Momference: A Meeting of the Moms

When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, “How long does my child have to live?” Medical professionals respond by quoting the statistics.
 
Statistically, all illnesses have a somewhat predictable course or an “average life expectancy.” But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It’s very hard to predict who will be among the many who “beat the odds.”
 
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children’s college education. And parents have been known to lower their expectations concerning their children’s performance in school, sports, or other important matters relating to the future and living a “normal” life.

This lowering of expectations, with its suggestion of a “What’s the use?” attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.

The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won’t be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:

When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.

Liz was optimistic, enthusiastic, and passionate about her life’s work and interests. She shunned the limitations imposed by CF.   As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.

As an inspiring individual, Elizabeth Nash was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her “statistical average” at the time but her spirit lives on as her example and courage continue to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an “I can beat this” attitude. Parents who give off positive, “we can beat this” vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this indomitable and inspiring attitude.

In summary, wise parents handle statistics and medical predictions by:

• Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses. 
• Realizing that for all individuals, the future is unknown.
• Many lives are shortened by unexpected illness and traumatic events. 
• Encouraging their children to believe that they have every chance of being one of those children “who fall on the high side of the bell curve because you take such good care of yourself.”
• Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
• Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
• Believing that those who bravely face life’s obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
• Answering a child’s questions about the course of his or her illness can be difficult. How can parents answer their child’s questions with hope if they have not come to a good place themselves? The child will almost always take the parent’s cues. So don’t let scary statistics rob your hope and joy!  

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About Foster Cline, MD and Lisa C. Greene
 
From the book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Other Special Needs” by Foster Cline, M.D. and Lisa C. Greene available at bookstores. Dr. Cline is a well-known child psychiatrist, author, and co-founder of the popular Love and Logic parenting program. Lisa is the mother of two children with cystic fibrosis and a parent coach.  For free audio, articles and other resources, visit   ParentingChildrenWithHealthIssues dot com.

Kids with ADD usually have a harder time paying attention and maintaining organization.  They can often be hyperactive or impulsive.  These behaviors can lead to frustration and failure in school.  The best way to help is to provide the structure necessary to develop the patterns that help them learn.  We all need structure to make the most of our time, but ADD kids and adults need it even more.

Let’s talk about some ways to make this happen:

• Set Up Routines.  At home, homework should be at the same time and in the same place as much as possible.  Keep their learning modalities in mind when doing this.  Do they need a quiet place to work or do they need some background noise like music in order to concentrate.  Do they need to be able to move around while working or to have something to fidget with?
  Meals, chores, outside activities and family time should also be scheduled with as much regularity as possible in order to maintain a sense of routine, organization and time management.  If there isn’t time for your child to do everything that is scheduled, eliminate the least important things. 
• At school, enlist the teachers to suggest ways that structure can be maintained for your child during the school day and ask for their help.  It could be as simple as quietly asking your child at the end of the class if they wrote down the homework assignment.
• Book bags and lockers can be organized to minimize disorganization and frustration with color coding.  Ask for an extra set of books for the home if your child forgets to bring them home.
• Use Charts and Rewards.  Create charts for homework, chores, etc. and establish rewards for consistency.  For example, if your child has trouble remembering to bring home their homework assignments or to get the assignments handed in at school, keep a chart and do something special with your child when they have done it consistently for a week.  Remember that this is not about the reward.  It is about creating learning patterns in your child’s brain that will help them to succeed.
• Set Rules and Stick to Them.  Create rules for homework, chores, room cleanliness, etc. and stick to them.  If you, as a parent don’t provide the structure of sticking to the rules, you can’t expect your child to do so.  Making rules and sticking to them is one of the best ways to help your ADD child create the brain patterns that will help them be successful.
• Be Patient.  Change takes time and this is even more so when dealing with ADD kids.  So be patient if the charts don’t work right away or the homework assignments are still being forgotten.  It takes time and patience to establish new routines, but it will be worth the wait.
• Praise Your Child.  Take every opportunity to praise your child for even the smallest positive change.  This is the best way to reinforce the behavior and encourage your child to continue.
• Be Flexible.  I don’t mean be flexible about routines and structure.  I mean if something doesn’t seem to be working, be prepared to change.  If doing homework after school doesn’t work and your child works better after dinner, try it.  Always be willing to work with your child to create routines that provide the best result.
• Be Consistent.  I have saved the most important for last.  Once you have established routines that work, be consistent!  You cannot create strong patterns for your child if you are not willing to maintain consistency for them.  Be consistent with support, praise, rewards, etc.

Does this sound like a lot of work?  It is, but what is at stake is your child’s future.  Isn’t that worth the effort?  If you need help, ask for it from teachers, tutors, coaches, or other parents who are dealing with the same issues. 

