Last night, while visiting with my Mom, somehow the conversation stumbled on an old hotel in Tulsa. The Camelot was built to resemble a castle, complete with turrets and a moat. Though I never entered the building, it was close to my heart just the same. As a six through about nine year old girl, I was traded between my parents about two to three times a year in a restaurant next door. Always awkward, the trade included what seemed like hours of painfully shallow small talk between my parents and my stepmother, sometimes including me, but usually not. The funny part is that we never actually ate... no one could afford to back then. We just sat there. I didn't want to leave my mother in the first place, and being with them often proved terrifying rather than fun. So as they visited, I let my mind wander about what the inside of that building held. It must be such a wonderful place! How could someplace so beautiful and creative on the outside not be amazing on the inside?
Eeh, bummer. Mom said they finally knocked that magnificent place down. She was sad, too. I can see it like it was yesterday. I'm pretty sure that even then. in the early to mid-eighties, it was out of use. The pool was always this murky, icky color, and I don't recall seeing anyone enter or leave. Once Mom and I got off the phone, I googled it. Good news! I'm not the only kid who thought that place was special. Someone else actually said they dreamed that there must be a sleeping princess who'd wake and the Camelot would magically be restored to its former glory. I want to hug that person!
In an odd way, this blog is the same sort of place as where I found my old friend, the Camelot. Someone out there is having a rough time. Someone out there doesn't know what to do next, thinks there's no one who gets it, and maybe there really isn't where they can see someone. And you know what else? Something that you dreamed of your whole life isn't at all what you thought it would be. It isn't even like everyone else's seems to be. Parenting a special needs child really is different. It really is harder.
No, I'm not saying that parents with typically-abled children don't have problems or difficulties. But I am saying that they wouldn't use words like "special" and there wouldn't be separate classes and even schools for kids like mine if there wasn't something different. Harder. This morning, shortly after getting a very encouraging call, I read one of my favorite mommy-autism-bloggers, Diary of A Mom. Her post was all about telling it like it is. Not sugar-coating what we go through, not over-dramatizing it, either, but giving a true picture of where we live. Too often I find myself putting up a nice front, so that, like my dear friend the Camelot, people will see my neat, thoughtful architecture and not see the mess that resides behind the facade. I actually witnessed, rather recently, a mother so apologetic for her special needs son's presence that it pierced my heart. In an attempt to make the person who was supposed to be there to help her son comfortable, she completely threw his needs under the bus. "I'd rather ruin his day than yours" she threw out flippantly, with him standing right there.
"He can hear you..." I thought. I was hurt for the child. Then it hit me.
That's me. Quicker to apologize and save face than explain. More apt to lay down than stand up. And in the process of making others feel comfortable, I throw my dear little man, who can't stand up for or explain for himself, right under the bus.
Please understand, I'm not advocating the practice of completely cutting loose and tearing into people, not caring who you hurt, as long as your/your child's needs are met. That's the other end of the chain. I've taught, my husband still teaches. I've been shaking and crying after a parent pulled me out of class, screaming at me in the middle of the hall because I held her daughter to the rules. She didn't accomplish anything. Her daughter still didn't go on the trip. She just made a reputation for herself as someone who had zero self control. We want to be the type of parents who take care of the problems, but who are also approachable. Honestly, the latter is easier for us.
So what happened to the girl who didn't want to leave her mama but went anyway, scared and softly crying in the backseat, careful not to make a sound because she didn't want to hurt anyone's feelings? She's having to learn take a stand in a caring, thoughtful, wise way. She's still not good at it. But now it's her little boy, and she can no longer just take all the pain, internalize it, and keep pedaling with a smile plastered on her face.
The thing is, I don't want to lose or completely cover up the little girl in me who cares so deeply for others. On the contrary, I want that caring of others so translate to finding a way to wisely and intelligently stand for our boy, knowing that if we don't, no one else will.
The thing about the Camelot is that so many people owned the poor old place at so many different times, each thinking they'd fix it... and of all those people, some incredibly wealthy and powerful, no one stood for the place, placing time and energy and cost to restore and care for it. Without care, it withered away. Vagrants called it home for a while, vandals and usual amounts of decay took their toll until it was no longer safe for humans to inhabit. Once grand and beautiful with so much potential, now it's a faint memory in the minds and hearts of those of us fortunate enough to have seen it.
At 1:45 today, we will stand up and graciously take ownership of our son's education again. He will grow in grace and truth. He will be treated as the beautiful, amazing treasure that he is. He will be given an opportunity to reach his potential with his whole family cheering him on. We are so proud of how far he's come! He's amazing... he's incredible... because every day, he gets up and faces a world that he doesn't understand. The world frightens him in so many ways. It's so unpredictable. So loud. So bright. So confusing. He's been entrusted to us. And we will do everything we can to make sure we're his voice, and that he's not just maintained but encouraged to grow and become who God made him to be. Because he's sure not going to be neglected. Not on my watch.
Thanks be to God, who loves us and gives us what we need, when we need it.