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