13 Families

Sometimes I see something to write about, and I wonder if it's relevant to our journey as caregivers.  As I think it through, I realize that nearly everything we come across in our day can teach us something, negative or positive.  

I watched a documentary called "13 Families".  This film visits the loved ones of the 13 precious souls lost at Columbine High School.  Its not a film about the details of the shooting, nor is it about the role of guns or mental health or even bullying.  It's a film about how each family remembered the ones they lost, and how each family learned to live again. As you might suspect, the aftermath affected each family very differently, but also very much the same in many ways.  One thing that they have found comfort in is each other.  

After I sat back and thought about the documentary for a while, I began to understand why it is so important, and yes, relevant even to me as Tyler's Dad.  

I thought about the father who decided that he would try in his own ways to prevent this kind of tragedy from ever happening to another family.   There was the mother who volunteered her time to help one of the survivors by taking her to therapy.  And there were also just stories of families finding simple ways to find peace and reclaim their lives.  Some found immediate ways to rebuild, while others took many years to do so.  I thought to myself, if THESE families can live beyond their struggles and not give up, I can too.  If they can find ways to reach out to other families, to be an inspiration, and to help others move forward, I can too.  All of us can.

Be well and God bless.   Tom

Living the Lie?

Dear Special Needs Parents,

Stop me when you've said this......ready........

"I'm the only one who can take care of my child"

"Nobody else can take care of my child like I can"

"My child would be lost without me"

I said it.  In fact, I LIVED it.  Every time Tyler looked at me I told myself he would implode without me watching his every move.  I thought nobody else on earth could understand his queues other than me.  I expected the phone to ring an hour after we took him to his home that day with someone screaming in the background "COME GET HIM!!!!".

The phone didn't ring.  That's not to say it went smoothly, in fact it was the opposite.  In that moment and for about 24 hours he did implode in a way.  He also did some demolition work on the house.  Every bad, ugly reaction I was afraid of  happening DID happen.  But the next day it got 1% better.  And the next did the same.  And the next.  And the next.  He learned that he was "ok" and that new ways of doing things were not so bad.  We had conditioned him one specific way for 25 years. They were simply wiping that slate clean and starting over the way an adult like him should be living.  

My friend Pete asked me today if I thought we had "held him back".  With the benefit of hindsight I had to say "yes".  By doing things the best way WE knew how to, we were having him live the same day over and over again basically.  I could not have seen that without seeing his progress now.

Tyler needed a stroller/wheelchair everywhere we took him so we could control his uneven gait and uneven behavior.  We were convinced it was necessary.  He now walks into stores and church and everywhere else without it.  The agency has never used it.  Tyler now loves to help do housework around the house in ways we could not give him the chance to do. With us we could not handle him at the dentist, now he goes and does a cleaning with no problem.

Of course its hard to admit.  But I couldn't be happier than to be so wrong.  This is Tyler's life, and not mine.  He has every right to live his life in an independent way.  He became an adult and was no longer a child and we had to give him the right to live that way.

Do NOT tell yourself that lie...please.  If you believe that only you can care for that child or that person, you are robbing them of the ability to live their lives.  That statement is born from fear.  Its the justification for never letting go.  It's a statement that is not about that person, but about you.  I know that sounds harsh and direct but having the correct frame of mind for these decisions could make a tremendous difference in your quality of life, and theirs.

Be well and God bless.    Tom

Role Players

The New England Patriots have arguably the best quarterback in NFL history in Tom Brady. They also fill their roster with players that are not superstars in the classic sense, but they are wonderful role players who do their assigned task very well.  Their wide receiver, Julian Edelman, was selected 232nd in the NFL draft after not even being invited to the NFL combine.  He had been a three year starter at quarterback in college but the Patriots saw him in different roles.

Edelman decided that in order to continue his career and help his team, he would do whatever role he had to.  He accepted that he didn't have to be the star quarterback in order to make a huge impact on his team.  He trusted that there was a place for him where he could shine in his own way.

There have been so many role players in Tyler's life that have created his successful team. These are people who do their specific jobs very well, and with dedication.  It could be a bus driver who always smiled and made Tyler feel comfortable.  It was the nurse who allowed me to work along side her so Tyler felt safe.  Its the girl who cuts his hair and hugs him every time before he leaves.  These are the unsung heroes.  These are the people that allow his world to continue to rotate smoothly.

If you are a special needs caregiver, think about those role players that keep your world rotating.  Chances are if you have a wonderful doctor, there is also a nurse or assistant that treats you well.  If you think your child is in a great school, that school is not just a teacher but an office staff, administration, and teacher's aides.  If you enjoy your church there are wonderful people doing things behind the scenes to allow the pastor to be at his best to deliver the message.  

These role players are no less important than the "star" players, and things would not work properly without them.  Salute those role players.  Tell those role players that you think they do a great job.  

