Welcome to Holland

Today I was reminded about a fabulous essay written in 1987 by Emily Perl Kingsley about having a child with a disability.  Her message is clear.  You didn't plan to have a special needs child, but that is what you got.  And you can either spend the rest of your life being disappointed, or you can spend that time enjoying the gift that you have received.  Here is her essay:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.

And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Will Livingston wrote a great song about the experience.  You can listen to it here Welcome to Holland

PEACE

Awfulizing

When Do You Push the Panic Button?

Life is filled with suffering.  Every day, someone, somewhere is dealing with a life tragedy.  A loved one dies, a child becomes ill, a business fails, a family is ripped apart by divorce, or someone is betrayed by a once-trusted friend. 

We ask why bad things happen to good people. It is because suffering is part of the human condition. And the only thing that we can really control is how we react to life’s challenges.

Charles R. Swindoll, American writer and clergyman said “Life is 10% what happens to you and 90% how you react to it.”  I have tried to live by this advice, but have found that in some instances I have taken it to an extreme.

Early in my professional career, I learned about two important concepts that deal with these situations.  The first, called Risk Management, deals with identifying situations that might be a risk to the business and designing controls to minimize the chance it will happen.  The other, called Crisis Management, deals with decisions that must be made when something bad happens.  One concept is preemptive and the other reactive.  Unfortunately, I have had the chance to use both of them in the past.

While I did not realize it, I have transferred these techniques to my personal life. 

And even though they help me sleep better at night, I found that they can become a terrible burden when practiced to an extreme.  I’m talking about expecting the worst possible outcome from each life situation and trying to plan for it using Risk and Crisis Management techniques. 

I've discovered that rarely do these awful situations actually happen.  Yet by preparing for them, we deal with the anxiety and pain as if it was real.

Psychologist Albert Ellis calls this awfulizing. Awfulizing exaggerates the consequences of the past, present and future, conceptualizing events as being terrible and horrible--the worst that can happen.  Research has tied awfulizing to anxiety, anger, depression, shame, guilt and hurt.

Awfulizing can also result from repeated painful situations.  Remember the old saying “fool me once, shame on you … fool me twice, shame on me”?  Once we have lived through painful experiences over and over again, we begin to expect that they will happen.  But often they don't.  And when we anticipate these painful events and try to manage them in advance, we can needlessly bring stress and anxiety into our lives.

Having parented a child with a severe medical problem for two decades, I have a developed the tendency to awfulize.  I imagine that I can predict a medical situation occurring and feel compelled to try and prevent it—even though that is rarely possible.  There are two problems here. 

First is that I bring the stress and pain of a medical emergency on myself and my family even though it has not (and may not) occur.  I justify this to myself because I see myself fulfilling my job as provider and protector of my child.  I want to try and stop the pain and hurt. And I don’t want to get surprised. But the reality is that I can inadvertently bring suffering on my family when it was not necessary. 

The second problem of my awfulizing is that by trying to be proactive, I can actually take action that creates a problem.  Unnecessarily consuming expensive medical resources, over-medicating, and over-protecting all have potentially serious consequences.

Now that I recognize awfulizing and its potential negative impact, I have taken some steps to try and control myself.  When presented with a situation, I now ask myself …  

Do I have all of the information?  Awfulizers often have only some of the information and are guessing at the rest.  The solution is DON’T JUMP TO CONCLUSIONS.

Am I exaggerating the information?  People who exaggerate are prone to awfulize.  That is because when they expand the severity and scope of the information, it can quickly move to the worst-case scenario.  The solution is to KEEP IT REAL.

What do others think?  There is truth in the saying that “two heads are better than one”.  Discussing the situation with another can expose the lack of information or exaggeration.  The solution is to GET ANOTHER OPINION.

Most importantly, I have empowered my wife Kathy to bring these situations to my attention.  When she “calls me out” for awfulizing, it raises my awareness and helps me to control myself.

I hope that if you are an awfulizer, you might gain some wisdom through my experiences.

