Lessen the Burden

Photo: The Vanderbilt Kennedy Center

Since discovering Melissa’s medical disability and special needs, it seems that as I think about the future, my mind inevitably wanders to the day when Kathy and I are gone and she is “on her own.” And since she is our only child, I often wonder if things in the future might be different if she had a sibling.

Having a brother or sister with a disability is not something new. In fact, as long as there have been disabilities, there have been siblings whose family is affected. But this generation is faced with some new challenges.

In years past, the disabled were often cared for in an institutional setting after their parents or primary caregivers passed on from this life. In these environments, the disabled individual’s needs were fully cared for. But today, many disabled adults are living in semi-independent facilities. This is an excellent structure because the social support system can provide the basic support and the family can supplement that support based on their loved-one’s needs and their own ability to provide for them. But where this approach can break down is upon the passing of the primary caregiver (e.g. parent) which can create a void that needs to be filled.

This void is apparent to me because without an immediate family member to step in (a brother or sister) we have had to reach out to others who love her; who will likely survive us; and who are willing to embrace the role of overseeing her care within the social services system. Our goal has been to make preparations with the hope that we can lessen the burden on her future caregiver.

These same preparation techniques can serve parents with multiple children who will likely one day assume some level of responsibility for their disabled brother or sister. Some things that I try to keep in mind …

• Respect the Caregiver’s Life. As a parent, we brought forth our disabled child and have committed our life to them. But not so for the caregiver. We must not forget that their support is a “gift” and we must respect their time and resources.
• Promote Independence. By promoting independence to the greatest extent possible while retaining safety and security, we lessen the future dependency on a caregiver.
• Maximize Social Support. Even when parents have the ability to provide fully for their special-needs child, they should identify and leverage each and every possible support resource available—whether it is income, health-care, or social. Integrating the child into the “system” prevents passing this often difficult task to a future caregiver.
• Document Expectations. While it is not possible to define your wishes for your child in absolute terms, you can certainly create a list of things that you would like to ensure that your child receives when you are gone. This can be very important if the child has issues with self-advocacy or communication and is not able to articulate their needs/wants.
• Provide Financially. Asking someone (another child or third-party) to accept the role of caregiver for your child is one thing … but expecting them to provide financial support is another. Our use of a special needs trust that will provide Melissa with the “extras” in life that she appreciates (and expects) is designed to address this important issue.

Let us prepare today so that we can Lessen the Burden on our special needs child’s caregiver tomorrow.

PEACE

You Don’t Know That

The conversation goes something like this …

Melissa says, “Dad, tomorrow I want to go on a picnic with my friends.”

I’ve just finished watching the evening news and weather report. They said that it is going to rain all day tomorrow. So my response to her is, “the TV just said that it is going to rain tomorrow”.

She instantly replies “you don’t know that.”

Over the past couple of years, this has become the de-facto standard response when Melissa doesn’t like what she is told. Truthfully, I’m not sure if she doesn’t hear me clearly; doesn’t understand what I said; doesn’t like the answer she got; or is simply rebelling.

Regardless of the reason, each time I hear that response it makes me think about how I can best prepare her to make her own decisions. I know they won’t be major decisions—because she will always require some degree of supervision.

But I feel the need to impart my “wisdom” to her. I want to help her learn from my mistakes so she won’t have to make them herself. Through my life experiences,  I really DO know that.

Through my trial-and-error attempts to address this challenge, I have discovered that Melissa can best “relate” to these decision-making situations if she has previously experienced them herself.

So in this case I say, “Melissa, do you remember the last time it was supposed to rain and you went bike riding anyway?” She sheepishly replies yes. Then I ask her to recall what happened.

“I got wet” she said.

Then I offer, “So don’t you think you might get wet again if you go on a picnic when it is supposed to rain?”

This is usually followed by stark silence. I know she is thinking about it. I don’t rush it. I let her be the next to speak.Sometimes there is no response at all … but I later discover that she has cancelled her picnic plans. Other times she will push-back again. “It might not” she would say.

And of course she is right. It might not rain. How many times does your weather forecast actually come true? And if she cancels and it doesn’t rain … then who looks like the fool?

What I’ve learned through this whole interaction is that she actually is right … I don’t KNOW that.

Now each time we have such a discussion and she utters those words to me, I can only chuckle and think to myself—do I or don’t I know that?

How do you help your child in their decision-making challenges? 

