This post was originally published by Janet Boebert on Finding Joy in an Ordinary World at http://thenextstep1991.blogspot.com/2013/04/for-you-created-my-inmost-being-you.html. It is reprinted here with permission from the author.
I am here at my desk this morning, early-early, thinking about what to post. What to say. I’ve read my daily scripture and I don’t really want to write about the kings of Judah and Israel – the ones who walked with the Lord, and the ones who didn’t. Fascinating, yes – I even read some of the commentaries and ‘lessons’ attached. But Joy-worthy – not today.
I read the latest post on A Deeper Story – one of the blogs I recommend. It was a well-written post tying music to the passing of a daughter – a daughter with special needs. Someone shared by the mom writing the paragraphs – someone who loved music and spread joy. I get that. My daughter does that. And I could feel that mother’s love, and her ‘missing’ through the words. I understand. She mentions going through the valley of the shadow – I’ve been there – different circumstances not tied to the death of a child – but I’ve been there. I know. I am thankful for this mother’s comfort, for her words, for her view.
I can’t write about that either. It’s been done. Then I looked at another blog – The Third Glance –written by a young woman with autism. I didn’t know. There’s a call for postings about the ‘ausome’ in autism. Here’s something.
I met Katy when I was bringing my daughter – my daughter with Downs Syndrome – to the youth group on post at Fort Hood for the first time. The youth leader was confident that she would be fine. “We have special needs,” she said, “we even have a youth with autism.” Of course, I recognized that Katy was ‘the one’ on sight. She was wearing a t-shirt – I forget the exact saying – that proclaimed something about the wearer being autistic.
My daughter wears her disability on her face. There are unique facial features associated with the syndrome – epicanthic folds on the eyelids, a small nose with a flat bridge, low muscle tone which can result in a protruding tongue…. But here was something different. This high-schooler was advertising her uniqueness on her t-shirt – proclaiming to the world her difference. How brave, I thought. How refreshing.
Over time, I got to know the whole family. Two teenagers with autism – a young man, Kurt, and his older sister, Katy. Katy always brought her bible to chapel and sat in the front. The better to answer the rhetorical questions in the sermon. I loved to hear her no-nonsense, straightforward, biblically-correct answers. She was usually right on – and held our chaplain to a pretty high standard of more practicality and less fru-fru. Katy’s brother sat in the back of the chapel, with his mom and an electronic device. He was usually plugged in – headphones on, fingers and thumbs playing. Dad played recorder in the praise band – he was in the perfect position to keep an eye on everyone.
The youth group grew and I found myself sitting with these parents while our kids did their youth thing. I guess we were always in a position of seeing the social pieces. Kurt stayed in the back for the most part, pacing – it was a loud group of kids and the fact that he was in the same room said a lot for his wanting to fit and belong. Katy brought a bag of books. She liked to stay in the middle of the group – she could distance herself as needed by reading. My daughter – she yearned to be part of the clique in the middle – the social movers. She was happy when they gave her a moment’s attention.
It was hard, as parents, to see our kids – hovering on the edges of this dynamic group of typically developing youth. Katy and Kurt’s parents had no other kids. My daughter was also an only child. It was hard for us to keep from projecting our own social needs and wants onto our children. It is so easy for us, who know our children, to see their core values and strengths. It is so easy, for those who don’t know our children, to only see their surface actions. My daughter’s hugs and smiles come from a deep place of acceptance and joy. Katy’s no-nonsense answers come from a deep place of intelligence, moral strength, and self-esteem. Kurt’s pacing and electronics come from a deep place of inner conversation and thought.
I remember hearing a parent once, explain how he was a little bit insulted by the term special needs, used for his daughter. He explained that she really had the same needs as everyone else: the need for food, clothing, shelter, mental stimulation, and love. The need for social interaction. Needs that we all have. His daughter just had a few extra needs. She needed some different circumstances in order to access the others – a wheelchair, someone to help her with grooming…. She learned at a different rate, but she learned. She communicated, but differently. She was differently abled – not dis-abled.
There was a line from the movie Avatar that resonated with me. I see you. It was used as a greeting, as a phrase of respect – an understanding. I know you – I understand you. I see your challenges and your spirit – I see your strength and your courage. I know you – I undertand you. Sometimes, my daughter and I meet someone who actually does see her. I have learned to value those people – especially. They are gifts in our lives.
Like our kids. Like Katy and Kurt. Like my daughter. I love this family of differently-abled young adults. They are gifts in our lives. Katy is going to college – to study accounting. Kurt is working toward expertise in technology. Their parents are superheroes – navigating that narrow channel of advocacy for them and teaching them to advocate for themselves – surrounding them with support, seeing the big picture in the long haul – looking forward, always forward toward a time when others will see their children as they do. Looking forward to a time when others step up to fill the gaps of needs and extra needs. Looking forward to a time when all children truly move from where they are to where they need to be in order to live a successful, contributing life – no complaints, no battles, just a can-do attitude and willingness. Looking forward… always. I think that’s pretty darned ausome.