If you serve as one of those role players in other aspects of your life (and nearly all of us do in one form or another), remember that you are an important part of a total team effort. 

Tom Brady can be the best quarterback ever, but if he doesn't have a good wide receiver, running back, and offensive line doing their jobs, he can't be successful.

Be well and God Bless.   Tom

Pets

Good afternoon!

Pets are a common part of most households.  They can be delightful company to their humans, and become valuable members of the family.  When the right animal is with the right family it can be a beautiful thing.

Pet ownership is also a tremendous responsibility as any pet owner understands.  They have to have their own individual love and attention, as well as all of the typical needs such as food, grooming, and medical care.  There is definitely a financial impact to all of these things too.  Any family considering a pet should consider things like budget, family dynamic, time at home, and living space.  

Individuals with special needs can respond very well to pets.  The pets can become a source of comfort for a special person.  There are many, many stories of animals who help reach those people in ways that no human ever could.

We also have to consider the cautionary tales as well.  Often the link between the person and the animal is not perfect.  The animal could actually become a victim of aggression.  If the animal is being mentally or physically abused it could cause aggression by the animal as well.  

In our experience we chose dogs which had some specific qualities.  We wanted a dog that would be small and not likely to impose on Tyler's space.  We also wanted a dog that would be sturdy and solid versus one that was frail in case he would accidentally or purposely make physical contact with them.  We looked for a dog that would be less likely to cause a bite in case there was a serious problem.  Once we knew these criteria we decided that the Pug would be our preferred breed.

Tyler grew up much of his life with "Abby" and "Jack".  Both dogs learned quickly that if they left Tyler alone, he generally left them alone.  This was not the warm and fuzzy arrangement we would dream of, it was more of a co-existence.  When Tyler became upset he did try to hit the dogs and they would scatter for higher ground.  But there were also times that he would spontaneously walk over to the dogs and pet them.  Both dogs were very patient and caring creatures who would never think of putting a mark on either of our children.

Abby died over 2 years ago.  She was the most gentle creature I've ever known. Unfortunately Jack has become ill and we are considering a peaceful end for him very soon. We were unbelievably lucky to have them each for 13 years and they served us with loyalty and compassion.  

Before you consider putting a special needs person with a pet, consider these things:

1.  What are the special considerations of that person?  Could a certain kind of pet cause anxiety, space issues, etc.  

2.  What are the common personality traits of the type of animal you would like? 

3.  Will you know the background of the animal?  Getting an animal where you do not know their temperament and behavior history is very risky

4.  Give the person some exposure to that type of animal prior to making a situation permanent.  

5.  Keep your thinking REAL and not IDEAL

The goal is to make sure that animal placements last forever.  We do not want an animal that is dangerous to our children, or at risks themselves for abuse.  Once a relationship is deemed to be unmanageable, it can lead down a very lonely path for the animal.

Be well and God bless.   Tom 

Mementos

Each morning when I brush my teeth I see that Tyler's toothbrush is still in the holder right along side of mine.  Its a silly little thing I know, but it gives me some comfort to see it there. Sam sometimes uses a cup with Tyler's name on it because she likes to think of him when she uses it.  

I have other small family mementos as well.  There is a Christmas ornament that is nearly 25 years old now which has a recorded message from my Grandmother just months before she passed away.  It still works great and our favorite tradition is to play it and then have it be the first ornament on the tree.  I have my Grandpa's dog tag from his time in the service. 

With this in mind I certainly don't think having a few of Tyler's everyday things is strange or unusual.  To me it is way to say to him "you may not live here anymore, but you are a part of our home and always will be".  

We have come to understand that it is not likely Tyler will come back home for visits any time soon.  We would love to have a situation where bringing him home for an evening or a weekend is something to consider.  But that is not the reality that we live in.  Tyler can become very easily upset when he mixes his new "normal" with his old one.  All of us are fairly sure that a visit back home would be extremely confusing for him.  Any benefit would be overwhelmed by emotions he cannot process properly.

In our hearts we know that wherever we call home, Tyler is with us.  His laugh and his love still fill every room.  We no longer talk about the stressful times, but rather focus on the funny things he would do.  

Loss is a universal thing.  Every one of us experiences losses in various forms whether it is through a loved one passing away, or when a living situation changes.  Children move away to college or marry, Grandparents move to nursing homes and pass away, and our special needs individuals are often accepted into more specialized care.  

Its important to try to find a balance somewhere between holding on too tightly, and letting go.  Our lives must continue to go on despite the loss.  I think it is perfectly normal to have some items around to remind us of those relationships.  It's wonderful to carry those memories with us as we move forward through our own lives, so long as we continue to indeed live our own lives too.  We cannot live in the past but we can carry those wonderful memories with us today, and tomorrow, and so on.

So for now I start every morning seeing that toothbrush and it makes my heart smile.  He is living his life in a new way, but a piece of him remains in my heart as well.

Be well and God bless.   Tom