Scratch that thought

I was thinking today. Shocking, I know. I was thinking about that last blog post, the one where I waxed all eloquent about Lent and what I'm learning. Well, actually it was mostly rubbish and I'd like to start again.

The other night I told my husband that I really like Lent best of all seasons of the church calendar, certainly more than Christmas. When he asked why, I said it's because I just can't seem to identify with all the "hooray, baby Jesus was born and life is great" sentiment. Not that it's not important in its own right, but Christmas in all its commerciality and red/green/gold glitterati makes me feel a bit empty. I prefer instead the hollowed out wasteland of Lent, with its emphasis on suffering and letting go.

As I thought about it today, I think that's because--as opposed to what I "should be learning"--I know deep down that I'm a pretty selfish and greedy person. I want what I want, and hate to have the routines of my life altered, especially by anything that remotely smacks of growing. As much as I say I'm looking forward to Lent, and giving something up for 40 days to "identify with Christ's suffering", I know deep down that 48 hours in I'll be pining and stroppy and looking for any excuse to let myself out of the Lent promise I've so grandly made.

Somewhere deep down I think I'm better than, smarter than, or more mature than my kids, but in actual fact I'm just like them. I don't really want to grow, I want to be comfortable. I don't want to learn, I want my life to keep ticking over smoothly and not have to think about it. Which is why every year I have a crisis where I realise I'm absolutely bottomed out and desperate. And then, and only then, do I see the point of Lent. And that's when I realise too that I like it.

This might be a masochistic or martyrish streak, similar to why I embrace marathon running or natural childbirth. But no, it's what we are made for, I think--to identify with the very desperate nature of our souls and see that in doing so we also find their very source of life. In acknowledging a grief we become open to healing. In contemplating the suffering of the Cross and the tomb, we see too the stone that will soon be rolled away.

Another plus, of course, is that you don't have to decorate for Lent. But that's another story.

Holiday/Lenten Reflections

Yesterday was the first day of Easter holidays. Traditionally the first day of the holidays is the worst for me--I have high expectations and spend several days coming down to the earth where my kids are at...then by the end of the week we're all at ground zero and can have fun for a few days before they go back to school. However, yesterday was ok, it was the day before--Palm Sunday--which pushed me to the limit.

For Palm Sunday, the routine at church is different, in that we go up front to get our palm fronds, and then walk round the church a few times with them while singing. Turns out that for a child with Autism this is very difficult. Brian was at home, sleeping off a cold bug, so I was on my own. I had Caleb behind me pretending his palm frond was an airplane (and making the accompanying airplane noises), and Adam beside me hitting his head, crying, and trying to get back to our seat the whole time. I contemplated running out the front door, but we stuck it out. Adam sat on the floor and rocked through the dramatic reading of the Gospel, which was fine. He is, after all, who he is, and we were listening to the story of Jesus being killed for being who He is.

Then we headed to coffee, where it went downhill. I think it was Caleb grabbing my arm with a cup of hot coffee in my hand that started us off, but from that moment on I spent the day arguing with him, having to resort to serious disciplinary measures twice in painful moments of necessity. Argh, I hate those moments, where you have to react instantly and then spend the rest of the day wondering if you did the right thing.

That evening, the choir was singing a few pieces of Lenten music at church. I decided it was crucial that I not only get out of the house, but have some time to reflect on the day and on Lent in peace. The music was beautiful, though terrifyingly difficult for me, and to be honest I spent much of it (hope Dr Morrison doesn't read this!!) mouthing the words and not singing at all! But the silence was therapeutic, and the message about Job reminded me of the point and place of suffering in our lives, not that I could even begin to call my Sunday "suffering". After I got home I still had time to mend hearts with Caleb before he went to sleep, which was truly the sweetest part of the whole day.

I'd like to think that if I sailed through Lent without any crises of soul it wouldn't be what it's supposed to be. I spent the day seriously doubting my ability to be a parent, to help Adam cope with life, to discipline right, to make good decisions, to sing in a choir, to do this thing called Life at all. But the whole point of Job, and Lent, and life, is not that we do things perfectly, but that we are becoming who we are supposed to be. Now that I think about it, Palm Sunday set me up well to already be at ground zero on Monday, and have what turned out to be our best first day of the holidays in a while. So maybe I am learning after all.

