When the cat's away...

Brian left tonight for Oxford for a week. When I told this to someone today at the park, she asked if he "must be really brainy" to be going to Oxford. I leave the answer to that to our collective imagination! Of course, no sooner had we dropped him off at the train station and come home did I see all his toiletries laid out on the bathroom counter, neatly waiting to be packed! So much for brainy! :)

I'm well on the way to my first mark of wildness when Brian is away: it is nearly 10pm and I haven't even begun to wind down for the evening. Usually we go to bed by about this time, but when he's away I don't seem to hit the sack until at least 11pm. I do pay for it, but I find that I enjoy the quiet and the space to just potter about by myself. I get so little of it anymore that every stolen slice of time is worth savouring. A week stretches out before me with hopes of a girls movie night, a BBQ with the youth (with sitters for the boys), time to finish my book, time to work, and time to watch old TV shows on the computer while I iron all the shirts Brian will need when he comes back! See, even when the cat's away the mouse doesn't forget about him. :)

My second mark of rebellion was not buying any salad at the store tonight while stocking up for the week. If I don't have to eat it, I'm not going to eat it!

In all seriousness, the week does hold some logistical nightmares, like Adam's hearing test under anaesthetic which is of course scheduled for Wednesday, and which I hope and pray is finished before the sitter has to leave! It should be no problem, but with these things you never know. I'll be praying for a smooth transition into hospital, a complication-free time with the anaesthetic, and for the doctors to truly get a sense of what is going on with Adam's hearing and vision (yep, it's a double-up of systems here!).

Also, I'm trying a little experiment this week and going gluten free with our food. I've thought about doing it for a long time, and have toyed around with it before, but never given it a serious go. There is so much debate about whether or not it works or helps, but I figure that even if it helps Adam a little bit, I owe it to him to try. You can read the best article I've ever read on the topic here. In it, a good friend of ours is the anonymous Philadelphia friend who talks at length about their search for the "right" diet for their daughter. I owe my new interest partly to he and his wife, and partly to the Horse Boy event last weekend. If I'm going to take Adam's Autism seriously, I have to also take seriously that even little steps I take might help or hurt him. I will post an update here in a week.

Finally, no scratch that. Adam is still up, and obviously still hungry so I'll leave it for now. But I do want to say that I've laughed more today than in a while, and I have the boys to thank for that. It's a good time with them, and I am looking forward to summer and all that it holds.

Trying something new

I never said I was a "techie" person. Is that even how you spell it?

We've had a great weekend, and despite the bleariness and weariness I just had to fiddle with the blog a bit. I've seen some great looking blogs and wondered how people did it, and now I know: the Cutest Blog on the Block website. It's great, and if I can use it, so can you. Not that my blog qualifies as "the cutest" or even "one of the cuter..." But a girl's got to start somewhere.

But enough of that...I'm actually surprised I'm sitting here now, since I've struggled all day with a headache and upset tummy courtesy of Adam. We wondered yesterday why he was being such a pill, and after dinner he prolifically announced the reason. Yikes. The up side of the experience was that I marched him to the bathroom and showed him how to use the toilet, which he seemed to enjoy, inasmuch as one enjoys that kind of thing.

Today I've had it, but I've tried to follow Caleb's sweet advice, given to me this evening when he wanted me to read him a book: "Don't mind your tummy too much. You'll be fine." And he was right. Ironically, after I had brushed my teeth and had a conversation with a dear friend in London on the phone, I felt better. Good enough to fiddle on the computer, much to my husband's chagrin!

So now it's off to bed. It's been one of those days where you stare resentfully at the fact you've done nothing but lay around and moan. It's been grey and cold and rainy too, which after a day like yesterday, where we were very productive and it was hot (yes, hot) and sunny, is a bit of a rub. But never mind that, there's always tomorrow.

Good night!

It takes a *blank*

Before I start, I want to say that I told my husband my next blog post would be called "It takes a village" and he said I sounded like Hilary (Clinton, of course). So, to avoid sticking to a well-used cliche, I thought I would leave it blank for you to insert any size or definition of people grouping you would like. It could be "neighbourhood", or "church", or "school board" or "bus load of strangers"-you choose. There, now how generous was that?

Now that you have chosen a grouping, the next obvious question is, "to do what?" Well, survive, I would postulate. More specifically, thrive. Grow. And particular to my point here: raise children with special needs.

I began thinking about this a few days ago when we began "Head-ButtGate". No, I'm not joking, but actually I am being a bit ironic, since that's how I cope best with life. I'm referring of course to Adam, and the drama that some of his phases can produce. We had "NoseGate" last year in Durham, when his prolific sneezes made his taxi driver squirm and nearly got me carting him to school myself (that was resolved satisfactorily for everyone involved. And Kleenex loves us.)

