. <br /><br />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. <br /><br />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?"<br /><br />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. <br /><br />"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." <br /><br />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. <br /><br />"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." <br /><br />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. <br /><br />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.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-41540160334041317492010-12-07T13:32:00.000-08:002010-12-08T20:09:42.578-08:00A Partridge in a Pear Tree Helps Us Keep Things in Perspective<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk0FwY-UOIcJIe0MdlQAGH9Nihn1GXm4Ft45AsUOjzplkgaQSqyo-0yjO4ckY8snW9kJPQq7myVqAnaBW0nhCWjxi706GnFgzqdQ6xPN9gMap7pSFBpVDgmrnhkTSh0nAhfhe3nVC5Rwg/s1600/MommyClausWEB.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 151px; height: 182px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk0FwY-UOIcJIe0MdlQAGH9Nihn1GXm4Ft45AsUOjzplkgaQSqyo-0yjO4ckY8snW9kJPQq7myVqAnaBW0nhCWjxi706GnFgzqdQ6xPN9gMap7pSFBpVDgmrnhkTSh0nAhfhe3nVC5Rwg/s320/MommyClausWEB.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5548529827533326786" /></a><br />Thinking about the "Twelve Days of Christmas" and the upcoming holiday season, it strikes me how perfect the timing is for this particular holiday. At the end of the year, it's a time for reflection about the blessings, joys, and challenges experienced through the year past. And, with a New Year approaching, it's a time to look ahead with hope and anticipation for what the future brings. <br /><br />As I reflect on the hard year that our family has personally experienced, like so many other families during these tough times, it's tempting for me to fix my gaze on the challenges: my husband's job struggles, the financial problems, and the kids' health challenges (both have cystic fibrosis). And, then of course, the news reports don't help much as bad news screams from every street corner. It's hard to get away from it all!<br /><br />And then I think about the song, "The Twelve Days of Christmas" and it reminds me of all the many blessings I have to be thankful for. I am thankful that my true love isn't giving me a bunch of birds, maids, lords, and drummers. Although five golden rings do sound nice.... And I am thankful that we don't live in the 1700's which is when it is thought this song originated. Talk about tough times!<br /><br />Life then was primarily small farming communities. What you raised or grew, you ate. No electricity, running water, plumbing, internet, or Safeway. Imagine that. Probably half of the population lived at the barest survival level. The poorest families lived together, packed into just one room. There was no welfare or unemployment checks or SSI. If the king or queen didn't like you, off with your head! Of course there was plenty of civil unrest and war: both the French and the American Revolutions occurred during this time. <br /><br />And then there was the medical "system." Until 1745, barbers performed surgical operations. Yup, you read that right. "Will you be getting your hair cut today or having your appendix removed?" Ewww! In fact, did you know that the red and white barber pole is thought to represent the "blood and bandages" associated with those early dual-role days? <br /><br />Smallpox was a major scourge during these times. It killed 400,000 Europeans during the 1700's alone and quacks abounded. Because medical knowledge was so limited, desperate people were vulnerable to the promises made by slick and sleazy characters hence the term: "snake oil salesman." <br /><br />One of the most common treatments for many ailments was bathing in spas. Or drinking spa water. Ewww again! Was that before or after everyone had their weekly bath? Bringing this to a more personal level, babies with CF died fairly soon after birth. But today, those with CF can be very hopeful about living a full, rich life due to the many medical advances we continue to see. <br /><br />So, as hard as this year has been, in light of the time and place we live in now, I am thankful. Thankful for my faith, my family and friends, my work, my country, and my freedom. And, I am thankful for a wonderful community of people like you, our doctors, and the many others who dedicate their passions, skills, and lives to helping those of us who live with CF to live better. Thank you. And I'm also thankful for a "partridge in a pear tree" for helping me keep things in perspective.