Saturday

Saturday was a beautiful day in Aberdeen--bright blue skies, light clouds and a whippy spring wind. Just after breakfast we headed out in the car for Inverurie, the next big town along the A96. As we got into the car we were having a discussion about Adam, who didn't seem to be on top form. He was walking along slowly, with his tongue sticking out. He doesn't usually have his tongue sticking out at 10am--it's something that happens when he gets tired, like 7pm at night. I began the rundown in my mind of all the possibilities, which did not include what was conclusively proven about 10 minutes into our drive: an upset stomach.

Just over the hill past Tyrebagger woods Adam let loose with what little he'd eaten at breakfast. We paused in a bus stop to clean him up, and debated carrying on with the plan of the day. It was 50-50, but we'd already packed the bags so we carried on. In retrospect it was the absolute right decision, but at the time I wasn't so sure!

The reason we were heading to Inverurie was for Adam to have his first appointment at the Children's Bowen Clinic. I will spare you my lame summary of what they do and let you read it for yourself if you are interested. Suffice it to say we're always game to try something new, and we just hoped that Adam's blip on the way would not repeat itself in the middle of the session!

The woman who worked with Adam was great, and he did great. He tolerated her touching him without complaint for the most part, now and again waving her hand away and looking at me as if to say "what IS she doing?" I mentioned that his right nostril is constantly clogged, and she set to work on that too.

I found myself really hopeful, as I usually find myself hopeful when people are working with Adam, but of what I'm not really sure. I know that people seek treatment for their children's disabilities for many reasons: cure, improved ability, better quality of life, etc. I know for a fact that Adam's Down Syndrome will never be cured, and whether or not his Autism can be is beyond my ability to answer. I also know that I couldn't care less whether or not he's ever "cured"--he is Adam, regardless of his "condition", and that's that.

What I do hope for is that through these treatments and daily work with Adam his communication might improve, and that he'll gradually become more independent, and maybe even potty trained. I hope that his nose might unclog, and that he'll be more able to tolerate physical touch and changes to his routine. But in all of this I want to be careful and mindful of the line between wanting to "fix" him and help him. I don't need to change Adam to be "better", I need to help him in every way possible to reach his potential. His potential, not mine.

Anyway, that is what I tell myself, and it is a good reminder with Caleb as well. I don't want to make my children who I think they should be, I want to watch as they grow into the people they were made to be.

No more blips after the morning--we had a lovely day in Inverurie, a great walk in Kirkhill forest on the way home, and two very tired boys at 7:30pm!

Just another day in our circus

Yesterday was a typical day. Believe it or not we have lots of them. The weather here has been dire the last few days, as in grey, foggy, damp and cold. We had nothing to do yesterday afternoon so I took the boys to KC Kangaroo's. This is an indoor soft play place here, great for killing a couple of hours on a cold Thursday afternoon. Great for relaxing with a magazine or book while the boys get hot and sweaty running around the little obstacle course.

Or at least it used to be.

I love those moments when I casually look up from the glossy pages before my eyes and see Adam climbing up the netting around the outside of the ball pit. The netting that is meant to keep kids in the ball pit. I scurry over to the other side of the room and we engage in a frantic battle of wills. "No, you will not climb up there, come down!!" "Oh yes I will mom, see my leg going over? He he!!"

He thinks it's fantastic, and quite frankly, so do I. For a long time motivation to do things was pretty much absent in Adam, so anytime he wants to do something I see it as good. Even something he's not supposed to do which is, well, most of the time. He's also got some amazing physical capabilities that I love to see in action. Even if it gets me into trouble. Which it does, well, most of the time!

Ever hear that theory that most people in the world can be divided into either rule keepers or rule breakers? Well, Adam is a rule breaker. I think this is because of both his Autism and because he's half his father. He doesn't know that you aren't supposed to climb the periphery netting...it's there and looks inviting, so why not? He doesn't know that food is supposed to go into your mouth and not be painted all over your face. He doesn't get that taking off your shoes and throwing them "at" people is a little uncouth. Or that gulping the communion wine at church is probably not going to be found funny by anyone other than his daddy and I (this one is true and should really be seen--every Sunday morning at 10:45, St Andrews Cathedral!)

