When I first started this autism journey when my son was diagnosed at just about two years of age, I came across a quote by Sally Meyer, whose writings I have grown to love. It was a simple quote that to this day still has a profound effect on me. "Autism is not the end of the world, it's just the beginning of a new one, open your eyes and see."
At that time my eyes were squeezed as tightly shut as you could get them. I didn't want autism. Didn't want a new world. Didn't want to see what would lie before me. I didn't want to go to Holland no matter how pretty the blasted tulips there were. Didn't want to go to Italy, Beiruit, or any other place someone compared "autism" to. I wanted to simply be back in that dream where both my boys were perfect and my life would be lived happily ever after. But even as defiant as I am, I eventually forced myself to pry my eyes open to face this new world head on. I would not allow autism to be the end of that dream. I would allow myself to forge ahead with a new dream. I would define for our family, a new "normal".
Our first family vacation attempt with autism helped necessitate that new "normal" for our family. We learned that as much as we tried to remain the same, some things would have to change. Perhaps the "autism awareness" lesson in that for us, was that while we should always try to help Brandon fit in our world as best as we can, we must respect the parts of his world that we have no right making him leave, if just for our sake.
But, I’m Italian, and I’m stubborn, not to mention very sentimental. I grew up on Long Island Sound in New Jersey, and have many, many wonderful memories of the beach, “Ole Barney” - the lighthouse, fishing, and being around a bunch of family loudness and laughter that I have so loved. I wanted to bring Brandon with the hopes that maybe, just maybe, something from my childhood surroundings would touch him in the way that it touched me as a young girl. Maybe something about the sea breeze would reach him in a way that we couldn’t. I suppose some part of me was still picturing myself as a typical mom taking her typical son on a typical family vacation, like other typical families do. But, -- I’m not a typical mom, and I didn’t have a typical son. And so began our vacation….
From then to now, there have been so many instances like that, where we've just had to say, "This doesn't work for us." So very many others can do typical things together with their child, youth, or adult with autism. We applaud them. We are happy for them. But for us, we've had to learn what works for us. And most importantly, what doesn't.
My typical son Matt got married this past weekend. After I had posted all the pictures from the wedding online, someone asked about Brandon. Why there were no pictures of Brandon and his brother, the groom.
Why? Because Brandon wasn't there.
Make no mistake, even though we have learned acceptance and how to thrive in our "new normal" - it doesn't mean that at times it doesn't cut like a knife. That it doesn't pierce through our heart like a sword. Do you think the entire time I sat there watching my son say his vows that I didn't notice who was missing? Do you think that the entire time I saw my son's best man standing beside him, I didn't have to endure the pain that it should have been his brother there beside him? Brandon is the exact same age as Matt's cousin who was the best man.
But Brandon doesn't understand about brothers. About weddings. About being a best man. So instead my very best friend made sure Brandon had the best day of his life at a respite event during the wedding. Where he could laugh, run, be chased and tickled the whole night.
That's what autism awareness is. It is joys and it is sorrows and it is everything in between. With that very first vacation to our typical son's wedding, and all that has been in between, we have learned that Autism did not, has not, and will not ever, defeat us. It may redefine "normal" for us in how we live our life. It gives us the highest highs in finding out what we are truly made of, and it gives us the lowest lows in wedding pictures with someone missing. Autism at times slows us down, but never stops us. Autism puts up a good fight against us, but it will never defeat us. Never.
Autism Awareness for us is simply that we have a child who is a different kind of same as yours.
Autism Awareness for us is simply that it means we live our life a different kind of same as you.
Though in so very many ways that count --- perhaps even better.