PEACE

Defeating Denial

“I believe we're all in denial about the people we love.”  David Geffen

Freud defined denial as a human defense mechanism that arises when a person is faced with a certain fact that is too painful to accept, and who then insists that it is not true ... despite overwhelming evidence to the contrary.  

Another way to think about denial is that we simply stick our head in the sand so that we don't have deal with our problems.  

Sound familiar?  

Many parents reach a state of denial when their child is diagnosed with a chronic medical problem.  While they know that their child is different, they want to believe that it will pass--that the child will "out-grow" the symptoms. But we know the truth.  As painful as it may be.  Our child will forever be different.

Denial is also the first of the five steps defined by Elizabeth Kulber-Ross in her renowned grief loss model.  The denial step is followed by Anger, Bargaining, Depression, and finally Acceptance.  She hypothesizes that a person must pass through each step if they are to achieve long-term peace.

You would be amazed how many people spend their lives struggling to get through the denial stage!

When you get stuck in the denial stage, it not only impacts you ... it holds others back as well.  And when a parent is in denial about their child, their decision-making can be impaired.  If they have not accepted that their child is disabled, they fail to advocate for the child.  In today's complex health care world, advocacy is a vital component in identifying and securing the critical support services needed to maximize the child's health and life potential.

I went through the denial stage when Melissa was diagnosed with propionic acidemia and that she had brain damage resulting from her hyperammonia-induced coma at four days of age.  But it quickly became apparent to me that her health (maybe even her life) was going to be in my hands once she came home from the hospital.  That is because this disease is treated with "diet management".  We were required to concoct a special formula for her, the recipe for which varied depending on her health status.  We had to walk a fine line.  The formulation would restrict her protein intake (the very fuel of life). If we gave her too little protein, she would not grow.  If we gave her too much, she would become violently ill and head to the hospital where she spent painful weeks while they "regulated" her system.

If I had been in denial, then I would have refused to accept this important role and there is no doubt in my mind that her long-term outcome would not have been as successful as it has been.  Embracing this role was critical in personally accepting that she was, indeed, inflicted with this life-threatening disease. 

Denial can also be a relationship-killer.  When one parent moves through the grief process and the other gets stuck, tensions rise.  The accepting parent seeks out the best care for the child.  The denying parent objects, seeing no reason why such care is necessary.  The denier may even resist the child's medical diagnosis--which is critical in obtaining the proper care.

While I had moved from denial toward acceptance, my wife Kathy got stuck along the way in the depression stage.  She blamed herself for Melissa's condition.  And each time that Melissa got sick (something that was common and unpreventable) she would blame herself.  I have to admit that each time Melissa became ill, I too searched for something (or someone) to blame.  But soon it became apparent that only the disease was to blame.

Over the past 20 years we have met many parents who are struggling with a journey similar to ours.  We watched as they struggled, remembering how we felt when that happened to us.  And sadly, we have seen many marriages end in divorce.  And in virtually all of these cases, I suspect the root cause was that one (or both) of them were stuck in denial.

When asked how we survived, I offer up a few tips.  

Denial - Not a River in Egypt.  Writer Mark Twain made this line famous, but it is so true.  Denial is a real human condition.  A natural thing that we all encounter.  But to defeat it, you must understand that it exists and make the personal decision to overcome it and move on.  Talk about your feelings with family and friends.  If you are a spiritual person, pray for the strength that you need.  And if all else fails, seek professional help.  We did.  And it works!

Don't Give Up.  Have a heart-to-heart discussion with your spouse.  Talk about the impact that your disabled child will have on your life.  And together make a decision that this experience will make your marriage stronger ... not pull it apart.

Balance the Load.  One of the most common issues that couples encounter when managing a special needs child is the additional work-load.  Those tasks might be medical-related.  Or they might be related to doctor and therapy appointments or school meetings.  And in today's world, there is a good chance you both will be working.  We learned to divide the work load between us.  This helped us from "burning out" under the pressure.  And it also quickly became apparent that caring for our special child would take BOTH OF US.  Another reason to stay together and work as a team.