It's tough, this balance between encouraging Adam to be who he is and try to get him to conform to social norms. Most of the time I don't care, and I'm proud that he is so effortlessly himself. Most of the time I love that people stare at him, or their eyes bug out at something he does, or I get told off for one of his little adventures. I'm happy to be the point person for Adam. The few times when I really do care, or I get cross with him for something, are more to do with me than with him anyway. I do occasionally get a fright for his safety, which is where I lament that he has no sense of danger. But this is not the same as breaking a social rule.

The thing that most people don't think about is how many limitations are already on his life, let alone that pesky little rule you are going to complain about to me. This is where I think social norms are more a communal corset that we force ourselves to wear, that nobody really even likes and that most of us wish we could sometimes cast away like Adam appears to do.

Adam is a good boy. Like all kids, and particularly those with disabilities, he does the best he can. If that's not good enough, then I can't really help you.

Oh, and maybe you should look away now!

Yesterday again

Yesterday. I always seem to be writing about yesterday. I'm chronically a day behind and playing catch-up is my favourite game! I suspect that the fact I'm sitting here right now, writing about something that happened yesterday, is probably also the reason why I won't have time later to write about something that happens today. Oh well, you live when you live and you write about it later...if I can remember it by then, that is!

Anyway...yesterday.

So my son has just moved to a new school: Mile End School in Aberdeen. Actually, two schools will be moving and merging: Beechwood and Mile End. The building they are moving to is brand new, but on the site of the old Beechwood, a special needs school. The old Mile End school is down the street, but will soon be gone. The Beechwood students moved to the new Mile End last week, and the "old" Mile Enders will be moving over Easter. Confused yet?

Anyway, Beechwood is where Adam started his school career and has gone for the last eight months. In fact, he's only ever been in a special needs setting, so this move is probably scarier for me than for him. At Beechwood he was in a small pond of about 50 students. Now he will be in an ocean of 450 students. That's right, his school of 50 is merging with a school of 400. I think everyone is a little nervous! So far, though, the Headteacher, teachers, staff and parent council have done a wonderful job, and I can't say enough good about them.

Apparently, naming the new school posed quite a problem, one which I wasn't aware of until Friday. To me, the new name just means that I have to think of Adam as one of a bigger, wilder and more able group of people. I have to let him be part of a setting where I'm not sure he'll fit in or succeed, where he might well get lost. This is hard to do when he's been sheltered by the Beechwood name for so long. But I might as well get used to it: he's not a Beechwood student anymore, he's a Mile End student now.

We went to a fun day at the new school yesterday, organised for the annual Sports Relief charity. It was great, another (relatively) sunny day to explore the beautiful new school. Aberdeen city council put a lot into this school, partly because it's a flagship experiment in merging two such different populations. Yesterday was my first real experience of this experiment, since the schools have not physically merged yet.

Adam and his brother were exploring the soft play room when a group of "big" boys poured in. Suddenly Adam and Caleb were tiny and fragile, liable to be run over by their bigger Mile End counterparts. Despite my nervousness I enjoyed meeting the boys, and introduced them to Adam, telling them they'd be school mates after Easter. They seemed ok with that. One boy asked "is he disabled?" and I appreciated both the fact that he asked and that he was relatively sensitive about it. My only answer was 'yes'. I'll have to let that be enough for now.

So Adam will be part of this crowd, the race-running, football-playing, rope-skipping, Irn-bru drinking crowd. It's exciting, and scary.

Immediately after the fun day we went to a local church where a Causeway Prospects group is now meeting every third Saturday. Causeway Prospects is a group who seeks to bring people with disabilities into the church and do church with them. It's great, but what a polar opposite world to the one we had just left!!

We had a great time being church together, being noisy and real together. Still, though, I find that I have a hard time letting go--when the leader says "feel free to move around and make noise", I still find it hard to let myself relax. I'm so programmed to follow a certain set of rules, and expect Adam to follow them, that even when they are removed I'm still constrained. Luckily though there are others there who don't have that problem, and I'm hoping to learn as much as I can from them.

