Sunday, March 1, 2015

The "A-Word" - Part 2

I wrote a post with a,"to be continued…," attached to the end of it, and I have been debating on whether to do a formal update.  As I've thought about it and also after being SO impatient for subsequent Back to the Future installments, I know the struggle and I need a proper follow up on our visit to The Marcus Institute (for the THRONGS of readers I have). You guys reached out to me in amazing and loving ways and you just simply don't know how much it has meant.  We feel so loved.

How to give this update has been tricky to figure out.

Because, here's the thing - I don't really have any intentions of blogging about Wesley's journey. I'd rather go back to posting humorous essays twice a year (the rate I'm currently going) about how I can't find my vacuum cleaner and how much I hate Moon Dough (like it's awful).

There comes a time when your child stops being an extension of you and they have their own secrets and stories to tell. In other words, one day, this ceases to be OUR story and becomes WESLEY'S story.

And I'm not here to be his spokesman, I'm here to be his advocate.

Inspiration for writing for me is usually born from a form of frustration and a passionate desire to share my experience in the hopes of connecting with people.  It's how I get my random thoughts in order too. Usually that's with humor. But maybe something I'm navigating resonates with someone out there who feels alone. With Wesley in particular, it has been a lot of connecting with people I already know who have walked this journey and have given me critical pieces of information that I honestly don't know I would have had without it.

- The former coworker who introduced me to Babies Can't Wait.
- The old school friend who's son sounds so similar to mine and offered me paragraphs of information about what I was about to encounter on the path to possible diagnosis.
- The people in the community who have embarked on IEP journeys in the schools systems of their own and have lent me some great advice.

I like these connections. I find the camaraderie to be comforting and the advice and guidance to have been critical in all the steps we've taken to this point.  This year has been emotional and confusing and I have learned a few things along the way with a LOT of help.

But I also want to be careful about shining a light on a member of my family who will grow up one day and read this on his own. No judgement meant…just personal feelings.

Nevertheless (is that one word…cuz, I feel like it should be like five), at our appointment, it was determined that Wesley is smart, sweet and perfect (obviously) but that he exhibits a few red flags of ASD (Autism Spectrum Disorder).  We will go for a full day of structured testing in a few weeks where we will receive our special "map of Wesley," a diagnosis (if it applies), a game plan for intervention and a ceramic dalmation (just kidding…there's no dalmation - I know, I was disappointed too).

This appointment was VALIDATING - They acknowledged that he was a tough case to call.  The appointment was REASSURING - I was finally told by an expert that up until this point, I truly HAD been doing everything I could.  The appointment was POSITIVE - because whatever we call it, Wesley is and is going to continue to be just fine.

At first glance it appears that he's so engrossed in his world of letters and numbers and his own play that he tunes out. Not always, but enough to miss out on some important social and cultural learning  you pick up in your life (seriously, I'm pretty sure I'm doing this very same thing when I play Candy Crush).

Then we come to the label. "Autism".  We won't know if we claim that word until the 18th of March. I have to be honest that at this point, I don't really care if we do or if we don't.  Wesley is a person, the label is merely a means to an intervention.  A classification that is incredibly beneficial but fails to adequately describe the extraordinary son we have.  If you have an hour or twelve…I'll bore you with the amazing-ness of my boys.

Still there is that word. Autism. It can mean a lot of things. If we come to own that label, Wesley lies on a seemingly very high-functioning part of that spectrum. That fact is kind of important and kind of irrelevant all at the same time.  There are families who have kids who lie on a more challenging place in that spectrum.  We could have very easily been one of those .  Those kids are just as special and important and unique.  And I feel weird celebrating Wesley's placement for any other reason than simply his road in overcoming vulnerabilities might be a little easier.

There is a very good chance that he could get a diagnosis now and then not meet the criteria for it in a few years. A lot of great research suggests that THAT is due to early intervention. - This is why I beg, plead and implore you to put aside your fears and seek out answers if you see anything that makes you wonder about your own children. The earlier the better. If you need support - I'M HERE - but don't stay paralyzed by fear and don't get discouraged.

There is also a chance he doesn't meet the the criteria to be on it now.  We simply won't know until he gets structured testing.

The truth is, Wesley now is no different than the Wesley that I held on September 11, 2012 (all 10lbs of him). We've just had the pleasure of getting to know him better.  I'm the one that has had to do the changing.  I've had to come to terms with a word that, quite frankly, used to scare the hell out of me.  I've had to open my hand wider…to not clench so hard because my expectations of my kids are laughable. They are their own people, with their own strengths, with their own weaknesses. They are never going to be a reflection of my plans for them - at least I hope they won't.  I am here to merely help them unlock the people they were designed to be. To teach them about life. To lead them to a loving God.  To keep them from juggling knives.  To BE THERE for them as they grow up in a world that is strange and confusing and cruel and also wonderful. To help them understand that they are a contributor to this world and not a victim of it.

So while Autism is a spectrum...the love of the parent with a child with Autism…or any other special need - is not a spectrum.  The trajectory of all of our children's lives has to be their own. We must help them blaze their own trail…in their own way.  That trail may look extraordinary.  That trail may look ordinary.  That trail may look strange or sad to others.  But whatever form it takes, the potential to do great things on that trail is not something that can be measured by anyone.

In closing, please forgive me if I don't answer the big "Is he or isn't he?" question on the 18th on the blog.  It's not that I want to keep it a secret. It's merely that it's no longer the point. One day Wesley can choose to keep that fact to himself or wear the descriptor proudly. If you want to know something and we are Facebook friends, feel free to ask me, as my mother would say, "behind the wall," in a private message. Or email me: justpeachy1123(at)yahoo(dot)com.  I am thrilled to share my experiences, hear great advice or know that we are being thought about even a little in your busy lives.



1 comment:

ladygoat said...

You are SUCH an awesome mom. Dude, seriously.

-Fayelle