PEACE

Starry Night Prom

Over a decade ago, the Lasallian Ministry at DeLaSalle High School in Minneapolis had a wonderful idea. The students and staff would come together and “host” a gala evening of music, dancing, food, and fun for people living with disabilities.

The event is modeled after a high school “prom” but unlike the traditional formal dance where people with special needs often feel uncomfortable and out-of-place … this prom has been created just for them! And for the guests, it’s free!

To say that the Starry Night Prom has become popular is an understatement. In 2010, the school hosted over 600 guests. Rumor has it that the event, held last weekend, pushed attendance to nearly 1,000. Let me tell you a little more about the event.

The Hosts. Half of the DeLaSalle student body (about 200 students) work for months planning and preparing for this special evening. They raise money, make decorations and plan the refreshments. Most importantly, they attend seminars and sensitivity training so they are comfortable and able to appropriately interact with their guests. When the day arrives, their hard work transforms the school gymnasium into a fantasy land. In the early years, music was provided by a D.J. but now they have a live band.

The Guests. The event is open to people of all ages living with a disability. And while there are a few teens and young adults, the event brings out the older community as well. Some live with their parents and others in group homes. They arrive by car, bus, and even in limos! Some dress to the nines; others a little more casual. But one thing they all have in common is that they are there to have fun!

This year marks the ninth time Melissa has attended the event. She marks the date on her calendar and she and Kathy make “mom and daughter” plans. It starts with the “dress hunt” and ends with a day of beauty … hairs, nails, general pampering. Then the time arrives.

The Evening. I’m not sure how other families do it, but for the past few years our family and some of Melissa’s friends have a pre-event party and a limo ride to the event. One family hosts the get-together where they snack and chat. Then the limo arrives. The party goers head to the curb and toast with their sparkling (non-alcoholic) beverages. Did I mention the pictures? Every family is snapping their camera to capture the moment. Ever anxious to escape (from their picture-crazy parents) they pile into the limo, crank up the music, and their long, sleek chariot that whisks them away for their evening of fun.

After a short cruise around the city, they arrive at the school. They pour out of the limo and enter the school where they are warmly greeted by their host students. More pictures and then its off to join the Grand March. No date? No problem. Guests who come alone “march” with a host high school student (host girls will escort guest boys, and vice-versa). Should I mention how excited the guests are to be escorted?

Once in the gym the party starts. Friends gather at tables (that their parents have ‘reserved’ for them as much as an hour before their arrival. The music starts. Food and drink are consumed. And everyone has a wonderful time.

Our group of friends then head over to have a late dinner–the parents in one area and the young adults in the other. The laughing and joking continues. Exhausted, our family heads home … where Melissa marks the calendar for next year’s event.

PEACE

Why Me?

“What doesn’t kill you makes you stronger”

Friedrich Nietzsche noted German philosopher (1844-1900) offered this bit of wisdom which I have come to embrace as my personal world view … my attitude about my life.

My perspective is that while “bad things” seem to happen to me, I have the ability to embrace them as an opportunity for personal growth. Let me explain.

Two decades ago when we got the diagnosis that Melissa has a life-threatening metabolic disorder and permanent brain damage, I asked myself many of the questions that we have all pondered.  Why have we been given a child with a chronic illness? What have we done to deserve this?  WHY ME?

I spent years lamenting our situation. But now I’ve learned that that the birth of our special needs child was not a punishment or an incredibly bad stroke of luck, but rather was a GIFT … an opportunity to make a difference in the world.

That might sound strange, but here’s how I came to this conclusion.

As humans, we are only able to see the present and the past. Our world view is therefore shaped by what we have experienced. But as I have grown older (and I would like to think wiser) I’ve come to believe that God has a plan for each of our lives. Since we can’t see into the future, we must have faith that God will guide us and protect us through our life journey … no matter how daunting it might seem on any particular day. And over time, as we experience life, the purpose of this plan will be revealed to us.


As evidence of God’s plan at work in my life, I offer our experience with the Organic Acidemia Association (www.oaanews.org). In 1997 my wife Kathy and I assumed responsibility for this fledgling organization that provides information and support for parents and professionals caring for children with metabolic disorders like our Melissa has. Over the past decade, the work of this organization has touched the lives of hundreds. While one might argue that if we had not taken the reins of this support group, someone else may have accomplished the same (or maybe even more). But we’ve come to believe that Melissa was given to us to put us on this path—so that we might help others through their own journey.