Reach out to Others.  When Melissa was young we joined a local support group for parents of special needs children.  I can remember that first meeting like it was yesterday.  I looked around at the other parents and their children.  I remember thinking how lucky we were, because caring for Melissa was not nearly as difficult as the task they faced.  It's interesting how seeing the challenge of others helps put your own situation into perspective.  For the past decade we have lead a global support group for parents and professionals dealing with metabolic disorders like Melissa's.  We have shared our life journey with other parents in the group.  And this process has not only helped them,  but has been very therapeutic for us as a couple. 

Start Dating Again.  We were lucky to have live-in nanny's for Melissa.  We found young women who wanted to take a year off between high school and college and we hired them to move in with us and care for Melissa when we were at work and some evenings so that we could go on a "date".  The time away gave us time to heal.  And looking back, I believe this was one of the things that helped us win the war against depression and divorce.  I realize that this approach isn't feasible for everyone.  But you can turn to family and friends to give you a much-needed break.  Even a battery needs re-charging!

Remember that becoming a parent of a special needs child isn't something you asked for.  And you are not the first nor the last couple to face these challenges.

Don't let denial hold you back.  Use it as a catapult to move forward in your healing process.  While it might not seem so, life CAN and WILL get better.

PEACE

And When I Am Gone

ONCE UPON A TIME ... 

I was a boy scout.  

And while this was nearly 50 years ago, I will never forget the motto found in the official scout handbook "Be Prepared".  

While my scouting merit badges and medals were stored away long ago, I have lived my life by this motto.  I have tried to anticipate problems that might arise, and then prepare for it.  I admit that sometimes this has become an obsession.  I have to constantly remind myself that one can't prepare for every possible situation.  But taking this view of life has paid benefits when faced with the challenges of parenting a special needs child.

When my daughter Melissa was diagnosed with a rare metabolic disorder, the medical community was just learning how to best manage the condition.  Following her neurological trauma at four days of age, the doctors were unsure about the long-term impact.  They knew there was brain damage, but had no idea to what extent.  Would she ever walk?  Or talk?  Or be able to care for herself?  At that time, only God knew the answer to these questions.  

Over the past 20+ years, we have discovered that managing Melissa's health and her development required a lot of advance planning.  We always had "Plan B" when we traveled, because we could not count on the airlines to deliver us to our destination on time.  We obtained a "treatment letter" from her physician and a Medic Alert bracelet that would provide guidance for emergency room personnel in the event that she became ill when we were away from home.  We tracked her medications diligently.  And we became advocates for her education and special therapies.  We credit this advance planning with her ability to "beat the odds".  Today she is one of the oldest (longest surviving) people with her specific metabolic disorder.

When Melissa was little, it dawned on me that no matter how prepared I might be to help her, the day would come when I would no longer be there.  That day might be long into the future; or it might be on the drive home from work ... the result of some unexpected tragic event.

Had I prepared for Melissa's continued care if I was gone?  The answer was no.  

Have you asked yourself this question?

You might answer -- I have other children and they will take care of my special needs child.

If this is your response, then I suggest you might want to re-think your plan.  Your other children have their own life.  Do you really want to put this responsibility on them?  As you have discovered, managing someone with special needs is life-changing.   And that care is expensive.

Your response to this might be -- I have life insurance and my child can use that when I die.

Maybe so, but there are other things that you must consider beyond money.  Disabled adults require special care.  They may need a guardian to help them make important decisions.  They may need someone to help them with daily living skills and medications.  These services are offered by public assistance, but only to those who "qualify". 

Disabled individuals qualify for certain public benefits that are designed to support their living needs and their medical needs. Programs such as Supplemental Security Income (SSI) and Medicaid offer a minimum level of support and to qualify, the individual must have virtually no assets.  So if you set up a savings account for them to use when you are gone, or if you leave them a house to live in, those assets may well disqualify them for the public assistance services they will need.

Our solution was the creation of a "supplemental needs" trust. 

