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