Friday, March 11, 2011

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 ( 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 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.


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.


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.


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.