If you are interested in an inspiring book, I recommend What Doesn’t Kill You Makes you Stronger: Turning Bad Breaks into Blessings by Maxine Scnall, published in 2002. In her book, Ms. Scnall offers a glimpse of how people have pulled through a terrible situation or have used creative problem-solving when all hope seemed lost. She recounts her own experience about how she dealt with her daughter’s brain injury from an accident.

I hope that each of you will consider how the challenges presented to you through your special needs child can be embraced as an opportunity for personal growth.

PEACE

Journaling as Therapy

Journaling is the process of writing about one’s life events and feelings.

It’s a widely recommended self-help tool.

And it costs nothing except a little time from your busy day.


There’s something magical that happens when you put pen to paper. A link is established between your hand and your brain. Thoughts that had been trapped deep inside your subconsciousness come spilling forth. And when they are written down, these thoughts, fears, and even great ideas can truly make a difference in the quality of our daily lives.

Personally, I’ve found that the process of writing in a journal to be highly therapeutic . It amazes me that when I write something down, I am forced to think about what I want to say … and that thought process brings forth many things that I might not have otherwise considered. And because the journal is private (like a diary) I’ve been able to reflect on my deepest feelings and fears.

A side-benefit of keeping a journal is that you will soon have a transcript of your life.  I often look back at my own journals from when Melissa was young and it reminds me of the challenges that we faced—both medically as well as emotionally. I can read about those days long ago when I thought things might never improve … wondering how I would ever survive the challenge.  I can also recall my fears for her life and can now see how my own fears caused me to “awfulize” about her medical condition … imagining that it was worse than it really was.

If you and your spouse are “communication-challenged” then journaling can be a great tool to help you express your inner-most feelings … words that you couldn’t otherwise speak. If you share your journal with your partner, your parents, or your best friend, you’ll be surprised how easy it becomes to talk.  Your journal becomes a conversation-starter.

I don’t think there is a “right” or “wrong” way to journal. The process used will be as unique as the person who does it. It will be challenging at first, but if you stick with it, you’ll soon find your groove.

Here’s some tips that might help you get started.

Forget the Computer – Write in a Book. This might seem strange advice from a blogger to an audience reading on a computer … but I find that there is something special that happens with the written word.  So get a spiral-bond notebook, a pen, write the date at the top of the first stage and you’re on your way.

Pick a Time and Place. We’re all creatures of habit.  Find an ideal time when you can devote 15-20 minutes to journaling.  It might be while having your morning cup of coffee; or just after you put the kids to bed; or maybe before you go to sleep.  Getting into a routine will help you focus and keep going. You might even look forward to that time each day!

Keep Reminders.  When you sit down to write, remembering topics to cover will often be a challenge. Just get a little  notebook and write down words that will help you remember the situation.  That’s what I do for this blog.  And that’s how I came up with today’s topic.

Don’t Quit if You Miss a Day or Two. There is no rule that you have to journal every day.  If you miss a day, so what? This is for you … so do it as often as you can.

Read Your Last Entry Before Writing the Next. I’ve found that re-reading what I previously wrote helps get me“in the mood” to write. It can also help you reflect on what’s happened since then.  Have things improved?  Gotten worse?  Starting where you left off also helps create a continuum of thought, even if it has been weeks since journal entries.

Go Deep—Don’t Hold Back. The journal is for you, so don’t hold back. Don’t worry about hurting anyone’s feelings. Just let go and tell it like it is.

Keeping a journal can be an eye-opening experience. It can also become a family heirloom.  So pick up a pen and start writing.

PEACE

Family Game Night

My wife Kathy and I have played games with Melissa for nearly 20 years. We started by assigning a specific night of the week when we would clear the calendar and devote an hour or two to playing games. Sometimes we played board games. Other times we played more physical games.It wasn’t long before Melissa came to cherish this family time. She could be the center of attention and have fun. If we tried to skip a night, she would let us know that she wasn’t happy about it.

I’ve come to realize that not only were these games entertaining, but they helped Melissa grow and learn in some very important areas.

SOCIAL SKILLS.  Appropriate social behavior is a challenging concept for any child, and seems to be even more difficult for our kids. You can’t rationalize with them. And you can’t be present for every “teachable moment” when you can use their actions to help guide them about what is correct and incorrect behavior. I’ve noticed that game-playing has instilled strong positive social skills in Melissa. Through game-playing, she’s grasped the concepts of turn-taking and following rules—both vital skills for appropriate social behavior.

