Monday, April 26, 2010
"We are having an inane discussion about jogging trousers, of all things. Some of the ASN kids can't manage buttons or zips, and/or have frequent accidents, and so need to wear jogging trousers. Now that they are merged, they have to abide by the "standard" uniform, which does not include jogging trousers. I asked why the standard uniform is not jogging trousers to begin with. That would put all the kids on equal footing and not single anyone out. Because, as one parent put it: "they don't look smart." Exactly, I said to her. The ASN kids don't look smart is the underlying belief, and we are not about to be brought down by them. I find this kind of discussion exciting and worth having, whether in the church or the school system."
First, this is an example of what is happening under the surface in any merge: it is rarely two equal groups blending together equally. It is often one larger group allowing/absorbing another smaller (not necessarily in size) group into itself. I understand this, and yet to pretend that kids with special needs are automatically included or on similar footing just because you say it is absurd. Disability is absolutely opposed to the way our society is set up. It brings people down, to be honest, and nobody wants to be brought down. I'm not being ugly: when our society is set up for people who have motor-neural difficulties, and problems communicating, and behavioural issues, and low muscle tone, etc., and the rest of the population has to fit into THAT mold, then we're talking.
Second, I want to be reminded of what my idols are. More specifically: I can easily get caught up "advocating" for Adam in quite good ways, and they become my identity. At the end of the day this is God's story, and Adam is very much a part of it, in all that he is and is not. I can raise my fist and proclaim the "truth" as much as I want, but, as St Paul reminds me, if I do not have love it is all in vain.
If God has called me to be a whisk, then so be it. But may I have the grace to love everyone I am "whisking" and resist the temptation to thump my fist. For in doing so I drown out His voice.
Wednesday, April 21, 2010
Sunday, April 18, 2010
Friday, April 16, 2010
Monday, April 12, 2010
"Hey, I know someone you might like to talk to."
I regularly experience someone I know saying this or something like it and making the connection for me with another person. It's always interesting to me why this happens, what drives that networking impulse we have. Obviously some point of possible connection stands out--a love of a certain sport, or a cultural background, field of work, or unique characteristic ("You should meet Mike...he's also got really big feet!") As humans we like similarity--we look for the things in other people that we can resonate with, either things about ourselves or things we like or dislike. These commonalities provide us with some sort of bedrock from which to build the relationship.
For us, however, it's a slightly different motivation to make a connection. I never have someone say "My friend Helen's son likes Thomas the Tank Engine too, you should talk to her!" The predominant reason why anyone suggests a friend or connection for Brian or I is that they know someone who has a child with either Down Syndrome or Autism (or both) and that is our point of commonality.
Why do this, though? Why suggest that just because our children both have an extra 21st chromosome or behavioural difficulties we might be friends? I think the reason is the recognition that we all need friends for our journey, and that on this particular journey for Brian and I and Adam and Caleb, we can use all the friends and support we can find.
It is not so much that our kids are the same, because that is also not true. Just because a child has Down's or Autism doesn't mean they will be anything alike at all. But our journey will still be similar in its trials and speed bumps--waiting for physical development, hoping for words to come out, trying to find resources, lamenting educational obstacles, etc. And this journey is one that is noticeably difficult, like being a foreigner in a land where you don't know anyone or speak the language. I do occasionally feel like that foreigner with Adam and our life, and I very much appreciate the friends along the way who I've met or been introduced to who help me struggle on.
Sunday, April 11, 2010
This picture was sent to me this morning by the woman who runs our church creche, Christine, passed on to her by her granddaughter Emma. The picture was taken at least three years ago...and yet I bet you can guess who it is! :)
It's Sunday evening, the last day of Easter holidays. Tomorrow the boys return to school and life returns to "normal". I have to say that I'll miss them and the lovely holiday anti-routine we've enjoyed. It's been a new era for us in so many ways, and I am reluctant to let that slip away. But I know that over the next few weeks the momentum we built will grow and the boys will continue to develop. And hopefully I won't drag my feet toward the next school holidays, but leap with joy and thanksgiving straight into them.