Saturday, March 15, 2014

Blossoming

Lately people have been coming up to Chuck and I, telling us about their conversations with Beth. Some we know fairly well, others we barely know! But Beth is going around engaging people in conversation, connecting with them...

We have a small coffee shop at church and every Sunday Beth buys a drink. She usually just goes up, orders her drink and leaves. Recently the barista, P, asked her how bowling is going and if she ever got her bowling shoes. (P is also a co-worker who I had told about waiting 2 months for the shoes to come in...) Beth started telling her all about the shoes and even pulled out her phone to show her pictures! P had never seen Beth open up to her like that before!

Chuck and I are in a small group during the week and one of the other couples has attended our church for quite a while but we've never hung out together. Don't really know them very well. One night at our group J tells me that Beth came up to her and another lady on a Sunday morning and announced, "I'm back!!" The two ladies nervously looked at each other not really knowing what she was talking about and asked her what she meant. Beth told them that she had been sick and had missed the previous Sunday. Oh! They asked her how she was doing and she told them all about it!

We have another friend, C, who we know well, they've been to our house and we've been to theirs. Well, one day she decided to give Beth her phone number and told her that she could text her anytime. She hasn't regretted it... so far. :) She'll come tell me about some of the texts she gets, long, conversation type texts. Texts that I've never gotten from Beth! Mine are usually just a few words, but not with C! C gets full conversations about work and art class...

This has been so encouraging for us! Beth was like this growing up, talkative, friendly, and it's so good to see her coming back out of her shell!

Saturday, March 8, 2014

Isolated

When I think back to when Beth was born, I get the feeling of isolation. Not that we were isolated necessarily, but compared to today I remember it as a lonely, isolating time.

I've written about this before, how if you needed help with something you picked up the phone and called. If you were curious about your child's diagnosis, you went to the library and looked through the card catalog for the books about children with special needs. Or in our case, 'Mongoloid children.' Yes, it was called that even as recent as the 80's.

My 1992 Websters Dictionary says, "Down's Syndrome: mongolism, a type of congenital mental retardation." That's what we had to base our ideas of the future on.

Nowadays parents ask a question on Facebook, "My child is doing such and such, do your children do this? What experience have you had with this?" And in minutes there is a thread of comments a mile long. Encouragement, resources, referrals.

I sometimes feel a little sad that we didn't have those kinds of connections. I wonder how different Beth's life would be if we had.

I guess we're coming up on World Down Syndrome Day. I said that slowly, out loud to myself the other day. World Down Syndrome Day. World. The United Nations has declared it so.

The United Nations!

My first thought was, 'the United Nations know we exist??' This is so mind boggling to me. I think of when Beth was 3 and she was playing in the front yard with the neighbor kids. The United Nations was the last thing on my mind. Let alone the world. I was just living day by day, trying to navigate this world of special needs. What did I need to do tomorrow? Why did I need to do it and what impact would it have on my daughter?


But I guess some parents decided more people needed to know about our kids who have special needs. They've advocated and lobbied for support and acceptance and awareness. Something I could never do, but am so thankful that they did. And now we have World Down Syndrome Day. That's just remarkable. Such an accomplishment.

Well done parents. Well done.