A trust is a legal "entity" that is formed to own assets such as cash, insurance policies, or in some cases real estate.  Supplemental or special needs trusts are unique in that they are created expressly for the purpose of providing resources for the beneficiary (your child) based on some set of circumstances (such as if you die). And by law, the assets held in these trusts are excluded from the beneficiary's assets so that they can qualify for public services. 

Special needs trusts are complex and should be designed by a qualified attorney. 

We established a supplemental needs trust for Melissa long ago.  But then the question became, how to "fund it".  The solution came from a friend who is a broker and also the father of a special needs child.  Our approach was to have the trust purchase a second-to-die life insurance policy on both Kathy and me that funds the trust when neither of us are there to support her  We found the policy very affordable.  We made the maximum annual contributions to the trust each year (avoiding the gift tax) until the value in the policy ensured that the premiums would be paid for the rest of our lives.  That being done, we no longer have to worry about where the money to support Melissa will come from when we are gone.  We are now PREPARED.

In 2004, the Minneapolis St. Paul Business Journal wrote an article about my broker/friend's planning strategy for parents with special needs children.  Here is a link to the article. 

There are many other considerations if you are planning for your special needs child's future.  This is just one of them.  An updated Last Will and Testament for you and your spouse is also a good idea so that you can direct the care of your child after your passing.  Planning for legal guardianship is also a good idea so that when your child reaches the age of majority (18) you can continue to provide oversight and guidance.   

Thinking about these things is never easy.  But once they are in place, you can rest easier knowing that your loved one who survives you will be well cared for -- just like they would be if you were there.

PEACE

Adapted Athletics Gets an A+

We have all been to high school.  Some of us participated in the school's sports programs.  We all know that the "athletes" who walk the halls brandishing their Letter Jackets are often viewed by others as top performers.  Their stature and self-esteem is boosted by not only their personal achievements, but by peer acceptance and support.  And if you are a parent of a high school sports participant, you know how gratifying it can be to watch them mature as they excel in their chosen activities.

As a parent of a student with a disability you realize that they might also benefit from participation, but all to often they are excluded. Sometimes the exclusion is for valid reasons such as for fear that they might become injured.  Other times the exclusion is more sinister.  Athletic directors are focused on fielding the "best" athletes and "winning" for their school's program.  Having disabled students on the team would undermine those objectives.

In Minnesota we solved this problem with the launch of the Minnesota State High School League Adapted Athletics Program.  In November 1992, the Star Tribune newspaper reported:  "In an emotional and unanimous vote, the Minnesota State High School League welcomes athletics with disabilities into its family." 

The Adapted Athletics program, artfully designed with input from coaches, educators, former players and high school league officials, provides disabled students with a unique opportunity to participate in a wide variety of sports.  Not only does participation help these students strengthen their physical abilities, it offers a powerful tool to help build self-esteem. 

The program focuses on giving student athletes the opportunity to discover and/or improve their individual skills in:  goal setting, pride and self-confidence, friendships, leadership and teamwork, competitiveness, graciousness (win or lose), physical conditioning/wellness, concentration and intensity, a sense of community and belonging, and commitment and dedication.

Adapted Athletics offers two programs:  PI (physically impaired), and CI (cognitively impaired).  All sports are held indoors and include Adapted Soccer, Adapted Floor Hockey, Adapted Softball and Adapted Bowling. Teams compete at regional and state levels.  Participants are recognized for outstanding achievement.  All participants earn "letters" in each sport. 

This program works.  I know because my daughter Melissa participated in adapted athletics starting in seventh grade and continued through high school.  She played each sport and improved noticeably each year.  In fact, during her junior year, her bowling team won the State Championship. 

I have found no greater joy in life than watching these athletes play.  They give it their "all".  They have fun ... win or lose.  And maybe most importantly, they are recognized by their non-disabled peers.  I've seen many of those athletes befriend Melissa something that may not have happened had she not participated in the program!  Here is her graduation picture taken with her coveted letter jacket--something she still wears today!