STRATEGY DEVELOPMENT. Effective game-playing often calls for use of a game strategy. For example, in the game of SORRY, the player sometimes must decide which competitor game piece to send back start … and of course the optimum selection would be the game piece closest to home. While we take this process for granted, it is complex decision-making. After selecting the wrong piece (and losing) Melissa quickly figured out the strategy which she now uses very effectively!

RANDOMNESS and CHANCE. The concept that some things are out of our control is nearly impossible to teach without an example. Game-playing demonstrates this each time you roll of the dice, select a playing card, or spin the spinner. Your child sees that they can’t control the outcome … and must deal with the results.

MOTOR SKILLS. Melissa has issues with both fine and gross motor skills as a result of her medical issues. Moving board game pieces, shuffling cards, and similar actions are a great way to exercise fine motor skill development. Physical games such as shuffleboard, bowling, darts, croquet, and bocce ball can help improve coordination and gross motor skill development.

EMOTIONS. Nobody likes to lose—it’s a disappointment. And we know that life is filled with disappointments. Temper-tantrums are a common reaction to disappointment. Game-playing can help address this issue by demonstrating the appropriate way to handle the disappointment (of losing). By setting a good example of being a “good sport” we offer positive reinforcement and teach appropriate techniques for controlling one’s emotions.

And what about the computer? Melissa has used the computer since she was three years old. At that time, we purchased software for our MAC that used game-playing to reinforce her counting and spelling skills. It worked remarkably well. When the computer is used in this mode, it is a “personal” device and isn’t a substitute for Family Game Night. However, new gaming technology, such as the Wii has expanded computer-based games to include other players … which are better suited to the skill development a parent might seek from game-playing.

Game-playing is an educational experience. It helps develop a competitive nature and desire for winning. And it helps deal with the disappointment of losing. If you aren’t playing games together, I urge you to consider making it a new family ritual.

PEACE

Circle of Friends

Each person develops a circle of friends throughout their lifetime. Friendships are formed through our personal interactions. These may stem from our childhood, our neighborhood, our workplace, our church or from a variety of other sources. We select our friends based on our common value-system, interests and world view. Over time, friends are added and removed from our circle. It is a natural occurrence that we mostly take for granted.


As a parent of a special needs child, we develop a unique circle of friends. Many of our friends are parents of other special-needs children that may be our child’s friend or participate with our child in any number of activities. You might also create a circle of friends surrounding your advocacy for a cause that you care deeply about.

For the past two decades, my wife Kathy and I have developed a number of these circles. Today I would like to address just one … the Special Needs Parent Circle.

Many children with special needs are challenged with social and interpersonal relationships. They have difficulty establishing close and meaningful friendships and often struggle to maintain them. We’ve learned that most of these kids develop friendships through school, sports, or other special activities. And in many cases, the parents of the kids meet one another as they attend these events.

Sometimes that meeting results in a closer friendship among the parents. I’ve found that when you befriend the parent(s) of your child’s friend, a special bond is created. This is probably because you are walking a similar life path. And that commonality lets you share information and anxieties. Unlike your relationships in other circle of friends, these people can relate! And together you can represent a formidable unified voice when school or other issues don’t meet your kid’s needs or your expectations. And you can even share caregiving, providing the other family with much-needed respite. And we’ve found that when the families bond, the underlying friendship of the kids grows ever-stronger.

Sometimes that meeting results in nothing between the parents. There are many reasons why this happens. You may have a dissimilar world view. You may find that these adults don’t share your value system or morals. You may not respect their decision-making or even their parenting style. But whatever the reason, you don’t form a bond. We’ve discovered that when this happens, the underlying friendship of your child and their friend may suffer. It seems clear to me that establishing a circle of friends that includes other special-needs parents adds real value for your child and their social skills development. But there can be a dark side as well.

What if you end a relationship with their friend’s parents? The most challenging element facing special-needs parents who are friends comes if/when that friendship comes to an end. Does it also spell the end of the children’s friendship? I’ve found the answer lies in the manner in which the parents end their friendship. If the friendship ends because the individuals drift apart (new/different interests, moving from the neighborhood, etc) then the kid’s friendship can continue. But if the parents friendship breaks down because of a disagreement, then maintaining the kid’s relationship becomes nearly impossible. And that’s a shame because it isn’t the child’s fault, yet they can lose a good friend in the process! This has happened to us. And while we feel bad about it, it was unavoidable.