This year it's "Head-ButtGate", appropriately labelled because Adam likes to play a "game" where he taps his head against yours. It's sweet really, harmless--unless, that is, you are not prepared for it, or he's really having fun. Then you'll be finding a cold compress and hitting the Tylenol. If you are an adult you will survive. If you are one of the children in his class at school, you will cry and the teachers will get mad at Adam. Then, if you are one of the teachers, you will send a few pointed letters home to mum, with quite legitimate intentions to protect the other children and get Adam to stop a distressing behaviour. Then, if you are me, you will blog. Oh, just kidding.

I did get that letter, and I did write back, but I'm very happy about my letter because it clearly expresses all the facets that we deal with where any of Adam's behaviours are concerned. Do I like his negative tendencies? No. Do I encourage them? I try not to. Do I want him to continue to behave that way? Goodness, no!! However, is he being malicious? Again, no. There are reasons why Adam does what he does, and these have largely to do with the fact that:

A) he has Autism, and

B) he is non-verbal.

I am not excusing him, just trying to understand why he does what he does so that I can help him to find what he needs in more appropriate ways. I think he needs a huge amount of sensory input and therefore seeks out sensory overload in certain ways. Swinging for hours on the swings, whacking his head against a door or wall, bouncing on the trampoline...these are all things that give him some sort of kick, but he needs them at very high intensity to feel the stimulation. High enough to make any of us sick, whereas Adam will laugh.

I know he also needs to communicate, especially with his peers. And right now the amount that he does that is extremely little. I would say he wants to communicate, but doesn't know how in socially acceptable ways. He does look at his peers, he does smile at what they do now and again. But to speak to them he would tend to put his hand on their mouth, which you may remember from a few days ago makes some of his pals go off their lunch! Or, he will butt his head against theirs, if they are in a certain proximity and position in relation to him. Now the sad thing is, for him to butt another pupil's head means that he's come close enough to them to really interact. And then he goes and gives them a tap and it's all over. This is forever how it is with Adam, how it commonly is with Autism in general: the conditions are right, the scene is building up to something "normal" and great happening...and then it all goes wrong.

The reason why it goes wrong? Well, Adam doesn't know how to speak yet, so he can't say "I like you" or "I like the game we are playing." He taps his head against the other pupil's head instead. Then, to him, he gets an angry/upset reaction and is made to sit on the time-out chair or some other punishment. He is isolated, which is the opposite of what he was going for in the first place. It is a shame, and yet the whole situation is totally understandable. I can't speak for the rest of the Autistic world, but I sense it's a similar thing--the ability to respond to a social situation is diminished; the person with Autism can't cope with the stress of not knowing what to do so they react "abnormally."

So. You can't head-butt (even if that's not really what you are doing), you can't not punish it, you can't excuse the behaviour, you can't beat it out of him. So what do you do?

I try to fill the need he's trying to fill himself. I try to give him words to say in that situation, and hope that with repetition he will learn to do it for himself. I try to show him physical gestures that are appropriate to the situation that he can use to express himself. And I turn to others who can help him learn these things, and teach me how to teach him as well. This is where the *blank* comes in, obviously.

I found myself feeling grateful for each person who looks after Adam, teaches him, works with him, spends time with him, makes an effort to communicate with him, pushes him on the swings so I can sit, and yes: every person who has taken a head-butt for the team. I know we are all on a journey, and I am grateful for my *blank* who most certainly help us to survive.

The highs and the lows

I thought about doing an update on the weekend, but that was four days ago! Amazing how fast time goes, especially this last week. So now for the week's update...

Some highs:

This week Brian and his colleague John Swinton (interestingly, also my work partner) held a symposium on adoption at the University of Aberdeen, where people came from all over to give papers on the topic. They were great, and I was so blessed to sit in on a few of the papers. Food for thought...and speaking of food, I also had the pleasure of cooking dinner for the 12 lovely invited delegates on Tuesday night and squeezing them together in our tiny front room! It was a great evening, even if I still wish the veggies were cooked a little better! Seriously though, adoption is one thing we are starting to think through, and I'm sure it will appear here one way or the other again soon enough. When the papers get turned into a book you'll be the first to know.

Last Saturday (after our trip to the beach, of course!) my washing machine broke down, with a big load of sandy wet clothes inside! I owe a great deal of sanity to Grace and Stevie for doing some washing for me, and the Hoover Candy service man who fixed it on Wednesday, instead of June 5 which is what they first told me. Yea for new spin motors!

Tomorrow we are watching the season finale of Lost--finally. No, finale. Whatever--it's been a long story but at last we shall know it all. Or will we? Don't tell me yet--we'll talk about it this weekend!!

Some lows: This week brought the opposite of last week: terrible, rainy and cold weather (today was 5 degrees C, or 41 degrees F. Yes, it is May 27). This necessitated some indoor play, Burger King and lots of money spent, though I have to say it was still enjoyable over all. Except that all the laundry I'm doing this week is getting soaked outside. Shame.

