I haven't been able to stop thinking about John Franklin Stevens. He's the guy whose letter has been all over our blogs. He wrote it in September of 2008. The part I can't stop thinking about is this:
"The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up and when we finally say something it seems out of place."
This.... this happens all-the-time. We will be sitting around the diningroom table chattering away and from out of left field, Beth will say something that we were talking about 10 minutes before. I've wondered how to blog about it; our frustration in trying to understand this behavior. Oh my word. John's explanation almost brings me to tears. Thinking that Beth has been sitting there trying desperately to keep up. I've been so insensitive. All. These. Years. Lord, forgive me.
"We are aware when the rest of you stop and just look at us. We are aware when you look at us and just say 'uh huh' and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you."
Oh my gosh, we do that all the time! We look at her like, "Yea Beth. Okay." Then continue on!! We didn't know...!! I didn't realize that's what was happening! He's right, we really didn't mean to hurt her. I wish she could have explained what it was like for her. I'm so grateful John was able to express it.
It has changed me. Changed us. We now speak slower. Not a painful... deliberate.... torturing speech. But just slightly, to give her time to not only recognise. each. word. but. to also understand the concept behind the sentence. Then we are patient, waiting for her to process, then form a response, and actually speak it. I have seen a huge difference. She is willing to talk to us more often. And she seems happier. Like she's not as alone as she was last week.
Thinking about what we've been doing makes me sick to my stomach. Part of me is on the verge of tears thinking about what life must be like for Beth. Part of me wishes I was a better parent. Part of me wishes I had known this years ago. I know that in the world of Down Syndrome, Beth is quickly approaching middle age, if not there already. Some days I feel like it's too late and I've failed her.
But part of me is so grateful that we are making this change. Always trying to make life better for Beth. Always trying to understand her better. That's what parenting is after all. And it doesn't necessarily end when they turn 18.
It's time we stop looking over our shoulders to make sure Beth is still running this race. It's time we slow down and consciously run with her.