Have you developed a circle of friends that includes other special-needs parents? Have you found that these relationships are of value? Have you lost any of those friends? If that happened, what was the impact on the kids?

My hope is that this insight somehow helps you be a better parent and helps you empower your children to build and nurture their own circle of friends.

PEACE

The Cab Ride

Today I offer something a little different — a story that I read a few years ago that makes me search for those special opportunities where I might do something that improves the life of just one person.

The Cab Ride (Author Unknown)

Twenty years ago I drove a cab for a living. When I arrived at 2:30am, the building was dark except for a single light in a ground floor window. Under these circumstances, many drivers would just honk once or twice, wait a minute and then drive away. But I had seen too many impoverished people who depended on taxis as their only means of transportation. Unless a situation smelled of danger, I always went to the door. This passenger might be someone who needs my help, I reasoned to myself.

So I walked to the door and knocked. “Just a minute” answered a frail, elderly voice.

I could hear something being dragged across the floor. After a long pause, the door opened. A small woman in her 80s stood before me. She was wearing a print dress and a pill-box hat with a veil pinned on it, like somebody out of a 1940s movie. By her side was a small nylon suitcase.

The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets. There were no clocks on the wall, no knickknacks or utensils on the counters. In the corner was a cardboard box filled with photos and glassware.

“Would you carry my bag out to the car?” she said.

I took the suitcase to the cab, then returned to assist the woman. She took my arm and we walked slowly to the curb. She kept thanking me for my kindness.

“It’s nothing” I told her. “I just try to treat my passengers the way that I would want my own mother to be treated.”

“Oh, you’re such a good boy,” she replied.

When we got into the cab, she gave me an address and then asked, “Could you drive through downtown?” I replied that it’s not the shortest way. “Oh, I don’t mind,” she said, “I’m in no hurry. I’m on my way to a hospice.”

I looked into the rear view mirror. Her eyes were glistening. “I don’t have any family left,” she continued. “The doctor says that I don’t have very long”. I quietly shut off the meter. “What route do you want me to take?” I asked.

For the next two hours we drove through the city. She showed me the building where she had once worked as an elevator operator. We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. Sometimes she’d ask me to slow in front of a particular building or corner and would sit staring into the darkness—saying nothing.

As the first hint of sun was creasing the horizon, she suddenly said, “I’m tired. Let’s go now”. We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico. Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move. They must have been expecting her. I opened the trunk and took the small suitcase to the door.

The woman was already seated in a wheelchair. “How much do I owe you?” she asked, reaching into her purse.

“Nothing” I replied.

“You have to make a living,” she answered. “There are other passengers,” I responded.

Almost without thinking, I bent down and gave her a hug. She held onto me tightly. “You gave an old woman a moment of joy,” she said. “Thank you.” I squeezed her hand and walked into the dim sunlight.

Behind me I heard a door slam shut. It was the sound of the closing of a life. I didn’t pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day I could hardly talk. What if that woman had gotten an angry driver, or one who was impatiently waiting to end his shift? What if I had refused to take the run or had honked once and drove away?

After thinking about it, I’ve come to the conclusion that I have never done anything more important in my entire life than what i did tonight.

Our lives revolve around great moments. But great moments often catch us unaware. May our busy lives never get in the way of a truly “great moment” in the giving of ourselves to others.

PEACE

Traveling with a Special Needs Child

We first traveled with our daughter Melissa when she was an infant.  That was 22 years ago when flying was a snap.  But over time her needs became more complex.  And traveling also became complicated.  We found that advance planning was necessary to ensure an enjoyable trip. Some of the things we have done include:


Identify local medical providers in the area where you are traveling.  If possible, we tried to find a local metabolic specialist (who would be able to treat Melissa if she were to have a metabolic crisis during our trip) and jot down their contact information.

Pack extra medical supplies to carry on the plane.  It can be impossible finding a replacement feeding tube or 60cc syringe in a small country town on a Sunday.  So we always brought extra.  But as we all know, carry-on luggage now comes under great scrutiny.  When we pass through the security checkpoint we are routinely pulled aside where they open our bag and we have to explain to the agent why we are carrying bags of “white powder” (Melissa’s special metabolic formula) and syringes (for her bolus tube feedings).  We also carry liquid medications—often in excess of the maximum allowed for carry-on luggage.

