Having a Great Team

Ever since Tyler was a baby we tried to align ourselves with professionals that we felt were competent in their field.  As we navigated through the years, we learned that while this was a very important ideal, it was only HALF of what we should be looking for.  Equally as important as “competence” is “compassion”.  And while competence is a fairly easy commodity to find, compassion is a less common treasure to find.  As 21-year-old parents we didn’t recognize how important of a role this trait would play in Tyler’s life.  All of us have probably uttered at least a hundred times “I wish this situation came with some instructions” and I suppose the answer to that is “you have to write the instructions that work for you”.

We have been very blessed with good people to work with.  For instance, Tyler’s Neurosurgeon has been with us from almost the beginning.  He is a well-respected surgeon which is the reason we went to him to begin with, but the fact that he showed time and again that he CARED about us is the reason why we stayed.  And at some point I remembered thinking that he would do anything in his power to take care of Tyler, and at times he was called upon where he did just that.  Just as importantly, he treated us, as Tyler’s parents, with respect, and he empowered us to assist in every decision.   Never underestimate the importance of professionals who look to empower you.

Unfortunately for every good story there was one that was not so good.  We once went to see a psychiatrist (who came highly recommended) who consistently showed that he didn’t remember Tyler from one visit to the next.  I found myself correcting him over and over about details that were supposedly in his file.  After about 4 of these visits, we got a new doctor.  We learned to never “settle” again.  And through the years we embraced the ones who cared, and replaced the ones who didn’t.  This would prove to be a very powerful strategy that would pay dividends to this day.

So about a year ago, as we began to think about Tyler’s long term future, we first thought about our team.  We didn’t exactly know what we would face in the future but we knew we had to be sure we had the right support system around us.  We already had doctors that we trusted, but what else did we need?  For me personally I felt I needed a therapist for myself who could help me manage my anxiety and emotions.  After all, I knew that having lived for the last 23 years where so much of my energy and emotion was devoted to Tyler’s care, any change could be a significant challenge.  I didn’t feel that I could face that without some qualified help.  My anxiety as I became older had hit critical mass and I was no longer qualified to self-diagnosis and self-medicate.  We found, almost serendipitously, that we needed someone to care for us spiritually.  We found that we have a neighbor, and now friend, who has filled that need for all of us quite well.  And it seemed that as one piece fell into place, doors opened to fill other needs. 

One thing that I cannot stress enough is the need for the right Case Manager.  Most of us have probably been through a list of Case Managers that could fill a small phone book.  And quite frankly most of them were treating the job like a stopover to bigger and better things.  We often heard how overworked and understaffed everyone is, which I am sure is true, but it never meant we intended to settle for less than what Tyler deserved.  Finally, we found Cindy.  From the very start Cindy proved to be a competent and compassionate person.  She listened to what we said….really listened….and then offered every possible suggestion and solution in her power.  We’ve told her that if she ever even considers retiring we will make her keep Tyler’s case from her rocking chair. 

Think of your doctors, case managers, teachers, etc. as members of your team.  They are the bricks in the very foundation that can provide a strong structure if assembled correctly.

I suppose my main message from today’s entry is that you need to look at each member of your team and answer these questions:  Does each member provide competence and compassion to your family?  Do you feel as though each member would do whatever it takes to help you with anything you needed?  If the answers are “yes”, you have a very important element in place.  If any answer is “no” then make it a priority to find those qualities.  Having care that is not compassionate is no care at all.

Be well and good luck.  Tom