Friday, July 5, 2019

What About When You Are Grown?

Right now, you are cute. People laugh at your antics when you drop your drawers and pee at the pool. When I explain you have special needs and people smile and nod with understanding or at least empathy but as you grow, I see eyes beginning to shift. They are darting away wondering exactly what you are thinking or why you are behaving the way you are?

I want you to know I am doing all I can to help you. I want to teach you, so I bring you where we go, even if it means your siblings have to leave early or that we can't show up to the planned events of the day because you are part of our family, of our life, you are ours. We adore you. Completely, even with the disability that has changed our world in ways we never anticipated.

I am FINALLY at a good spot. You see, its taken me time to get here. Like today, when I heard you open the fridge and no matter how quickly I ran, coffee sloshing about in my cup, you had already haphazardly taken the pie out of the fridge and managed to create an upside down pie like no other. In months past I would have cried. Instead, I snapped a photo, sighed and began the clean up and though you apologized, I am not sure you actually understood.

Or there was yesterday, when you leafed through a Playmobil Pamphlet and insisted you needed the "lego house". You got dressed, got Daddy to do the same and insisted you go out to the "shop" to buy it. Yesterday. We all listened as the following hours you continued to beg for this toy at times screaming, crying and having a fit. Though we told you it was the perfect gift for your birthday, you couldn't comprehend what we were telling you.

Then there was the quick errand dad had you go on. He handed you four pennies, as I rolled change last night and asked you to bring it to me. Uneasy, I listened as you climbed the stairs. I feared you would eat the pennies and our 4th of July would be spent in the ER pumping your stomach but as your dad says, we have to try. When you didn't arrive in what I felt was a reasonable time, I called to you. No answer. Daddy followed you and you smiled as you told us that you put the pennies in the sink and broke the vending machine. Daddy grabbed tools, and I watched you as he took apart the sink to retrieve the money. You didn't understand. You kept apologizing for breaking the vending machine and began to script True and the Rainbow Kingdom. As you apologized you continued to lament the fact that you "keep messing up". My heart began to break as I knew that you didn't really understand what we were expecting of you.

As I continued to roll coins, I turned inward, worrying about what will happen when you are grown. You see, today, I got a glimpse of what may come if I cannot spread awareness about neurodiversity and for us, personally, autism.

Today we visited the town pool. Usually we know a number of people but the holiday had families in town hitting their typical jaunts, the parade, the fireworks and upon entering the pool it was immediately obvious there were at least two older individuals with autism, one was immediately drawn to our family. As she tried to communicate with us, our family welcomed her. I headed towards mom sharing that yes, we too live with autism and I got it. As her daughter, nearly my age began to hug you, she pushed your head under water and her mom nearly had a heart attack about to jump in the pool completely clothed. As I hoisted you out of the water, she apologized. I got it, but others didn't.

While you drew me away, I watched as this same person went to others and began to try and engage. The answer was simple. No. No one wanted to accept her and welcome her. Certainly, it can be an experience that calls us to be drawn out of our comfort zone to accept someone so different but it can make her day and allow her to live her best life, even if its just a few minutes of our time.

I couldn't shake the way I felt as I watched people trying to get away and I began to lament your future if I cannot make a difference, for you, for her, for others. You see, autism can be seen as "cute" when you are little but as you grow autism won't go away. Those tantrums that I can currently hold you through may destroy me. The meltdowns will become more obvious and your inability to cope with stimuli will be what holds us back, though we will always try. Perhaps, you may be able to deal with challenges more easily but perhaps you won't. Perhaps, like this woman people will scatter, they will be drawn away, afraid of what they don't know but if they don't take the time, they won't learn the obstacles you have overcome to live life in a world that isn't readily created for you.

So today, I am sad, I am worried. I am fearful. I am worried about what will happen when you are grown, but as I promise today, I will begin to look at ways I can continue to spread awareness, to help you and to help others like you. You see, sweet little one, I can't tell you what will happen when you are grown but I can tell you that you that I am here. I am going to work to make others see you, see your strengths, see how you get past obstacles, see how you have grown our family, in ways we could have never expected. You see sweet girl, while I am fearful about the future, I believe that you are the reason I am here. You are the purpose God planned for me, and for that, I am grateful. Until my last breath, I am yours.

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