If your child's high school does not offer an Adapted Athletics program, point them north to Minnesota to discover the success we have achieved.  For more information, follow this link to the Minnesota Adapted Athletics Association

I give Adapted Athletics a grade of A+.  Get it into your school today.

Don't Bully my Baby

As a father of a special needs child, I am constantly on alert for symptoms of bullying.  We know that children with disabilities are "different" and this often becomes a lightening rod for those children who seek out the weak and prey on them!

When my daughter Melissa was 12 and in seventh grade (2000) she came home one day and told me that some kids at school were calling her names.  I was enraged.  How dare these punks make fun of my baby!  We made the standard phone call to the school, alerting them to the situation.  But I feared that while they may try to correct the situation, those efforts might fail.

So I decided to take matters into my own hands.

Nothing impresses young punks like motorcycles.  Bikes are cool and the assumption is they are ridden by "tough guys".  Just so happens that at this time I owned a Harley Davidson.  It was LOUD and it was fast.  Melissa loved to ride with me.  So this gave me an idea.

I told her that rather than ride the bus home, I would pick her up at school the next day.  You guessed it ... i took the HOG.  I arrived at the school before classes were dismissed.  I parked right in front so that all the kids coming out would see me there.  The bell rang and kids started streaming from the front door.  And there was Melissa.  When she saw me sitting there on the bike, her eyes lit up.  She came over, put on her helmet, and we soon roared down the driveway as she waved goodbye to her friends.  It was quite a spectacle.  Every boy standing there saw Melissa on that motorcycle.  And they saw her "bad-ass" Dad with her!

Suffice it to say that the teasing stopped. 

Bullying in school is now news.  I recently saw one story about a father whose daughter was being accosted on the bus and he lost his cool, and after confronting the kids on the bus, was arrested and now faces criminal charges.

One reason the media has focused on this issue stems from a recent letter sent by the U.S. Department of Education to schools, colleges and universities, offering them guidance regarding harassment. The guidance focuses on legal obligations to protect students from student-on-student racial and national origin harassment, sexual and gender-based harassment, and disability harassment.

It was great to see that children with disabilities was included. 

As a father whose mission is to protect his vulnerable child, what can be done?

I do not endorse trying to handle things personally.  That will only lead to trouble for you and if you are in jail, then who will be there to protect your child?  A better approach might be educating and then communicating with your kid.

Some children with cognitive impairment have difficulty recognizing when they are being harassed. To help them better recognize when they have become a target, I believe that the process begins with education. We often look to schools to offer this, but sometimes that just doesn't happen.

I found this great web site that offers a number of powerpoint presentations that help you Talk About Bullys.  Depending on your specific situation, you might find some ideas here that could help broach the subject of bullying with your child.

Once they recognize a bully, then they are better equipped to avoid them--or report them if they become a target.

When I saw the recent news reports on bullying, it brought me to ask Melissa about her own experiences.  We have had the conversation in the past and she understands about bullys.  And I have assumed that she would tell me if she was bullied.  But I had long forgot that conversation.

I asked her, "Melissa have you been bullied?"  Her answer was "No, Dad".  Good thing, because I sold that Harley years ago.

PEACE

Magnificent Make-a-Wish

Make-A-Wish has granted over 200,000 wishes to children since its beginning in 1980 when it granted one boy's wish to be a police officer.  Today, the foundation reports granting a child's wish in the U.S. every 40 minutes!

The organization serves children 2½ through18 who have a medical diagnosis with a life-threatening medical condition – i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy.  After determining a child's eligibility, a volunteer is sent out to meet with the child and discover their one true wish. 

Common wishes are for trips to Disney, popular cities or even foreign countries; to travel and see far away family or friends; to live exciting careers; to receive special gifts such as play sets; or to meet famous people.  The wishes are as varied as you can imagine.  And the foundation magically makes them happen.

When my daughter Melissa was 16 (2004) we heard that other children with metabolic diseases similar to hers had qualified for a Wish.  We investigated the program and discovered that because of the life-threatening nature of her disorder, she qualified.  We applied and she was accepted.