Well, that's it for now. More tomorrow about yesterday, I guess.

sb

Hello again!

The Brocks are back!

I've decided to try my hand at blogging again, and I'll tell you two simple reasons why. First, because the blog I did (sorry, Adam did!) for our year in Durham was so much fun. I had a look back at his blog and remembered a lot of fun things we did that I had already forgotten. I can't even remember if I've brushed my teeth most days, so that's not exactly surprising. But it was fun to look back and I think in a few years I will be grateful to look back and see that some of our present day events have been recorded.

The second reason is simply Adam. Life with him is anything but normal, and I appreciate the space to think through and recount experiences that I have with him. Even the most ordinary of events, like going to the park (see below), brings out issues and emotions that I don't want to gloss over or forget. I have been given a gift in Adam, the gift of seeing life from a different perspective, seeing people from a different perspective. Life with him might at times be hard, but it's also a rich landscape of theological, sociological, and philosophical insights (none of which I'm responsible for talking about first!)

Enough of the blather. On to the first topic for perusal...

The park. Not always my favourite place to go, and I realised yesterday why that is: because of all that can go wrong. The first thing I notice when we go to a park is how many kids there are. None is my best option--nothing can go wrong! (at least, not with anyone else involved) A few kids and, well, it should be ok. A lot of kids and my nerves are already shot. Yesterday there was something between a few and a lot of kids at Seaton Park. Darn.

So Caleb and Adam head on to the train, and Adam starts jogging to the other side. It's really quite cute: Adam "jogging" is a sight to behold, with his fists by his chest and elbows sticking out to the side, it looks put on but it's not. Caleb is hot on his heels because, even though he's already taller than Adam, at two years his junior Caleb depends on Adam to set the trend when they are out. What Adam does Caleb does.

They soon encounter the group of boys at the end of the train. These boys are probably 6-7 years old, but they immediately focus on my boys and start asking questions. They ask Caleb his name, and because he gets shy and quiet they misunderstand and start taunting him that he has "a girl's name." I casually step in to spell out his name, just to eliminate confusion, mind you. Then I remind Caleb that he can push through the group if he wants to climb through the front window. Now, I know I don't have to do this. I'm working on that whole momma bear thing!

But here's the great thing: despite the funny looks he gets, Adam pushes through the group without so much as a second glance, and heads back in the other direction. He hasn't noticed the boys or their smirks. He doesn't understand or bother about their snide little remarks. He isn't self-conscious like Caleb. He just is. That's really what I love about Adam: he is who he is, without pretence or apology or regret. Oh, if only I could have a tiny bit of that ability.

I realised then that I dread these kind of experiences. I hate that suffering and emotional torment are part and parcel of childhood (indeed, life), and wish I could protect my boys from every instance where they might get hurt by someone. And I admit, when I see a group of kids that my boys will encounter, I know the chances are high that someone will point out how different Adam is. I watch to see how Caleb responds to these encounters, and so far he's never been too bothered. I pray for the words to explain Adam (and how others react to him sometimes) gracefully to Caleb when the time comes.

The flip side is that I also rejoice in the saving graces of Adam's particular disability. There is a beauty to see how life could be if we were all "disabled" like Adam is. If we didn't even look around to see who is watching us while we dance to music at the mall. Or cough up our dinner at a pub. Or hike up our shorts super high on the playground. What would it be like if we smiled at strangers? Or tried to take the nice lady's jacket off at the grocery store because it's inside and we don't need our jackets inside? Or gulp the communion wine because, well, because it tastes good!

Maybe the park isn't just indicative of all that can go wrong--maybe it's also very much about what goes right. Caleb sticking with Adam through thick and thin, Adam outperforming everyone on the fire pole (even the 7 year olds!), both boys grinning at me from the top of the slide...the friends we've made at the park, the times when I've been surprised by another child's perceptiveness, the parents who have helped me look out for Adam unsolicited. These are things I would miss if I didn't go to the park at all. Not to mention having two very unhappy boys!!

Come to think of it, I like the park after all.

sb