Good news...Bad news

We have good news and we have bad news.  It really doesn't matter which news you want first, because the good news is the bad news.  How can bad news be good news?  Well, I updated my Facebook status yesterday, after we received our news, to state that sometimes devastating news can actually be the best news ever, especially when you really already knew it and the news you get is just a confirmation of what you already knew.  So, what I am saying is, we found out something pretty devastating yesterday.  But it was good to find out, and we are actually happy with the news, because now what we thought we knew has been confirmed, verified, and professionally determined.  The feelings we have had and the frustrations we have been dealing with are finally validated and we are not crazy, making things up, or exaggerating a situation.  We are not over-reacting and we are not bad parents.  We are relieved.  And while we call this news "devastating," it is not news that has devastated us.

So, the news is...that Tyler has been diagnosed as being on the autism spectrum.  Somewhere between Aspberger's Syndrome and Pervasive Developmental Disorder--Not Otherwise Specified (PDD-NOS).  Why is this good news?  Well, because we now have a name for something we have been challenged with for years.  We can move forward and speak, act, and advocate with a specific purpose and identity.  We've always had a good and right purpose--for Tyler to live happily.  But without that name, that diagnosis, it's been extra challenging to do all of those things.  Without that name to call this "thing" we've been dealing with, our battles and obstacles became more about helping people to understand and "get it" and less about taking steps to help Tyler.  It doesn't have to be as much about making people understand or "get it" now, because we can call it what it is and then move on to dealing with it.  We don't have to defend ourselves against people telling us we are bad parents, that we are enabling a lazy child, that we are letting him get away with things, etc.  We can move forward and start advocating for Tyler instead of defending our choices, actions, and requests.  And when people rudely ask, "What is WRONG with him?" we can politely reply, "Nothing is wrong with him, but he does have autism."

Why has it taken this long to get this information?  This diagnosis?  Honestly, that's not the issue.  It doesn't matter.  It could be that nobody was really certain.  It could be that there wasn't a need for the diagnosis.  Maybe we were already dealing with it in an appropriate manner.  Handling the behaviors and the other challenges in a way that was best for Tyler.  Maybe it didn't need a name.  But we finally got to a crossroads where WE needed it to have a name.  Our battles and challenges were overwhelming us and our advocacy was becoming less and less effective.  We needed to be able to tell people, "Hey, he has ______ and that is the reason he act this way, says that, can't do this, etc.!"  Please DO NOT mistake that statement as us saying, "Hey, Tyler has autism and so he has an excuse for not doing the things he should or doing things he shouldn't."  Autism, Aspberger's, PDD-NOS will never be an excuse for anything.  It will often be an explanation.  It may sometimes be an obstacle.  It will even sometimes be a comfort.  But it will never be an excuse.  It doesn't need to be.  It is a blessing. 

And it will never be all of what or who Tyler was, is, or will become.  It is not fair to define anyone by any single thing about them.  It is not fair to define Tyler by this diagnosis.  Because of this diagnosis, he has not changed.  He still loves the same.  He still hurts the same.  He still has fun the same.  He still struggles the same.  Tyler is NOT autistic.  Tyler has autism.  He is not dumber, less able, or to be felt sorry for.  He is still Tyler.  He still has strengths and weaknesses.  He still has wonderful and special characteristics and he still has some bad habits and less desirable characteristics.  Tyler will continue to accomplish, grow, develop, and live.  Tyler will also continue to be met with challenges, struggles, and hard lessons learned.  What can change, is the understanding of Tyler.  We will learn to accept and understand his limitations and how to accommodate them.  We will learn when and how to increase and decrease our expectations of Tyler based upon his needs and the support he has.  We will learn how to educate others about his needs and circumstances and we will help him grow up being confident, strong, and grounded.  We will help him come to understand himself and his diagnosis.  We don't want anything more for Tyler than any other parent wants for their children and we don't expect anything less for Tyler than any other parent expects for their children.  Our hopes and dreams for Tyler are the same as other parents' hopes and dreams are for their children.  It's very basic and simple.  We want, expect, and hope and dream for Tyler to grow up to be happy and productive.  We want, expect, and hope and dream for Tyler to be a good person who will touch the lives of others in a positive and healthy way.

The same Tyler he was yesterday before this label was placed upon him.  We've said it as often as many other parents have, that we don't want Tyler to be "labeled."  But that's not entirely true.  Having autism, or being labeled with that, helps us in many ways help Tyler.  So labeling him in that way is beneficial.  What we don't want to happen, is for the label of having autism to DEFINE him.  I feel I'm being redundant...so let me finish with this and move on.  Autism is one ingredient of Tyler.  Just as sugar is one ingredient in sugar cookies.  Alone, it is just sugar.  With eggs, flour, and other ingredients in just the right amounts, mixed, stirred, and carefully baked...they become cookies.  Autism alone is just autism.  But mixed in with Tyler's smile, his caring ways, his outbursts, his quirks, and all the other ingredients in just the right amounts, mixed, stirred, and carefully nurtured and loved, they become Tyler.  He is his own perfect, unique, delicious recipe, and autism is part of that perfection.

Tyler has autism.  He is not autistic.  There is nothing wrong with him.  There is nothing we will do to "cure" or "fix" him.  We will make choices and decisions to make his life the best it can be, just as any parent would.  We will need your help from time to time.  We may not always ask for it.  We will not always do everything right, but we will always do our best.  We will make mistakes.  We may be protective.  We may get defensive.  We will not always want to talk about this.  We may want to only talk about this at times.  We may shut down.  We may not be able to shut up. 

If you want to know more, we will be happy to answer your questions to the best of our ability.  We will continue to talk with you about it, update you, and keep you informed.  We do not know all the answers, and we probably never will.  We are still learning about this.  We have a lot to learn and a lot to accomplish.  Tyler has been the center of our universe since he was born and he will continue to be.  But our lives will not be consumed with autism.  It has just now become a mere part of our lives, not what our lives are all about.

We will continue to post about this.  As we learn more, you will too.  If you want to learn more on your own, please visit AutismSpeaks.org.  Our journey has only just begun, although we have been on the road for a long time now.  We ask for your prayers for Tyler and for our family as we welcome this different chapter into our lives.  Do not pity us. Do not feel sorry for us.  Do not be glad you are not us.  We are blessed, truly, truly blessed.


Until next time...