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