Posted by: Leigh Reynolds | March 25, 2014

Reasonable Expectations

A while ago I had an appointment with Wil’s diagnosing doctor. It was a good visit, he is a great doctor and I appreciate the way he interacts with Wil, how he originally took his time with him to get to a diagnosis and the resources he continues to recommend. It was a great appointment until he said this…

“I think you want me to speak frankly, right? I get a sense that you want me to lay it out there?” I nod; he continues, “OK, good. So there are two ways his future can play out. Maybe he is living in your home, because he may never really function on his own, really, but you give him something to do on the computer, process paperwork, whatever, and he’ll knock it out. He’ll do great. Or the other option is he is living in a group home, has a job with the group, and can function relatively well there…” Then he went on to talk about different therapies and resources that might allow him to achieve these ‘reasonable expectations.’

A while later I attended a special needs conference in Kansas City – just 9am-3:00pm – a quick day jam-packed with information on setting up a special needs trust, maneuvering and managing a successful IEP (Individualized Education Plan) with the school system, making sense of all of the possible therapies in autism. Again, a great day with tons of valuable, well presented information, but totally overwhelming. Everyone there was wrestling with so much and there was a weight in the room – a mix of sadness, fear, loss and anxiety – among all of the parents and care-givers that hung in the air like a thick fog. It clung to me and I wore it home, not really understanding it was there, yet feeling it and unable to remove it for quite some time.fog

A week after that I attended a one-day conference in Columbia, “All God’s Children”, which was all about inclusion for Special Needs families in the church. Again, lots of great information, inspiring… and yet so many there were coming from a place of sadness, loss and rejection from the one place they felt sure they had hoped to find refuge during the storm – the church. They were there to try and build it back up, for themselves and others, but still that heavy weight of… something… hung in the air and tried to adhere to me. This time I was far more ready the shrug it off – to reject its attachment.

It is this notion of ‘reasonable expectations’, inclusion and acceptance that I just keep turning over and over in my mind and my heart. What is reasonable? Who decides what is expected or how to get there? Why is inclusion so challenging and what does that word inclusion even mean? Is it welcoming the folks from the group home and setting aside a special pew for its residence, cocking our head to the side and smiling as we say ‘how nice of us to include them here’? Is it taking the church van to bring in some folks from the homeless shelter, serving them a meal in the basement and holding a separate prayer service for them? Is it working with someone to ‘enable them’ to act and react and communicate in a way more comfortable for us?

Or, maybe – just maybe – true inclusion is opening up our minds and hearts to anyone and everyone to be there, to serve, to participate to the fullest, in their own way. Inviting anyone to join our community and give from their unique and individual place of strength. Allowing someone to achieve their own personal highest and best that is based on what fills their soul, not mine.

Maybe Wil is going to grow up minimally verbal and live in a group home or with us; maybe he is going to astound us all with his brilliance as he unlocks his own unique way of communicating and moving through the world. Maybe somewhere in between.

Maybe there could be a day when each individual and unique child of God can be just that… Individual and unique. And we can all embrace and welcome that.

If I can embrace that Wil is beautifully and wonderfully made exactly as he is, and lovingly foster whatever future joy life holds specific to him, then maybe I can help others to see that too. Not just in Wil, but in all of God’s creation. Maybe we can all shed our ‘reasonable expectations’ of how we need to act and dress and communicate and achieve; instead embracing a remarkable expectation of uniqueness, individuality, surprising singularity that allows people to shine.

As I try to teach Wilson, I find I am the one who is learning. His view of the world is a little more magical. His ability to focus and embrace things uniquely gives me greater acceptance. His happy, joy-filled babble says more about how he feels the beauty of God’s creation than any lengthy tome I can write.  He feels free to revel in a glorious world, finding marvel in a long blade of grass, new leaves sprouting, the way the wind floats and a shadow falls.

SunshineThruTreesI think our God is a god of the extraordinary. I believe He created my autistic son with just as much grace and love and perfection as he did my other two children and any and every other person. He created the homeless man on the street, the addict, the stripper, the banker, the venture capitalist, the nun and the atheist each with the same depth of love and care.  Jesus came and died for us all. Each and every one.

As Christians, maybe our job here is not to lead people away from their awfulness, but to help each other embrace the amazing that is inherent within us all because of whose we are. Our mission isn’t to help people earn their way to heaven – someplace else – someday – but to do all we can to make this place more heavenly in the here and now.

Maybe all that is a far more reasonable expectation for a child of the one true God.

And that is what my autistic son is teaching me every day.

 

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