By:  Sharon Howell

If you have not signed up for the upcoming FREE Special Needs Event: Shut Up about your Perfect Kid event with Patty Konjoian and and Gina Gallagher, then do it now before all the spaces are taken! 

By: Nikki Woller, LCSW, CFLE

Recently while shopping with my five year old daughter, Allie, my husband and I encountered a common family scenario. As we progressed through the isles of the store we saw Allie’s behavior transform from angelic to intolerable. By the end of our thirty minute expedition she was laying under the cart, growling at us, and at the self check out line began to scream as she manically tried to scan the items over the checkout bar and then shove the items into plastic bags. Daddy thankfully intervened and tried to take Allie out of the store when she broke free of his grasp and quickly dashed into the isles. Of course, there was what felt like 400 other suburban moms behind us in line looking on in horror. As my husband went to get Allie and take her out of the store, I was at the check out counter feeling mortified. I just had to say something. I looked right at the parents in line behind me and kindly said, “I am so sorry, but my daughter is mentally ill and sometimes we just lose control of her.” There! The secret is out. I couldn’t believe that I said it. Afterwards, the eyes of the other parents turned with compassion as Allie screamed by them as she was being escorted out of the store by her father. And then, the mom behind me said, “Is she ADHD? My daughter is ADHD.” I looked at her, smiled and said. “No, my daughter is bipolar” but I thought, “Wow, she gets it.”  

Parenting a child with mental health exceptionalities is complicated. One in five children has a diagnosable mental illness with one in ten having a severe mental illness. These illnesses can sometimes onset as young as three. Left untreated these illnesses can lead to school failure, family conflict, drug abuse, violence and suicide leaving a major economic and emotional impact on our society.

I am commonly asked, “How do you know the difference between a mental health problem and a behavioral one?” A mental health disorder is a health condition marked by alterations in thinking, mood or behavior that causes distress or impairs a person’s ability to function. Although any condition that  impairs the mental and emotional functioning of a child is included, common conditions that fall into this category are ADHD, mood or psychotic disorders, anxiety, depression, forms of autism and TIC disorders. 

A child’s decline in school performance, sudden change in grades, regular worry, refusal to take part in activities, nightmares, fidgeting, aggression, running away, tantrums that last hours, depression, irritability and difficulty separating may be signs of an impeding mental health condition.

If you suspect your child is exhibiting signs of mental illness:

• Consult knowledgeable professionals – Early treatment interventions are essential to helping your child. It is important that you seek out opinions from professionals trained in childhood mental illness, and develop a well rounded team that is supportive of you and your family. 
• Become educated – Being told that your child has a mental illness is scary. Once you’re finished freaking out, educate yourself and your family about the illness. The more you know, the easier it will be to manage your child.
• Enhance your parenting skills- Parenting a child with mental illness requires specialized parenting skills and that those skills be superior. Because children with mental illnesses can be difficult they are statically at high risk for child abuse. Caregivers often become frustrated, not understanding the behaviors that they are seeing. Your skills, compassion and mannerisms must fit the child that you are parenting. 
• Enhance your child’s strengths – All children have strengths. Don’t let your child’s illness consume their life. Finding things that your child is good at can help boost self esteem and release stress in a positive manner. 
• Know your child’s limits – Don’t set yourself or your child up for failure. Avoid areas or activities that you know will agitate your child. If that is not possible to do, take someone else with you who is on your team in case a problem occurs.
• Be an advocate for your child – Children with mental illness fall under the protection of the American’s with Disabilities Act. They are entitled to reasonable accommodations to help them be successful in every environment, including school.

If you have not signed up for the upcoming FREE Special Needs Event: Shut Up about your Perfect Kid event with Patty Konjoian and and Gina Gallagher, then do it now before all the spaces are taken! 

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If you ask me whether I’ve seen a particular adult movie, my response is likely to be “No.” But if you ask me about any kids movie, I could tell you about the characters, plot, and punch-line all in one breath.  That’s how it is when you live with young children.  

So, it shouldn’t be too surprising when I tell you that it was in the Disney movie Finding Nemo that I saw a great metaphor of what it is like to live with kids with special needs.  You see, both of our children have cystic fibrosis so I know what it’s like.  And, like the clown fish dad on Nemo (named Marlin), I have journeyed from the place of over-protective and “worried about everything” to “still worried about everything but handling it a lot better.” 
 