While we have never been refused passage, I imagine that someday it might happen.  So I recently visited the TSA web site (www.tsa.gov) which has a section that addresses Travelers with Disabilities and Medical Conditions. In part it reads:

Medications. You may bring all prescription and over-the-counter medications (liquids, gels, and aerosols) including petroleum jelly, eye drops, and saline solution for medical purposes. Additional items you may bring include:

• Liquids including water, juice, or liquid nutrition or gels for passengers with a disability or medical condition;
• Life-support and life-sustaining liquids such as bone marrow, blood products, and transplant organs;
• Items used to augment the body for medical or cosmetic reasons such as mastectomy products, prosthetic breasts, bras or shells containing gels, saline solution, or other liquids; and,
• Gels or frozen liquids needed to cool disability or medically related items used by persons with disabilities or medical conditions.

You are not limited in the amount or volume of these items you may bring in your carry-on baggage. BUT if the medically necessary items exceed 3 ounces or are not contained in a one-quart, zip-top plastic bag, you MUST declare to one of our Security Officers at the checkpoint for further inspection.

I have printed out this page and plan to have it handy in the event that we encounter a TSA agent who is not totally knowledgeable in this area.

Another aspect that we learned about travel is that we become disconnected from the medical team that we have come to value and rely upon.  At home they know our child and are available with a phone call. But what happens if you need them and you are thousands of miles away?

Recognizing that this might be an issue, we asked Melissa’s metabolic specialist to write a “treatment letter”.  The letter was intended to provide an ER physician with a general overview of her unique, rare condition as well as a “game plan” for treatment should that become necessary.  We always kept the letter with us. Then on one trip, Melissa had a metabolic crisis.  We had a great sense of security as we gave the letter to the attending doctor who proceeded to care for her!

There are many resources on the Internet that offer helpful tips regarding special needs travel.  One of the most comprehensive that I found was on the Oley Foundation web site.   Founded in 1983 by Dr. Lyn Howard and her patient Clarence “Oley” Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and social support to consumers of home parenteral (IV) and enteral (tube-fed) nutrition, helping them live fuller, richer lives. At their web site www.oley.org they offer some excellent travel tips as well as a number of “template” travel letters that you can provide to your medical team so that you have fully documented directives for situations such as hospitalizations and IV/Tube feeding.

The best advice that I can offer dates back to my Boy Scout training—BE PREPARED.


PEACE

Open W - I - D - E

Does an Apple a Day Keeps the Dentist Away?

Some say YES, others say NO.

Apples contain properties that can kill up to 80% of bacteria that form in the mouth. But dentists suggest that apples can be as bad as candy due to the high sugar content.

For my daughter Melissa, the answer doesn’t matter … because she won’t eat apples.

Over the past decade there have been significant advances in dentistry for special needs children.  Now some dentists focus their practice on Special Needs Dentistry.  Just do a Google Search and you will find many of them.

But this wasn’t the case twenty years ago when my daughter Melissa was growing up.  Over the past 20 years we have endured many dental challenges.

BRUSHING.  As I have previously written, Melissa has an oral aversion resulting from her Propionic Acidemia metabolic disorder and as has been tube-fed for most of her life.  It is well-documented that people who are tube fed develop dental issues.

The big offender is plaque.  We know that plaque is that sticky mix of bacteria that builds on the surface of our teeth.  And the bacteria in tooth plaque releases acid that damages tooth enamel, creating holes that we know as cavities.


But what I didn’t realize is that you don’t have to eat to develop plaque. I always thought that it was the food that we eat that creates the plaque.  But I have discovered that plaque buildup can be worse for those who don’t eat because chewing our food, in part, helps to dislodge some of the plaque before it hardens into tartar.

As every dentist or hygienist will tell you, brushing and flossing is the way to rid your mouth of plaque.  But what happens if you can’t stand to put a toothbrush in your mouth?  Or when the taste and texture of toothpaste makes you gag?  The answer of course is that you FIGHT.  This was the situation with Melissa.  Since she was a child, we had to fight daily to get her to brush her teeth.  And that fight continues to this very day!