I remember how exciting it was to sit down with her and explain the program.  We then had a long talk about what she might ask for.  We explained what other kids had received, but since she was already a "teenager" she had other ideas. 

The day came when the Make-a-Wish volunteer arrived at our door.  We all sat in the living room and she explained the program to Melissa and asked if she had decided what she wanted.  To our amazement, Melissa had come to the decision that she wanted to meet "teen idol" Hiliary Duff who at the time was the star of Disney television series Lizzie McGuire.  Hiliary had since branched out into movies and music.  While just a year older than Melissa, Hiliary was packing them in at concerts across the country. 

At hearing Melissa's wish, the volunteer smiled.  We were lucky because Hiliary was one of a small group of entertainers who regularly worked with the foundation.  Even more amazing was that Hiliary had an upcoming concert right here in Minneapolis. 

Make-a-wish did a great job orchestrating the event.  Melissa was given six front-row tickets to the concert.  She invited her mom and a small group of her best friends.  A big black stretch limo arrived the evening of the concert and carried them all downtown. 

Melissa received a special back-stage pass and had the opportunity to meet and talk with Hiliary before the concert. You can only imagine her excitement. Here they are posing for a once-in-a-lifetime picture.  Hiliary was great.  She was patient, asked Melissa a lot of questions and made Melissa feel totally at ease.

The best part was yet to come.  As Melissa and her friends sat in the front row enjoying the concert, Hiliary gave them a "shout out" between songs.  In that moment, they became part of the concert themselves.  And while it may seem a bit trivial, Hiliary gave Melissa a special gift that she will never forget.

Wishes are forever.  Even though this event happened six years ago, Melissa can tell the story as if it happened yesterday.  Make-a-Wish is truly Magnificent.  If you have the opportunity, please support their fine work generously.

PEACE

The Gift of Texting

Many individuals with cognitive impairment have auditory processing issues.  That is to say that their brain can't keep up with the "pace" of a face-to-face conversation.  The result is that they either avoid conversations or if they make the attempt, they struggle with often less than desirable results. 

My daughter Melissa has this issue.  As a result of her initial neurological assault when she was four days old, her brain was injured and she has auditory impairment.  When she was young, she avoided interactive conversations.  She would keep her head down and avoid eye contact which is the common signal for engaging in a verbal conversation.  She has had considerable speech therapy which has helped some ... but the processing capacity of her brain has never improved.  She can communicate with us but formulating expressive conversation is a challenge.

Several years ago we bought Melissa a cell phone.  Our idea was to keep her in communication with us while at school, work, in-transit on the bus, at friends houses, etc.  Little did we know that what we had really given her was a powerful expressive communication tool!

As you know, the process of texting is the formulation of a message which is sent and then responses received.  The "pace" at which a texting conversation transpires is determined by the speed at which the sender and receiver exchange messages.  There is no face-to-face pressure to respond immediately to a question.  With texting, the person receiving the message can take as much time as they like to "process" the information and formulate a response. 

Melissa is now able to freely communicate her thoughts to us ... via texting.  She composes messages that contain questions and thoughts that frankly we never knew were captured in her brain struggling to get out! Via texting, she can tell us about her fears, concerns, wants, pains, and a lot more.  As she started to use this new communication medium to "speak" with us, we were amazed at the depths at which she was thinking.  Because she hadn't been able to tell us before, we had no idea that she had these thoughts.  Now her inner world was open to us.

She fully understands the power that texting provides.  In fact, she has started to bring a note tablet along with her when she is going to be around others who themselves have a similar auditory issue.  They use the tablet for real-time in person texting.  It is amazing to watch them communicate (and even sometimes read what they wrote on the tablet to get an idea of what kinds of things they are dealing with).

The moral of the story is that if your child is challenged with expressive speech, consider a Gift of Texting.  It will open a whole new world for them (and for you as well). 