I suppose there is always room for improvement in most everything in life, especially parenting.  The problem with parenting is that we may not realize how much improvement we really need until it’s too late (ie: our teenagers become hellions and we wonder what happened).  The problem with parenting kids with special needs is that “too late” doesn’t mean just a dented car or some experimentation with booze or sex- it can mean the difference between life and death.  The stakes can be so very high… 

The struggle to resist the powerful parental impulses to rescue, hover and over-protect are played out in Finding Nemo. The paradox is that it is in letting go of the intense need for protection that actually gives a child the freedom to become a hero and to unlock the greatness of spirit inherent within those who have learned to cope well with suffering.  Just like Nemo! 

We begin Nemo’s story with a happy little fish couple embarking one of life’s greatest adventures- having children. Then, tragically, the mommy fish and all eggs but one get eaten by a bigger fish. Here, the real story begins with Nemo and his dad “picking up the pieces” of the initial trauma.  To make it all the more poignant, Nemo is born with a deformed or “lucky” fin.  So, here we have initial trauma and physical disability- a perfect recipe to create an over- protective, hovering parent who is understandably oozing with concern for his son’s welfare.  He limits, rescues, protects and controls Nemo; his expectations are low for Nemo’s ability (due to his disability); and he does not trust Nemo. He is worried about every detail in Nemo’s fishy little life.  In fact, Dad’s life completely revolves around Nemo.  Sound familiar?

The first big event in Nemo’s life is his decision to rebel against his father’s controlling, over-protective nature.  No surprise, there.  Nemo has no choice but to exert his independence in way that opposes his dad because he has never had the freedom to make any decisions for himself.  So, he defiantly touches a boat just to prove to dad, friends, and himself that he can do it.  And, in doing so (if you haven’t seen the movie), he gets swept up by a scuba diver and appears destined to become a part of a fish collection in a dental aquarium. 

How many kids with special needs have no choice but to rebel against parental authority by refusing to comply with medical and special dietary requirements? Children, just like adults, have a strong need for control. Wise parents share the control by giving their children lots of choices. For example, a parent might say, “Would you like to do your breathing treatment before or after your homework?” or “Will you be doing your insulin shot in five minutes or ten minutes?” or “Do you plan to take your pills with juice or milk?” A lifetime of small choices creates a savings account of shared control that can be “cashed in” when it’s time for the big choices of life- like whether or not to live.       

The movie now becomes the story of a parent struggling to let go, learning to trust and accept and, as a result, the child becoming more than either had ever dreamed possible. As Nemo starts to make his own way around the aquarium, he gets stuck in a filter.  Immediately, the other fish around him leap to pull him out.  But, Gil, the seasoned old master, stops them and forces Nemo to rescue himself.  Nemo says (in panic), “Can you help me?”  Gil responds calmly, “No, You got yourself in there, you can get yourself out.”  No rescue, no over-protection.  Gil proceeds to tell him how to do it, gives him encouragement and high expectations and Nemo gets unstuck all by himself.  Now, Nemo is proud.  He can do it!  Effective parents do not hover, rescue and protect (Helicopter Parents).  They don’t demand or command (Drill Sergeant Parents). Instead, they are Consultant Parents.  They help the child identify the problem and provide empathy and support. They set appropriately high expectations, they ask good questions and encourage the child to find their own solutions to their problems with loving parental support but not rescue.

The climax of the movie brings us to the re-uniting of father and son after Nemo finds his own way out of the aquarium and back into the ocean.  When first re-united, Dad immediately adopts his old attitude of over-protection and control. However, Nemo’s compassionate spirit will not allow his father to stop him from rescuing the many fish caught in a gil net which was about to be brought to the surface of the water.  Now, Nemo has the opportunity to become a hero.  His Dad has no choice but to let him go and to trust.  In doing so, Nemo is able to release the hero that was bottled up inside by his father’s control, over-protection and rescue.  By freeing that hero and courageously rising to the occasion, Nemo changes the lives of those around him. 

I think that deep down inside the soul of every special needs child is that same hero just bursting to come out.  As parents, we can encourage our children to become a hero: someone who faces life courageously and joyfully in the face of adversity and suffering.  In doing this, we also become a hero- both to our child and to others around us.  In modeling this, we teach our children how to release that hero inside themselves.  It is not an easy journey, but a worthwhile one.  Just ask Nemo. And his Dad.

About the Author:
The concepts in this article are explored in the book Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline, M.D and Lisa C. Greene which is available online and in bookstores. Dr. Cline is a well-known child psychiatrist, author, and co-founder of the popular Love and Logic parenting program (www.loveandlogic.com). Lisa is the mother of two children with cystic fibrosis and a certified parent coach through the Academy for Coaching Parents. For articles, audio downloads, teleconference dates and answers to your questions, visit www.ParentingChildrenWithHealthIssues.com.

©2008 by Lisa C. Greene