The eyes have it

You know that look in someone's eyes when you make a connection with them? It's like a little light comes on...their eyebrows go up and most often a smile appears to confirm that you've just hit some nail on its head. This happens in many ways, but here's one from today.

Walking back to pick Caleb up today I found myself alongside a mum of another boy in Caleb's nursery class. I had seen her enough times but not talked to her. I knew she must speak another language from the pigeon conversations I'd observed between her and the teachers, but hadn't pinned it down until I said "hello" today as we were walking. She said hello, and then immediately apologised for her English and said she is from Mexico.

Now, you might be thinking that Aberdeen is a long way from Mexico. It is, but I, on the other hand, was thinking "oh dear." Because the fact of the matter is that somewhere, a long time ago, I also spoke Spanish. And now, with this woman in front of me telling me her English is not good because she speaks Spanish, well, what could I do? So I said, "..." (I won't bore you with the pitiful attempt at Spanish that came out of my mouth!)

It was absolute rubbish, my first attempt to actually speak Spanish in more than 7 years (I still remember my last attempt very clearly, and that story I'll tell to anyone who asks but bring a box of tissues for it). But here's the thing: the Light came on in her eyes. It had nothing to do with me as such, but the fact that her language was being spoken. Someone might understand her. And finally she could make a connection with one of "us". I know that relief well, having lived in different countries and living daily with Adam. It's a joy and a delight to make a connection with someone, to find that another person understands you in a way you didn't expect. It is a momentary feeling like your burden could be shared, even if only conceptually. It's a bench to sit on for a moment on a long, arduous walk. It is hope.

I do like those moments, and I am grateful for the Hand that moved me to speak to her. It was only fear that had held me back, and that fear can easily be dealt with by dusting off my "Basic Spanish" textbook. Now that I think about it, as we talked today, I, too, had a light come on. It's the one that says "hey, maybe you just made a friend."

This may be a bit random, but today when Caleb and I were shopping he was singing a song for me:

"Down at the bottom of the deep blue sea, catching fish for Daddy's tea: One, Two, Three!"

I remembered how he caught a fish a few weeks back that Brian then cleaned, descaled, gutted and cooked--and ate all by himself (pretty much). He'd had his face painted, which means that whenever I see this picture I think "the Tiger and the Fish" like it's an Aesop's fable.

Caleb doesn't get much mention here, but he's quite the fisherman. And gardener. And friend.

weekend update

late on Monday evening!! Oh well...

We went to our second Bowen clinic visit on Saturday, which would not be complete without some episode of sickness. Adam honoured that requirement and duly had a fever Saturday morning that we couldn't figure out. I have to say though that when he climbed up in my lap and snuggled there for 20 minutes I was grateful for the fever. It was wonderful!! He perked up after a while, and we had a nice session with the therapist. I gave her instructions on what needs to address--after the last session Adam's nose cleared up, so I'm ready to expect and see some results in his hearing, bowels, brain, etc! We're still waiting on that though...

Yesterday we went swimming, which is our usual Sunday outlet. However, we had a surprise when we were all having a snack after the session. I had forgotten a nappy for Adam and just put him in his jeans--then forgot that he didn't have a nappy on (do you see a trend too?) We were all sitting and chatting, watching Adam and Caleb having fun and jumping up on a table and then down when all of a sudden Adam says "pee pee, pee pee" and I realise he's had an accident. Now 'says' is italicised because for Adam to connect what he's just done with a word that he's learned and then say it is huge. And it's not too far a leap from that to connecting what he needs to do with a word and saying it. Big encouragement indeed.

Last night we watched "A Beautiful Mind" to unwind--which I found odd after we watched it as it's a real tear-jerker. Not to mention that Brian suggested it at 8:30pm which is usually after our bedtime! I sobbed my way through most of it, as it is such a beautiful story of a woman who has accepted her husband's disability by accepting and staying with him. Several times in the movie I found myself thinking that I would have left him, but she stays. This is even more stark if I reflect on the fact that we "can" leave a spouse, and even our own child, but how much more powerful it is if we stay with them, see them through the disability even at the complete and utter loss of our own expectations. That's really what is at stake, I think--our expectations. If I was expecting a "perfect" child when Adam was born then I would have been disappointed. And if I see living in a world with him as painful then I will be disappointed. But if, as in this movie--completely devoid of spiritual or religious meaning--I stay with the people I've been given through all the various pieces of their life, living the pain and loss with them, then out of that is borne the ultimate meaning of love. This, as John Nash says as he received the Nobel Prize, is the heart and soul of logic and reasoning.

I think I might cry again.

oil and water

You know what happens when you mix oil and water together? If you whisk it really hard it goes all smooth, and then like three seconds later it's separate again.