One final note.  When selecting your mobile phone plan, make sure to elect the "unlimited text" option.  Melissa averages about 3,000 text messages a month!

PEACE

The Work Impact

Depending on the severity of your child's special needs, your work life will be impacted.  Over the past 20+ years I have thought about this often.  What is the impact on both my job and my wife's as well?  Here are some thing where I believe we all have some exposure. 

MEDICAL COSTS.  If you have a family health insurance policy at work, your child's claims under that policy might have an impact on the future rates charged to all members of the group.  This is because some policies are based on actual experiences and as claims rise, so do future rates.  If this happens to you, could your continuing employment be seen as a liability?  If the employer ever acted on such a thing it might be construed as discrimination, but who wants to deal with all of that? 

SOCIAL STIGMA.  You have discovered that in your private life, friends and even family are afraid to interact with you because they are uncomfortable with the whole health/disability issue.  They don't know what to say; how to act; or are afraid that you might ask them to help with your child.  When this happens at home, you can deal with it.  But what if this happens at work?  What if it is your supervisor or fellow-employee who can't face you?  Sometimes such a situation can limit career advancement -- or even put your employment at risk.  Most jobs generally require that you work with others.  If they won't work with you, how can you perform the job? 

TRAVEL.  You can't be two places at the same time.  Many jobs require travel.  Some more than others.  And many special needs children require hands-on support from both parents.  When work demands you travel and life demands you be home, what can you do?  If you refuse to travel, your job is at risk.  If you leave home, are you shirking your responsibility as a parent?   

JOB FOCUS.  Every day of parenting a special needs child brings another challenge.  Even if your spouse is handling them, as a father you are expected to provide advice, support and encouragement.  And since by definition a crisis can't be planned, they are likely to emerge during work hours.  These distractions can lower productivity, increase the frequency of absences, cause more work errors, and can negatively impact overall job performance.  This is a particularly important area that fathers should watch because they all are legitimate grounds for job dismissal. 

FINANCES.  Even with insurance coverage, your special needs child will be costly.  This may result from having only a single income (your spouse stays home to care for the child).  Or it may result from medical costs beyond your policy coverage.  Employers are constantly on the watch for employees who might have financial struggles because sometimes those employees become a risk (theft, violence, other behavior issues).  If you are changing jobs and your credit score has been down-graded due to financing challenges, you may find that this becomes a red-flag with prospective employers.  

These factors are daunting, but need not be fatal.  I have found that many of these issues can be avoided by adopting one simple philosophy -- be OPEN about your situation.  By this I mean that rather than keeping private your situation as the father of a special needs child ... promote it.  

With nearly 30 years of experience in marketing, I have found that a very effective method of promotion is through EDUCATION.  This is because through the process of learning, both your awareness and sensitivity are increased -- which is exactly what you want to accomplish.  There are a couple of basic approaches that you might want to consider.  

A more formal approach could be used in larger organizations.  If your company has an employee newsletter, consider offering your story to them.  They can interview you and then publish your story as an "employee overcomes challenges" storyline.  The company benefits by being sensitive to employee issues.  This also serves to put management "on notice" regarding any possible issues that result from your challenges.  If the article promotes a tolerant workplace, then it would be difficult for them to later penalize you in these situations.

When the formal approach won't work, consider handling the promotion yourself.  You could try to get a story published in a newspaper, magazine, or even online.  In the workplace, the promotion can start in a place where lots of employees and managers gather (such as a lunchroom).  Take a trusted friend with you and start a conversation about your situation ... speaking LOUDLY.  Others will be listening to the story, giving you the audience you need to accomplish your education mission.  

Whether formal or informal, your employer will benefit because an educated workforce spends less time gossiping and being distracted by the challenges of others in the workplace.  Your co-workers benefit because they now understand your situation and can discuss it with you or offer support without fear of saying the wrong thing.  And of course you benefit by minimizing the downside and possible impact that being a father of a special needs child can bring.  

I am sure that there are other areas where a father might be at risk in his job ... and other ideas that you might have to reduce or eliminate this risk.  Please share your thoughts and experiences with our group.