<br /><br /> *************<br /><br />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 www.ParentingChildrenWithHealthIssues.com. <br /><br />For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com1tag:blogger.com,1999:blog-2106077388763066236.post-26923998453968676562010-11-26T16:59:00.000-08:002010-11-26T17:00:17.054-08:00Turning Knowledge Into Wisdom: Being an Effective AdvocateSue 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?" <br /><br />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. <br /><br />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": <br /><br />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." <br /><br />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." <br /><br />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." <br /><br />Sue is a successful advocate for her healthcare because:<br /><br />1. She is knowledgeable about her medical condition. She actively seeks accurate information from reliable sources. <br />2. She stands up for herself and isn't afraid to be assertive.<br />3. She is calm and respectful even in the face of resistance or conflict. <br />4. She doesn't take abrupt (some say "rude") medical professionals personally. <br />5. She is not demanding or threatening. <br />6. She doesn't tell others what they have to do but instead shares what her needs are. <br />7. She understands that having an effective approach is in her own best interest so she works hard at learning good communication skills.<br />8. She tries to be appreciative of the doctor's knowledge and expertise (even if she doesn't like the doctor as a person).<br />9. She understands that being an advocate is not the same as being pushy or aggressive.<br />10. She uses a collaborative approach to solving problems. <br /><br />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.<br /><br />*************<br />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 www.ParentingChildrenWithHealthIssues.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-69885146497321786422010-11-19T12:22:00.000-08:002010-11-19T12:24:40.708-08:00Giving Our Child Gifts for a Lifetime: Using Tough Situations as Teachable MomentsA 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. <br /><br />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. <br /><br />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: <br /><br />1. Handle the situation well without being victimized by it. <br />2. Deal with conflict in a healthy manner. <br />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. <br /><br />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. <br /><br />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). <br /><br />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. <br /><br />Here are some examples of some things she might consider saying during the meeting with the school administrators: <br />• "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."<br />• "Is there some reason that you chose not to speak with me about it first?" <br />• "Are there any issues with my son here at school that led you to feel the need to get his detailed medical information?" <br />• "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." <br />• "I would like you to get my permission before you interview him in such a manner again." <br />• "My son feels really uncomfortable about what happened. I'd like for us to have a discussion with him to process what happened."<br /><br />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. <br /><br />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. <br /><br /> *************<br />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 www.ParentingChildrenWithHealthIssues.com. <br /><br />For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-25150125845683642892010-08-21T14:18:00.000-07:002010-08-21T14:29:59.493-07:00Sometimes It Is All About CFIt's hard sometimes for my life not to be "all about CF" as much as I try not to let it be. <br /><br />I just returned from a visit to "Gramma's House" in Florida with my two kids who both have cystic fibrosis. My son is on an inhaled antibiotic which must be done three times a day. So the all-day plane trip from Seattle to Tampa needed to include plans for that including the cleaning and disinfection of the equipment. <br /><br />Then of course there was the packing. A whole duffel bag filled with medications, nebulizers, mini-compressors, and other medical paraphernalia. Plus there was the vest system (a 40 pound machine that costs about $15,000) that I also had to bring along for our three week visit. And it all needed to be carried on the plane and checked through security. I looked on with envy at other travelers who only had one little bag to carry compared to our seven. Yes, seven. Including our lunch. <br /><br />Then there was the dog. Yes, the dog. We brought her, too. Figured we brought everything else, might as well add her in. I almost brought the kitchen sink but found a work-around by using Control III to disinfect the antibiotic equipment instead...