Down Syndrome Awareness...in case you hadn't noticed

I received a comment yesterday from Leah, another Reece's Rainbow mom. I'll get back to her comment after I take a moment for a public service announcement:

Leah is having an iPad giveaway on one of her blogs right now in order to raise money for BOTH the children they are adopting! They are going to Eastern Europe to adopt an older boy with Down syndrome and an older girl with a craniofacial syndrome, I believe. All donations to the giveaway are tax-deductible, by the way, and go straight to Reece's Rainbow, which holds the money in trust until shortly before they travel. Come to think, it won't be held in trust for long because it won't be long until they travel.

Back to my regularly scheduled post...Leah pointed out that her husband has not always known exactly what Down syndrome was (until he met her and her then 7 year old daughter). I tend to forget that not everyone has the same exposure that most people I know have had. I don't know why I wouldn't remember, however, considering what happened one Sunday night a couple of years ago....

I received a phone call from a man who identified himself as Ella's Sunday school teacher. He said he was calling to see if I could help him help her more effectively in Sunday. I was thrilled! How wonderfully proactive! "Sure!" I told him. "How can I help?"

"Well..." He proceeded to tell me that Ella was very frustrating to him. Just that morning, in fact, he had handed her an open bottle of glue and told her to make a thin line of glue on top of the lines on her paper. (Inside I'm screaming, "You gave Ella a bottle of glue! You gave a class of 4 year olds a bottle of glue?") To his horror, all she had done was bang the orange tip of the glue on the paper and make a big mess so he went ahead and made the glue lines for her. He then instructed her to take pieces of yarn and lay them directly on the glue lines and she wouldn't do that properly, either.

(I was, for the most part, rendered speechless.)

He went on to ask when I thought Ella was going to start talking. My voice returned and I told him that I assumed she would do so eventually, as her sister Vera who had Down syndrome and was adopted from Russia had not spoken much at all when we adopted her but speak quite a bit now.

The conversation vacillated between his frustration and her lack of speech for 30 minutes, with me answering his every question with uncharacteristic patience. Finally, he landed on the speech issue one last time. I answered it differently this time, saying that it was very unusual for a person with Down syndrome to never speak at all and I was sure that Ella would learn to speak.

Pause. Pause.

"Ella has Down syndrome?"

I have to admit I fell out laughing and said, "Well, no wonder you were frustrated!" We had to end the conversation quickly thereafter because I just couldn't stop laughing and I honestly didn't want to make him feel worse than I assume he already did.

Just so no one thinks I am trying to bash churches, let me tell you what I saw when I came to pick her up from Sunday school the next week (John was normally the person who took her to the nursery and picked her up but he was gone that week.) I saw this man's wife with Ella on her lap, both playing the piano and singing up a storm. It was precious! They just didn't know. Once they knew, their whole attitude changed. Information is a powerful thing.

So thank you, Leah, for the reminder that we actually do need Down syndrome awareness month for some people. In fact, I think we may need them for some of Ella's current teachers, who recently remarked how special it was that her class had two sets of twins. I teach in that class one Sunday a month, and there are only two sibling sets in it: a set of boy/girl twins, and Ella and Dean. All I can say is that it must have been some pregnancy and birth, what with having Ella in Colombia in August and Dean in China in November. Pretty impressive, huh?

So close!

Where did I get the 90% statistic regarding church attendance?

Good question, and one I have been asked several times now! I was shown an article once that talked about special needs families as being the most unchurched group in our nation. Naturally, I couldn't remember where I'd seen it so I did a little google search to try and find it. I found the article I eventually linked in my blog post and it was that article which stated over 90% of families with special needs children do not attend church. I had intended to go back and see if I could track down the original source of that statistic but forgot to do so.

In the four days (!) since I published that post, I have been in contact with a pastor who is writing his dissertation on the subject of integrating people with special needs into the local church. I asked him if he had found the original source of that statistic and basically he said it is very elusive--he's been looking for it for years. I have tried to google the information several different ways but all I get are articles much like the first one: people quote a number but don't provide a source (much like yours truly did).

I saw several different numbers, too. I used 90% in my post because that is the first number I saw. Others say it is 80%, others say it is 95%. Joni Eareckson Tada's website resources refer to people affected by disabilities as one of the largest unreached people groups today.

All that to say that I still don't know who/what organization derived these numbers or if it is a case of one person guessing a number, publishing the number, then seeing it repeated because the actual statistic doesn't exist.

This I do know: if you've read the often raw comments to my blog post or on facebook or even other websites (I ran into a full-fledged discussion of my post while looking for the stat this morning), you can easily surmise that it's a problem worth probing and discussing. Families are hurting; some are turning away from the church completely because they don't see it has any value in the life of their special child. While I strongly believe that Christ has ultimate and eternal value for all of us, I am also strongly interested in looking deeply into the reasons the local church so frequently fails to exemplify those values. (Yes, I know, huge issue, very deep, same can be said of any value the Bible espouses and we fall short. I still think it worthy of consideration.)

Thank you for asking so nicely.