PEACE

Dreams Lost

While few men would ever openly admit it, we all have "dreams" and aspirations for our soon-to-be-born offspring.  Will it be a boy or girl.  I think most guys want a boy because we can relate more easily.  After all, we were all boys once.  And there is some comfort in knowing the ropes (and the equipment that boys come with).  We dream about all the things a father does with a son ... those special one-on-one times that may fade from your memory but never disappear. 

Believe it or not, I actually was hoping for a girl.  Part of the reason was that my family had 3 boys and I always felt I missed something not growing up with a sister.  Yea, I know ... you guys with sisters are laughing out loud thinking little does he know!  Wishing for a daughter brings a different set of dreams and aspirations. Will she be smart?  Beautiful?  Talented?  How will I feel when I walk her down the aisle on her wedding day?  How many grand kids will she give me?  It may sound strange, but its true (at least for me).  

My sweet Melissa only hours old

No matter which you are hoping for, one thing that never even enters your mind is health. Because most babies are born healthy we rarely deal with the realities of birth-defects and the impact that they bring to a family.  As fathers of a disabled child we are all well aware of this reality.  And when it happens to us, our dreams are replaced with disappointment, fear, resentment and even anger.  

When Melissa was only 4 days old she fell into a coma.  Fortunately we had not brought her home from the hospital and they were able to aggressively treat her which ultimately saved her life.  I'll spare you the gory details, but what I remember most was sitting next to her "bed" (actually a platform under warming lights) in neonatal ICU with tubes running in/out of her and doctors and nurses hovering around her speaking in a language that was foreign to me.  This went on for several weeks.  Finally Melissa was stabilized and we were able to bring her home ... all 4 pounds of her! 

As I sat in our rocking chair holding and feeding her I couldn't help but feel sorry for myself.  She survived, but the doctors were not optimistic about her future because she had experienced brain swelling and likely damage that would affect her for the rest of her life.  Now rather than celebrating my new daughter, all I can think about is ... how can I raise a child that may not be able to function like other kids.  

One element of my personality that I've placed a high value on is my intelligence.  I always imagined that my child would share that gift and together we would enjoy our own special intellectual connection.  Now that would never be a reality.  My baby's brain was injured and nobody could tell me what the impact might be.  It wouldn't be until nearly20 years later that I've been able to create a connection with her -- on a different, but very special level.

Share with us what dreams you had and then lost when you learned your child had a disability.  Have you been able to replace those dreams with others?  It can be done.

An Unforgettable Moment

If you have a child with special needs you will never forget the moment that you learned your life would change forever.  For me, that moment came 21 years ago when my daughter was 5 days old.  She had been in a coma for two days and was in neonatal ICU fighting for her life.  Her doctor came to us and explained that our baby had a rare, life-threatening, incurable metabolic disorder!

Our sweet Melissa the day she was born.

Like every other parent hearing a similar diagnosis, I was stunned.  My wife Kathy had an easy pregnancy and there was no history of similar disorders in either of our families.  We were taken totally by surprise.  We were also first-time parents and understandably nervous, but our uncertainty quickly turned into confusion, fear and ultimately anger. Neither of us knew anything about medical procedures or management of complex diseases -- so how could we care for this sick child?  The news also shook our Christian faith.  Had we done something wrong and was God punishing us? We took comfort in the words of Mother Teresa who said ..."God doesn't require us to succeed; he only requires that you try."  And try we did.

This was the beginning of a personal journey.  So long ago there was little advice available to help me find my way.  Even today there is a void.  While there are many books, articles and even blogs written about parenting special needs children -- these are written by talented, dedicated women and I find that they typically offer a mother's perspective. 

In future posts I will explore those emotions and how they impacted my marriage, my lifestyle, my career, and my future. Some topics will be challenging, but challenges are what special needs children are all about.

Let us make this an interactive forum.  I challenge you to participate in this discussion by sharing your own personal views and experiences.  Together we can become better fathers for our special kids.

PEACE