<br /><br />The vacation was wonderful and I'd do it all again. Our philosophy has always been: "Live life well with CF, don't let CF run your life." It takes a lot of effort but we do this pretty well, I think. Our kids (so far) are very happy and have wonderful, can-do attitudes. They have enjoyed many years of relative "good health" filled with adventures and just being kids despite the one-to- two hours of medical treatments they need to do each day along with schoolwork, sports, friendships and extra-curricular activities. <br /><br />Usually I am up to the task of being the "mom-glue" that holds it all together. But today, I feel weary and worn out with it all. My husband's six month job loss has created no small amount of stress- primarily around the medical insurance issues since just our "everyday" medications alone cost about $100,000 a year. Thank Heavens for pharmaceutical coverage which knocks this down to about $12,000 a year out of pocket- still a lot of money but it sure beats $100k! <br /><br />Then there are the doctors' visits nearly every other week it seems lately, sinus surgeries, and hospital stays for IV antibiotics. Now we have another upcoming visit to "Club Med" (aka: the hospital for a two week round of IV antibiotics) for my son next week as well as a sinus surgery for my daughter- all squeezed in right before school starts. Back to school shopping anyone? <br /><br />We are so grateful that my husband now has a good job with excellent medical benefits. We hope that life will stabilize soon. Whatever "stabilize" really means when you have two kids with CF. I think that means a lull in between the crises. <br /><br />I am ready for a good, long lull right about now- after my daughter's surgery and son's round of IV antibiotics, of course. And, I'll do my best to remember that my children are learning how to handle hard times by my example. I know that if I have a positive, "we can get through this" attitude, they will too- now and in the years to come. <br /><br />I think that's the hardest part of parenting- being a good example when I am weary and sad. But, as a parent educator by profession, the knowledge of how important this is to my precious kiddos will help to keep me on track. Even if I'm not perfect. It's good enough to be good enough. They will also learn by my example that it's okay to be sad and weary for a little while when life is hard. And, as I get back on track, they will learn from that, too. <br /><br />- Lisa C. Greene, mom of two kids with cystic fibrosis, author and parent educator www.TipsForCFParents.com and www.ParentingChildrenWithHealthIssues.comLisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-61528533889285254502009-12-31T15:14:00.000-08:002009-12-31T15:19:06.089-08:00Helping our kids discover new talentsLove and Logic is made for moments like this:<br /><br />Mom!! There's a flood in the bathroom!!" Words every parent hates to hear especially first thing in the morning. <br /><br />Running into the bathroom, I discover nearly an inch of water on the floor. Luckily, the kid had the presence of mind to turn the water off at the toilet. <br /><br />Grabbing towels by the handfuls, we start sopping and mopping. The urge to be really mad is overwhelming. Empathy is difficult in moments like this. "What a bummer" just doesn't seem strong enough. So, I manage to squeak out something like, "Awww maann! This is a BIG mess! Geez. I hope it doesn't ruin the walls..." Sop, sop, mop...<br /><br />I have to admit my husband did a better job of not reacting. He walked in, took one look, saw that we had it handled and walked back out without a word. <br /><br />We got it mopped up and thought that was the end of it. My son was responsible for getting all of the wet towels and rugs washed. <br /><br />Then, the other words a parent hates to hear after a flood in the upstairs bathroom: "Mom! The stairs are all wet!" Uh oh. Water was creeping through the ceiling and dripping on the stairs. Lovely. <br /><br />My son says, "Oh man. Fixing this is gonna cost me my whole allowance." Sop, sop, mop... It was really hard not to say, "Yeah- for an entire YEAR!" <br /><br />Luckily, Love and Logic saved me again. I knew that it was okay to delay the consequences. I didn't have to make any life-altering parental decisions right now. Besides, I was too busy sopping, mopping, and now blotting (the drywall)...<br /><br />Jake felt really bad about putting too much toilet paper down. Apparently, we've done a pretty good job of raising kids who solve their own problems. He tried to solve this one himself by re-flushing twice while the bowl slowly filled up and over the brim. Thankfully, he knew where the water turn off was located, he just didn't know which direction to turn it. The second try worked like a charm... <br /><br />We briefly went through the mechanics of how toilets work and now he knows not to do that again. He offered to pay for any damage and we let him off the hook. He was very remorseful and everyone makes mistakes. In this case, the natural consequences were certainly enough to do the teaching. <br /><br />Then I heard music to my parental ears, "Hey Mom! I think I discovered another talent." What's that dear?" "Doing laundry!"Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-25415674144713129452009-12-09T11:38:00.000-08:002009-12-09T11:44:35.201-08:00Getting Revenge on Spammers with the Help of LinkedInWith social networking all the craze these days, it's been interesting for me, a student of human nature, to observe this phenomenon. Not only from the sidelines, which is what I was prone to until recently, but now as a somewhat unwilling participant. Let me explain:<br /><br />I am a "face-to-face people person." There is so much value in face-to-face conversations which include eye contact, body language, and back and forth interaction (as opposed to one-sided dialogue, one sound-bite at a time). And since I am a "huggy" sort of person, I appreciate the opportunity to give, or receive, a quick hug when a conversation warrants a little human touch and understanding. There's no substitute for a quick hug just to say "I'm glad to see you!" or "I care about you" when a person is struggling with something. But, I digress....<br /><br />Since we are all so busy these days and front porch swings are out, social networking has become a major way to connect. I have to admit- it's better to connect on Facebook than not connect at all. But even Facebook takes time. And it's way too easy to get sucked into spending time on finding out about who ate what for breakfast. So I was very resistant to signing up for Facebook for a long time because I'm busy! I have two kids with special needs and a business to run. I also do housework and help out at the kids' school when I can. I can hardly keep up with my emails much less add another "attention hog" to my crazy schedule.<br /><br />I really resisted but the pressure mounted. It seems like every person I know is on Facebook. The last words I would hear after a coffee date and hug were, "It's been great seeing you again! You've just GOT to get on Facebook so we can stay in touch!"<br /><br />The breaking point was when my kids' grandma (my mother-in-law) joined Facebook. I observed how hip she seemed when talking with the family teenagers about it and sharing how she had connected with a friends she hadn't seen in fifty years which resulted in a wonderful dinner date. Aha!! The personal connection link! Maybe Facebook would be a good idea after all. So, I succumbed to the pressure and signed up. And, I have to admit, it's pretty cool. I don't spend a whole lot of time on it but every now and then, it's fun to pop on and see what's up with others or share a big happening in my own life.<br /><br />So, as a professional, I decided to join LinkedIn- sort of the Facebook version of the business world. I like the idea of having a professional profile that people can see and learn about my business. And, from what I hear, everyone who's everyone in business needs to have a LinkedIn profile.<br /><br />I signed up, created my profile and added my email addresses. And that's where I made the mistake. Not "a" mistake but THE mistake. Not knowing any better, I said, "Yes, add my whole email list to my profile so we can link up." Since this is my business list, I figured, "Why not? I'd love to know who else is on LinkedIn." 802 contacts. Wow. I didn't even realize I had that many until after I clicked the "fatal" button. Every email I had ever received from anyone was stored in my address book. I started getting last minute reservations- "buyer's remorse" if you will. What had I just done? Who were all these people?<br /><br />Then, people started accepting my invitation; people I hadn't heard from in ages and who it was fun to connect with. Hmmm. Maybe this wasn't so bad after all. Most people, out of 802 contacts, didn't reply. No surprise. And some sent a sweet note saying, "Thanks but I don't want to join Linked In." Uh oh. That's when I realized that LinkedIn wasn't just using my email list to connect me with others within their network but was using me as a "marketing tool" to get other people to join. I didn't like the feeling I was getting about all of this... But I figured, "What can I do?" What's done is done and we'll move on.<br /><br />And then, LinkedIn sent out another message "reminding" people to accept my invitation which also urges them to join- all in my name! Oh dear. I didn't know they'd do THAT. I started getting more messages from folks saying, "Nothing personal but no thanks." Busy people who had to take the time to reply to more marketing. Aren't we just barraged with it? And, I apologize to you all for pushing the wrong button! My only consolation is that, since my email browser keeps the address of every person who has ever sent me anything, it probably includes spammers. Hmm. Payback time on that one...<br /><br />In conclusion and upon reflection, I learned a lesson about making sure I know exactly what I am getting into before I sign up no matter what "everyone else" says. And, that there are pros and cons to social networking like just about anything in life. Except, of course, a hug.<br /><br />**********<br />Lisa C. Greene is an author, public speaker, and mom of two kids with special needs. Lisa's websites are www.ParentingChildrenWithHealthIssues.com and www.HappyHeartFamilies.com. You can visit her on LinkedIn!Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-12293743214637295152009-05-20T16:50:00.000-07:002011-07-03T15:11:42.665-07:00Counting on Gray Hair...Do you ever have one of the “mommy sad” moments? When a fleeting emotion just catches you off guard and surprises you with its intensity?