That's a bit how I feel about Adam's "new" school, which is actually a special needs school and a mainstream school merged together. I really enjoy the Headteacher, and the parents I've met so far, and deeply love the kids, but it's still oil and water. This is a tough mixture to get right. It's also tough to stay clear and focused when you feel your child's needs are on the line.

I wrote this little blurb to someone on email tonight, and I want to put it here for a couple of reasons:

"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.

Healing for Adam?

I am doubtful even as I write this that I know at all what I want to express. A friend sent me a link to a Facebook page called Healing for Autism. I read through the whole thing, which is not short as it is full of testimonials. Pretty amazing stuff, really. Usually I have my reservations about something like this even before I've read about it, but I couldn't find any reason to dislike what I read on this page. How can we not rejoice in someone praying for healing and being healed?!

To be honest though, a bunch of emotions come to the surface when I see something like this. Quite honestly jealousy, frustration, longing, hope, faith, hopelessness, doubt...it all blends together. I have prayed for Adam, but have I not prayed right? Is he not meant to be "healed", or have we just not prayed enough for his healing to occur? To go back a few steps, what am I asking him to be healed of, and is that really something I should be asking? Is Autism really a "prison", to use this mom's words in the Facebook article, or is it just another aspect of the human condition that can and does reflect God's face? Is Autism an affliction to be rid of, or part of who Adam was and is meant to be?

While I don't necessarily have any answers, I do think that committing to pray for our children and their particular "afflictions" or "prisons" is meaningful, and I will do it. I will also be sure to relate any healing here. Actually, speaking of healing and with regard to a former post (see Bowen Clinic), Adam had his first visit to an alternative therapy here in Aberdeen called the Bowen Clinic, at which visit the woman asked what specific issues Adam has. I related that he is often congested and it's his right nostril that usually runs constantly when he has a cold. She pressed her thumb to his face on the right side a few times (and only a few as Adam did the duck and dodge manoeuvre), but ever since then his nose has been clear. And I'm not kidding--not once has he had the same discharge from that nostril, not since that day. So where does that fit in with the healing and prayer discussion? I can't say, but I'll have to come back to it another time.

Caleb's prayer

Caleb took me by surprise tonight at dinner. Out of the blue he asked to say the prayer, and I thought he meant to sing the song we usually sing. But no, he launched off into a very solemn series of thanks for various things--the toys that Oma and Opa had given him for his birthday (two months ago!), the sunshine, swimming that afternoon, Daddy coming home on the train later that night. At the end of his list he punctuated his prayer with a sweet "ah-men", very professional. When I asked him who he was praying to, though, he said "Oma and Opa", so we had to clarify a few details during the meal!

This might not be news for many kids Caleb's age but I had never heard him pray before. We have prayed together a few times, but it was me doing the praying and not him. I know that Caleb is a listener, and this was a sweet and profound example of what he's been picking up. I wish all his examples were that sweet! :)

At any rate, he could also have thanked God for the sun and wind down at the beach today, and for not getting wet when that big wave rolled in! He could have thanked God that Mommy kept her temper (for the most part) when he and brother were a right handful in church. He could have thanked God for the car that drives us all over town to do fun things. But I do like that those things are just part of his happy life and don't always need special recognition. I like that God is in the details naturally...that is a great thing for anyone to learn.

We are connected

The world is a huge place, truly. I was reading a book to Caleb today that had a picture of the globe in it, and as I pointed to the tiny speck at the top of Great Britain that is where we live, I regarded the rest of the enormous planet and thought: wow. It really is hard to comprehend the scope of the earth, and yet almost every day I have an experience that makes me feel like maybe "it's a small world after all" could possibly also be true.

Like meeting a post-grad's wife for the first time and finding out she grew up in the town where Brian went to college. Or meeting some people at a party and finding out they are good friends with a couple we became good friends with at Duke last year. Or meeting the University chaplain in the ladies' washroom at the Stirling services rest stop while we were en route back home after our Easter trip. Crazy! And right now, a volcano in Iceland is having a pretty big impact on a huge chunk of the planet, and though we might not appreciate its effects on our flight plans, we have to appreciate that it's part of living on this earth together.

At any rate, Brian's and my interest in theology and disability means that more and more names and places are becoming familiar, and more and more connections made in the network mean that it is slowly becoming more fathomable. I like to see the workings of the church and feel that at some level we are working and striving in similar ways across the globe. I like that loving God and loving His people with disabilities in the church has given me a sense of purpose and place in this crazy big world. Even little Adam, without words or big flashy possessions, has had an impact in his own way around the world.

The people I met in London this week are amazing, and the work they are doing in the Catholic church for and with people with disabilities is inspiring. There are great things afoot, and I'm pleased to be able to watch and learn from what is happening and be part of it as I'm called to. I hope to see this tight little network grow and grow over the years. I hope it will be a little like the ash from this volcano--it will slowly spread out and people won't be able to ignore it any longer.