SWOLLEN GUMS.  Tooth eruption (breaking through the gums) can be delayed in young children with growth disturbances.  When she was little, you could barely see Melissa’s baby teeth in part because gums were swollen—a common side effect from phenobarbital.  We gave her phenobarb for a couple of years, following a series of seizures she had during a hospital stay when she was about two.  And even when we stopped the medicine, the gums remained enlarged.  As her permanent teeth were ready to appear, her baby teeth were still stuck in her gums.  To correct the problem she had out-patient surgery where they extracted the baby teeth allowing her permanent teeth to come in.

CROWDING and MISALIGNMENT. Many of us have had crooked teeth and braces to correct them.  And if you have had braces, you know that keeping them clean is challenging.  Now what if you have difficulty brushing because of an oral aversion?  Should you forgo braces or struggle to keep them clean?  That was the question that we faced with Melissa.  In the end, we decided to try braces.  She had four teeth removed to make space and then had braces installed.  We fought with brushing for a year.  During that time the teeth moved and while they are not perfect, they look straight.  She now wears a retainer to bed every night.  We found that the end result was worth the struggle.
Interestingly, Melissa has done some “modeling”for the company where my wife Kathy works.  The company UCare is an HMO and Melissa has been featured in a variety of their marketing materials.  Most recently UCare has sponsored a “mobile dental clinic”.  They decorated the side of the bus with a variety of pictures … including Melissa’s.  If you look closely you can see that her gums are slightly red and inflamed which is her “normal”dental state.  We find it so ironic that her picture would be used for anything “dental” related!

My daughter Melissa is pictured third from the left

Our dental challenges continue.  We have just scheduled our next dental adventure … removal of her wisdom teeth.  We are confident that she will do fine and are keeping our fingers crossed that she does not develop any complications.

Some of the things that we found helpful during our dental journey include:

Make Visits Routine. Melissa goes for a cleaning every six weeks.  While this is costly, it is now a routine and she no longer fights these visits.  It also helps to keep her mouth in better condition due to her less-than-effective daily brushing.

Offer Distractions. The noise and smell of the dentist office makes many people apprehensive from the moment they walk through the door. We have asked our dentist to use a clear shield (not a mask) because Melissa is frightened by masks.  And she brings her own music player with her so she can control the sounds she hears.

Physical Restraints. In the past it was not uncommon for dentists to suggest using physical restraints for children who would fight during procedures.  I’m not aware of the current practices but after several very challenging visits, we reluctantly agreed to the use of a “papoose board” as a way of restraining Melissa during dental procedures.  While it was successful in holding her still … but it was also unsuccessful because it made her even more frightened to go for the next visit.  In retrospect, I think it was a mistake.

I hope that some of our experiences might help you with your parenting dental challenges.

PEACE

The Nail That Sticks Out is Hammered Down

As a special needs parent, advocacy is my top priority.

By definition, advocacy means interceding on behalf of another. When we advocate, we often find ourselves at odds with “the system”.  And when we take on the system for the benefit of our child, we stand among the minority.

“The nail that sticks out is hammered down”.  This Japanese proverb warns that standing out will bring the wrath of a system that wants to hammer us down, making us vanish like a nail driven deep into wood.

Unfortunately, challenging the system is sometimes the only way to obtain the best for our child.  You might ask, why is this necessary?

I’ve come to the conclusion that advocacy is necessary because of the design of the system.  While our society’s social systems profess to consider the needs of the individual, by necessity they are designed to serve the masses.  They seek a common denominator from which they deliver standardized services.  Our problem is that our children don’t fit this profile … thus our need to fight.

The challenge of advocating for a special needs child never ends.  My wife and I have spent two decades enduring this fight—and we see no end in sight.

Over the years, we have been our daughter’s advocate as we challenged the education system (demanding an appropriate and challenging IEP); the health care system (demanding appropriate medical testing, diagnosis and treatment); and government agencies (demanding appropriate social support services).

We have spoken to government legislators on her behalf as they considered eliminating programs that support and empower her and others with special needs.

And we have joined with her physician to advocate for coverage when health insurance has denied her claims.

Our advocacy has also included supporting initiatives such as expanded Newborn Screening, which tests babies for over 60 inherited genetic disorders.  We are passionate about this cause because we know that in many cases, early detection can mean the difference between life and death.

Being an effective advocate requires preparation and practice.  Here are some tips:

Educate Yourself. Learn all you can about your child’s medical condition and the current state-of-the-art in treatments.  Discover the appropriate social services available to your child and how to obtain them.  Connect with other parents who have already traveled down this bumpy road so that you can avoid the potholes that they encountered.

