Friday, August 16, 2013

It's That Simple

I met a woman with an intellectual disability in a card shop yesterday. She was full of news. She was moving to a new place, getting a new job and making new friends. Her excitement couldn't be contained, it spilled out of her, filling the air around her. As I caught up with her news, I was caught up by her enthusiasm. I had known that she'd set this goal, I had known that she was working on it for a long while. It had been chance that we met like this and I was thrilled that it happened. She's moving out of town and I don't think I'll run into her, maybe ever, again.

She explained to me about how it came about and how much she was looking forward to it and how she was expecting her life to change. I leaned back in my wheelchair, content to simply listen to someone sharing glimpse of a future that had been longed for, a future that she was never sure would happen. And now it has.

As the adrenalin wore off she slowed down a bit and spoke, briefly, about the journey there. She'd had some hard times. She'd made some poor choices. She'd worked so hard. But she shook herself out of all that, though it was all true, it was also true that it was past. She was moving on. The next chapter of her life awaited her.

I sat back enjoying:

being the passive participant in a conversation with a person with an intellectual disability

listening to someone talk about life changes, life struggles and life accomplishments.

Believe me, when I started in this work, none of this would happen. People with disabilities did not drive conversations, they did not steer their lives towards goals that they set independent of a team, they did not map out their own destinies. When I started it was very different. If you hadn't seen someone with a disability for a couple of years, and if you then asked 'what's new' the answer would have been 'nothing.' Because nothing did happen. Oh, reports got written, progress happened on paper, progress happened on goals that didn't matter, progress happened for the approval of, and under guidance by, a team.

So, I sat listening to her, glad that she wanted to convey the news to me. Glad that she was excited. Glad that someone, somewhere, did what they were paid to do ... listen and serve.

It's really that simple isn't it?


Listen and serve.


Anonymous said...

After reading this, I reflected back to when our then 4 yr old was dx'd as having Classic Autism. When she was 12 months old, I noticed she had differences from other children her age. I kept note of these differences and researched what was causing them. The answer came quickly; she had Autism.

I contacted our family doctor to seek a formal assessment when she was 15 months old- only to be told her differences were caused by the fact she was an only child, by the fact that she was spoiled, by the fact that she was quirky. No formal assessment was done at that time.

A few months later, I returned- demanding a formal assessment. Finally, when she was 2 yrs old, she was referred to a Diagnostic Team-where she would wait for 2 more years before being assessed. During that time, I worked part time and devoted the rest of my time to her...teaching her, coaching her, cheering her on, celebrating each milestone she reached.

At the feedback meeting where we offically learned our daughter had Classic Autism, we were told to direct any funding we had put away for her education into a trust fund to pay for her care when we were no longer able to provide care for her. I was outraged that a team of 6 clinicians would sit around a table with a family and tell them more or less... that their child would never amount to much more than a burden. Don't bother with an Education Fund, your child won't need one. I realized quickly that I had my work cut out for me.

Raising our daughter has been a pure joy- filled with much love and happiness. Her Education Fund is still fully intact, she plans on using it. She enters grade 5 in Sept. and is well on her way to being a self advocate. She is confident and self aware. She makes her own decisions, (well as many as she can at 10 yrs.) haha!

She dreams of working at Claires (a hip boutique for young ladies),when she is a teenager. She wants to move out into her own apartment but isn't quite sure what she wants past that. She's only 10... there are many pages left for her to write in her book of life. My point is, she holds the pen... I will be there to hold the book steady as she writes (if she asks).

Each year she has new teachers and this year will be no exception. They will talk in whispers to me, asking about her and why she does the things she does. I redirect them to our daughter. Ask her first, if then, you are not clear- ask again, perhaps rewording for her understanding. Communication goes both ways.

I want our daughter's voice to be heard, HER goals and dreams to be recognized and realized-not a copy and paste version of someone elses' goals and objectives.

Thank you for your Blog post. It gives me hope that others are out there supporting individuals to reach for their dreams and providing support when they are asked for it.

Dave Hingsburger said...

Just Heidi, what a wonderful story, thanks ...

Belinda said...

Yes, Heidi, a heartening story. No one was listening to you or believing what you saw--someone told me just yesterday that the same thing is happening to someone close to them. It shouldn't be so hard to be heard.

But your daughter has a mom who sees her as wonderful for who she is. What a gift.

Tara said...

As an occupational therapist and mom to two little boys with Down syndrome, I continue to sit at your feet and learn. Thanks for being such a great teacher!

Wordshurtorheal said...