Dear Sam

Dear Sam,

I know things weren't easy for you in the beginning.  It was hard to watch you wanting to do things but having to make concessions for your big brother.  I want you to know that even during the times you were disappointed I was proud of the way you handled it.  It seemed like even at a very young age you understood that you had to put the needs of the family before your own.  But even as you struggled to understand how everything works, you had a compassion and love for him that only a strong and beautiful person could have.  It is not fondly that I remember how you would scurry under the kitchen table when you realized Tyler was entering the room without me.

Remembering these things makes it all the more special to have spent the time together last week in Florida.  Giving you wonderful and loving memories of your growing up is extremely important to me.  I want for you to understand the lessons of putting other's needs before your own, but also to feel that your happiness is important as well.  

Like most Dad's walking this earth, I wish I could be perfect and I am far from it.  Raising a typical child in the typical world is a tremendous challenge, and with your Mom and I only having experience in raising a non-typical child before you, we are feeling our way through. If you every wonder if we know what we are doing, the answer is "not really...but we are trying".

We measured our success with Tyler in how his basic needs were cared for.  Did he eat well, sleep ok, get some exercise, go to the bathroom ok, and not have any meltdowns?  Then it was a good day.  Let's hope for another one tomorrow.  With you it's much different and more complex.  The basics are not such a concern because you can help attend to most of those yourself.  The concerns are if you are getting homework done, being treated ok, treating others well, learning to be a good friend, and learning the lessons of life in a way that is appropriate for a 10-year-old.  Its hard to measure!  And for most of these things we won't truly know until you become an adult and start applying lessons in your own life.

Then I look at this picture......

Perhaps this picture tells me what I need to know.  I can see in your face the true joy you are experiencing.  There is no sign of a little girl ducking for cover under a table, or struggling to understand how she fits into her brothers world.  This is a young lady who knows who she is and is truly happy.  She is brave.  And she trusts that when she spreads her wings she will be able to fly.  

My wish for you is that you continue to grow and experience the world.  But never forget who you really are.  Never forget that feeling of empathy and compassion that you have for your brother.  Be willing to appreciate what you have, but don't be afraid to challenge the system and ask for more. Never forget that I, your Mom, and your big brother love you with all of our hearts.  You are unique and special. And most of all....smile.  Smile every day like you did on this day.

Be well and God bless.    Tom

Living in the Middle

There was a period of time where we raised Tyler in the non-typical world, along with Sam in the typical world.  If you take that last sentence literally, we were trying to live in two worlds at the same time, which is next to impossible.  This may have been one of the very reasons that we knew we had to secure a future for Tyler that would allow him to live life in the non-typical world.  It also shined a light on why the rest of us needed to secure a future in the typical world.

I believe there has to be an ability to bring those two existences together...a meeting in the middle if you will.  The amount of "middle" you can find may largely depend on the severity of the disabilities, the family dynamics, and so on.  But even where there is a "middle", there will always be two very separate circles.

There are families that live for many years in the middle, and can do so with a great amount of success.  But as this graph illustrates, the middle is often the smallest area, and for many families the most difficult to maintain.  When life is riding in the middle things are in harmony.  When the two circles pull apart, things can go wildly out of balance.  When the balance shifts too far into the typical world, the non-typical person can become lost, frustrated, confused, and more prone to act out.  When the balance shifts to far into the non-typical world, the typical family members can become left out, isolated, and depressed.  In our case we tried to live most of our lives in the non-typical world to accommodate Tyler as best we could.  Unfortunately that also lead to our own issues that went unaddressed.  Without a doubt we had times where we found success in the middle.  But it never lasted long, and the times outside of the middle were brutal.  The hardest thing for me to understand at that time was that when we were living in the non-typical circle, we were not doing anyone any good.  We we over-accommodating him, and underachieving in nearly every aspect of our lives.  Worse yet, attempts to pull him into the typical world were mostly met with disaster. 

Our decision to move Tyler to a residential home was to create worlds that we could all live in, and a middle that we could maintain more consistently.  He had to have a living condition that was tailored to who he really is, and not trying to force him to relate to a world he didn't understand.  We had to have a living condition that allows us to be parents to Sam, be a married couple, conduct ourselves as more functional workers, and focus on our health as we enjoy our middle-age years.  Our middle is now seeing Tyler at church on Sunday's, and taking him out for pizza or Mexican food.  We spend short, but quality time there before everyone returns to their circle.

If you are balancing two worlds, carefully examine where your middle is.  If you can live comfortably in that zone, you are probably in a healthy place at the moment.  But always remember, circumstances will dictate how much room you have in the middle.  If you are living in a middle which has squeezed you to your limits, or you find yourself bouncing wildly between circles, you are in a dangerous place.  Don't be afraid to find alternative ways to broaden the middle, or if necessary, redefine the circles to create all new worlds.

Be well and God bless.   Tom

Tyler is Struggling

Tyler is struggling.  

A few weeks ago his demeanor turned sour.  Right now he is basically unhappy with everything and everybody.  So much progress that had been made with healthy interactions has been lost once again.  

Obviously the worst part is that my son feels bad.  Something is wrong and I am powerless to fix it.  I have passed on a few ideas of what my be contributing to his mood, but without his ability to give us feedback, it is simply a crap shoot.  Its akin to when a baby cries and cries but every remedy you try just leads to more crying.  Only with Tyler when he is miserable he can effect those around him in the same way.  He becomes very difficult, almost defiant.  It's so sad because that is NOT who he is.  Tyler is my grinning young man.  He is reacting to something that is way off.  Is it physical?  Perhaps something like a UTI or allergies?  Is it a form of depression that he can slip into?  The truth is that we just don't know.  

What is happening is not exclusive to the special needs parent.  There are parents right now, reading this, that are watching their children struggle.  Perhaps it is a problem with addiction and their child cannot find their way out of it.  Or maybe it is dealing with depression, bi-polar, or schizophrenia.  Worse yet, perhaps there are parents dealing with a child that has been lost in one way or another.

As Tyler's parent I still feel responsible for his happiness.  I still feel that I have to figure out how to make him fit better into this world.   I have to reach out to him and make it all work out, somehow, some way.  It's my job to have those answers!  Meanwhile...my heart breaks at the reality of the situation.  I don't have superpowers any more than his caregivers do.  We are all rowing the same boat looking for an answer that we may not ever have the ability to figure out.

When Tyler struggles, I struggle.  Its a struggle to stay on task and continue to move forward with life.  Of course my brain tells me that things will turn around, and that we have a great staff, and that I need to have faith and keep moving forward.  But my heart still bleeds.  And as long as he is unhappy, I can't be happy.

And so it goes for parents who care for their children with all of our heart and soul.  We go on to work and concentrate as hard as we can, knowing a piece of us is not quite there.  We smile or laugh, and sometimes have brief moments where the sadness goes away, but it doesn't last.  We hold onto hope that the next day will hold the very answer we are looking for.  We hold faith in one hand and doubt in the other, wondering why our child is made to suffer.  We question what purpose our child's pain could possible serve.  We struggle.

For those of you joining along side of us in our struggle, we feel your pain.  We pray for you and your children.  We have to keep believing that in this world, or in the hereafter we will find peace for our children and peace for ourselves.  

The struggle doesn't last forever.  It can't.

Be well and God bless.   Tom