<br /><br />The morning routine of getting kids ready for school can be a bit monotonous, even stressful at times. But this morning was fun. The kids were chatty, playful, cooperative and even ate all their breakfast (eureka!).<br /><br />I sat with them in the hallway, in my robe and jammies, waiting for my carpool buddy to pick them up. Sitting on the stairs with the kids towering above me, my daughter noticed a gray hair. “Mom! You have a gray hair!” “That’s what happens when you get old.” “You’re not old! Let me pull it out.” “Oh that’s okay, more will just grow back.” “But it’s really noticeable!” “Okay- pull it out.” She pinches the hair tightly in between her fingers. Just then the horn honked and my daughter jumped, yanking the hair out from it’s root. “Ouch!” We all laughed and I kissed them goodbye and waved them off to school.<br /><br />As I closed the door, still smiling, the emotion hit. I love them so much. They are such great kids. (Even though there are times that they drive me nuts with their typical kid antics like fighting with each other or leaving their junk everywhere for the “maid” aka “m.o.m”.) I can’t imagine life without them. Someday, they are going to grow up and move out and I won’t hear their excited giggles or wild laughter or find their handprints all over my freshly cleaned stainless steel appliances. I might actually miss having a warm little body come into our room at night, waking me up, and snuggling in to the “big bed” because of a scary dream.<br /><br />I know they’ll grow up; they are growing up right before my eyes. I guess this is probably something all moms feel. But the emotion of the moment is especially poignant because I realize that they might “leave” home in a different way. Having what is still termed a “life-shortening illness” despite the great medical advances that continue to occur at an accelerated pace, makes me feel especially affected by the moment.<br /><br />Sometimes I’m almost afraid to love them but I can’t help myself. So for now, I guess I’ll continue to enjoy our time together, moment by moment. For now, I’ll put my hope in God’s promise not to give me more than I can handle. And for now, I’ll continue to grow gray hair and keep up the faith that I’ll see theirs’ turn gray someday, too.<br /><br />*************<br />Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach 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, see www.ParentingChildrenWithHealthIssues.com. <br /><br />For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com1tag:blogger.com,1999:blog-2106077388763066236.post-84240634043540047652009-05-14T16:41:00.000-07:002009-05-14T16:44:42.311-07:00CF Mom: Super Sleuth ExtraordinaireMy 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.<br /><br />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.<br /><br />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.<br /><br />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 <br /><br />So much for being a pharmaceutical super sleuth. My daughter simply has a case of “sore muscles.” Go figure… <br /><br />*********<br /><br />Lisa Greene, BS CCP<br />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 <a href="http://www.happyheartfamilies.com/">www.HappyHeartFamilies.com</a>Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0tag:blogger.com,1999:blog-2106077388763066236.post-61943699150435007312009-01-24T13:02:00.000-08:002009-01-24T16:30:39.220-08:00Dipping My Big Toe Into the World of BloggingOkay, I'm moving up a couple of notches in the world of technology. I have finally joined Facebook <em>and </em>am now creating a new blog. Isn't this an amazing time and place we live in?<br /><br />I'll post my experiences with my two kids here and my thoughts about parenting. I have a rather unique perspective on parenting because I am a parent educator, a parent coach <span style="FONT-STYLE: italic">and</span> a mom- all at the same time.<br /><br />I'm also the co-author of a Love and Logic book called <em>Parenting Children with Health Issues. </em>I wrote this book with Foster Cline MD who is a child psychiatrist and co-founder of Love and Logic.<br /><br />Both of my kids have cystic fibrosis so this book has been a real blessing to me and my family. I wanted to write it because there isn't another book out there like it and I knew <em>I</em> really needed it. Plus I knew it would help many others, too, and Dr. Cline was kind enough to agree to help me. So, I've learned an awful lot since we started this project in 2004 and I am excited to share with you.<br /><br />With kids, there is never a dull moment. They continually cook up the unexpected. So, I get to experiment first-hand with all of the new parenting tools I learn and will have plenty of stories to share with you. I hope my experiences will give you some insight and tips for parenting your own kids, too.<br /><br />So, welcome to my blog and I hope you pop in often to see what's up!<br /><br />Happy Parenting!Lisahttp://www.blogger.com/profile/12594121982602311572noreply@blogger.com0