Just Wait and See

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Pushing Past ‘Crazy Mom’

February 18, 2016 by Ellen Moore Leave a Comment

This simply blows my mind. It’s not what just happened that is so surprising, it’s also how I reacted that I found shocking. Fortunately, I was able to catch myself in the moment and bring it together.

I was talking with Catherine’s teacher about some aspects of her school day. The conversation turned toward eating. At school, they refer to her lunch experience as “tastings” and I send in various foods each day. In our prior county, they wouldn’t feed her at all. Period. It was one of the many sources of tension that eventually pushed us out of that county. At Delrey, they worked on therapeutic feeding. I was so grateful. Here in Howard County, we settled on “tastings.” I always thought that was a euphemism and figured it was better than nothing.

“What’s your goal for Catherine relating to this?” her teacher asked me on the phone.

I paused. I guess I paused just long enough because she continued… “I mean, do you want her to actually work toward a swallow or do you just want her to have different tastes? Do you think she’ll be able to eat on her own one day?”

There it was. One of those many questions people ask that rubs right up against what I desperately want and what any sane person will EVER think will actually happen. She asked the question in a very genuine way. It was unlike the accusations and doubt behind questions I’ve received from many others. She was genuinely filled with curiosity and trying to figure out how to help Catherine the best.

Part of me was shocked. Why wouldn’t I want her to eat, right? Why is this question even necessary? Why would I settle at “tastings”? And part of me was terrified. “Be careful, Ellen,” I thought. “This is how folks determine you dream too big for your daughter. This is how schools decide you’re unrealistic. This is how the people who ‘know better’ put me in a box labeled “Crazy Mom Who Is In Denial.” ” I took a deep breath and decided to press forward. To be real. To simply be myself.

“Well, let’s see….” I pressed forward carefully. “This is where I’ve been told in the past by Maryland School for the Blind that my expectations are too high. But here’s what I know for sure,” I said, ” If we don’t have the expectation, then I know for sure it will never happen because we will never try. So yes, though it may seem crazy now, I would like to think she can eat by mouth (and then I pulled back just a little) – maybe one of her meals each day – eventually.” Wow! I said it. Thinking back on it, I didn’t even sound that convicted myself. It was one of those sort-of kind-of statements that sounds so weak someone could blow it off with a whisper. If someone really pressed me and said, “Oh come on, do you really think that’s possible?” I would have a hard time answering yes. But oh how I long for it to be true.

I do know absolutely, positively, beyond a shadow of a doubt that if I don’t set the vision, folks don’t know where we’re going and we’ll for sure never get there. For sure. So, I was proud of me for saying it, even if I was nervous this was going to start a tense conversation just like it had in the past.

“OK. That’s great to know. Now I know where we’re headed and I can work toward that,” she said. She didn’t argue with me or make me feel like I was nuts. She simply took in the goal and said she’d start working toward it. I guess this is how a mustard seed of faith can start to move a mountain. Won’t it be cool to see this mountain move?

Filed Under: Best Of, Hope Tagged With: goals, school

School

July 20, 2009 by Ellen Moore Leave a Comment

Catherine has been attending UCP’s Delrey school this summer. So far, she’s doing great, and we’re really happy with it, especially in comparison with the county school for special needs kids. They’ve been able to feed Catherine and to help her use switches to communicate, and she’s doing great! She had a “jam session” with one of her classmates, and they both activated switches to make music. Both these kids are ones folks might think can’t do anything. But Delrey believes in these kids, and they work harder and look a little more creatively at the ways in which the kids can respond.

For example, the one boy uses a switch at his toe and his elbow. I remember walking into Delrey the first day. We talked about using Catherine’s legs for switches rather than her hands. They wanted to know which leg was more responsive. I guessed the right, but told them I wasn’t sure. They asked what would be a second point? “A second point?” I asked. Frankly, I would be happy to get one point communicating clearly. “Yes, we like to find two so we can work on more complex communication ideas.” Wow! Not only were they trying to find communication opportunities; they wanted COMPLEX communication opportunities. I’ll take it!

Anyone in the MD area reading this can check out the school at http://www.delreyschool.org/ It’s a great program.

Cheers,

Ellen

Filed Under: Matter of Fact Tagged With: disabled kids, school, special needs

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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