Know Your Rights. I found that becoming a “pseudo-lawyer” has made me a more effective advocate.  I learned about special education law.  I learned about government rules of qualification for social services.  And I’ve learned about wills and special needs trusts to make sure that my daughter is taken care of when I am gone.

Take Action. Procrastination is the enemy of an effective advocate.  You might blame the delay on the lack of time.  But more often it is the result of denial or fear.  I have found that by simply taking one step at a time, you can overcome procrastination.

Rocking the boat is never fun or easy.

The system will work against you.  It will demand that you complete endless forms, evaluations, more forms, justifications, reviews, approvals and yes, more forms.  Answers will be delayed until you force the issue.

Keep in mind that you are asking those managing the system to approve something special, to spend more money, or make concessions that may require a detailed study or higher level approval.  These things take time.  Often the system counts on you giving up.  But for those who are persistent, the rewards are great.  Your child gets the support they deserve.

For an advocate, that Japanese proverb SHOULD SAY …



“The nail that sticks out is where I hang my hat”
Stand strong for your child.

PEACE

Lean on Me - A Caregiver's Anthem

Music has become the soundtrack of my life.  When I hear a song, it brings back memories of where I was or what I was doing when I first heard the tune.  This happens because of the brain’s “memory wiring” system.  That wiring links your memory of the song together with your memories of the events or feelings that were happening at the time the song memory was stored.  When you hear the song, that memory and the memories wired to it are activated.  The human body is so amazing!

Lean on Me was Bill Wither’s only number one hit 32 years ago.  The timeless message keeps it on many radio playlists.  And each time I hear it (as I did yesterday) it brings me back to 1972.

I was in my second year of college.  I was having fun—too much fun.  In fact, so much fun that I didn’t bother attending classes!  After failing all but one course, I was put on academic probation.  My parents were furious.  I was confused about where I was headed with my life.  The Vietnam War was raging and I was afraid I might get drafted.  I felt alone.  And then I heard the lyrics of this song and I realized that my fears and sorrow would pass.  And for the first time in my life I learned how to reach out to others for help.

This song encourages us to reach out to others for support.  It speaks to people of all races, creeds, ethnic, and socio-economic backgrounds because we all find ourselves in situations where we can’t go it alone.

Today I nominate Lean on Me as the official anthem for “caregivers”.

CAREGIVERS.  They offer a hand to those in need.  They provide a shoulder to cry on.  And they rarely get the thanks that they so deserve. Some may be caring for an aging or affirmed parent.  Others, like us, might be caring for a special needs child or adult.  Caregivers work is never done.  We must balance our own lives with the demands placed on us to care for that special person in our life.
In the end, we can’t do it alone.  We need support, but all-to-often resist asking for help.  That is where this song’s message speaks to us.

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there’s always tomorrow

Withers starts the song by reminding us that we ALL have pain and sorrow, yet we should not forget that tomorrow brings another day.  When the demands of caregiving get the best of me and I begin feeling sorry for myself, I need a reminder that I am not the only person with this challenge and that tomorrow is yet another day.

I am reminded of a speech made by Abraham Lincoln in 1859 where he recalled this fable:  An Eastern monarch once charged his wise men to invent him a sentence, to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: “And this, too, shall pass away.”

Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on

What a powerful message.  We are simply humans.  We can’t be strong all the time.  Eventually we will need help.  And that is when we need to reach out to others for support.  But Withers realizes this won’t be easy.  So he tells us that we should …

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don’t let show

Asking for help has always been difficult for me.  I don’t want to appear weak or needy.  Yes, it is my pride that stands in the way.  But the message here tells me to “swallow” that pride, admit that I need help, and ask for it.

If there is a load you have to bear
That you can’t carry
I’m right up the road
I’ll share your load
If you just call me

The caregiver’s load is heavy.  We are tired, stressed, and overworked.  And when you reach your limit and can’t carry the load yourself, help is available from your support network “if you just call me”.  A simply message, but something we forget because we are distracted by the weight of the load on our shoulders.

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’d understand
We all need somebody to lean on

In the end, Withers suggests that others might surprise you because they can relate to your struggles.  And he makes it OK for us to ask for help.  Because we ALL need somebody to lean on.
My hope is that the next time you feel overwhelmed with the pressures of caring for that special person in your life, you might consider heeding these timeless words and reach out.

PEACE