Also this week I had to go to the doctor for what appears to be gastritis. I'm taking tablets to reduce the amount of acid in my tummy, and I hope this will do the trick. Might have to review my diet again, though the last time I did so (a few weeks ago) I ended up giving up coffee, and am still much happier for it.

All in all a full, crazy and productive week. As you might expect. Life is good!

What a day!

Let me recap a glorious day for you.

The day began bright and warm, with blue skies and sunshine galore...this week has been much of the same, in fact: a true Aberdonian dream. We set off for another round of Run, Jump and Throw at the local Grammar school. Adam settles right in for his hour of mischief, and Caleb and I set off for "fruities", his term for anything that is soft and chewy and tastes like fruit. We found the local Co-op food store, he found a pack of yogurt covered fruit pieces. On the way back we scoped out a shop called "Hamish Munro"...the clothes and shoes were a delight to look at and feel. I found the dress of my dreams. Too bad my wallet is not dreaming: £275!!! Oh well...back to the school.

After Adam's hour we set off along country roads for his Bowen therapy. We've gone several times now, but this session was by far Adam's best. He let Jan do her work for the most part, only hiding under the therapy table for a minute or two. He is responding well to the treatment, coming on in leaps and bounds. Full of leaps and bounds, as a matter of fact, as he seems to be climbing, leaping, jumping, running and bouncing all the time lately! After 30 minutes we were back in the car, home to get Dad.

After a quick lunch we set out for the beach: where else would you go in Aberdeen to enjoy the sun and get some homemade ice cream from the Washington?? One big tide pool, several huge rocks, two pairs of soaking, sandy trousers, and four scoops of ice cream later we were heading home. I caught more than a few pairs of amused eyes at our two lovely blonde boys trotting around in shirt, socks, shoes and grins--no trousers for either and absolutely no shame!! Caleb in fact was parading in his red Mr Men undies without a hitch--rode his bike like a champ for Dad, too. Only three "falls", but he gets a high-five for each so no tears!

Back home, it was a lazy evening feeding and bathing, finished off by a curry and Lost for mom and dad. Now all that is left is the Last Episode...which we will watch sometime next week...it's going to be a crazy one, but such is life.

How do we understand normal?

I've been watching a program on Channel 4 called Young, Autistic and Stagestruck. It's about 10 young people with Autism of varying degrees who have come together to put on a stage show. The directors they are working with have never before worked with, or even met, someone with Autism. They have two weeks of workshops, one week of rehersal, and the final episode is The Show.

This show is interesting for many reasons: watching a group of young people with Autism being pushed and pulled out of their "autistic zone", seeing how normal and autistic people merge and work together, seeing problem resolution, anger management, stress relief and relationship building both within the autistic group and among the whole ensemble. But the most interesting part to me is about perceptions.

How do we perceive ourselves? How do others perceive us? If you are "normal" with a minor variation, say you have a large birthmark on your cheek, then you might find the variation is not extreme enough to warrant an explanation. Or if it is there is a simple one: "yes, I have a large birthmark. I've had it from birth." If you are "normal" but speak a different language, you might say "yes, I am from Romania."

If you are normal with a "major" variation, say you are in a wheelchair, you will be called on to account for it: "What happened to you?" To which you say, "I was in an accident" or something that makes the wheelchair make sense. Easy.

The problem is, however, when you are "abnormal" in either behaviour, intellect or socialisation, particularly if you look "normal." Then there are only two choices: you see yourself as abnormal, in which case you explain the aberrance: "I am autistic," for instance. Or, you see yourself as normal, in which case you give the other person the subconscious responsibility for finding a way to explain why you do not fit their categories. Either 1) the categories stink and we need new ones, 2) you misunderstood the categories and this person actually fits them perfectly, or 3) you really don't fit the categories and there is an underlying reason that we're not allowed to talk about.

What got me thinking about this is when two of the autistic kids say "I am normal", and I found myself thinking "What?" I guess it boils down to two ways to see the world: either we are all normal and just have social misunderstandings that cause us to see people who are "different" wrongly, or there is a 'normal', broadly understood, and some people just don't fit in. If normal is what you can expect to encounter 99% of the time, then something has to explain the remaining 1%.

I don't think there is a solid answer to this. I've had discussions about it that never reached their conclusion. I look at Adam, and, as lovely as he is, he is not "normal". I'm willing to say that, even if many people would not be. I could justify, rationalise or refer to textbooks, but the fact of the matter is that I have to approach him differently from Caleb, for instance. I have to speak differently, train differently, play differently, and love differently. Either he is normal with a major variation, or he is "different", special, extraordinary, to use American speak.

I suppose at the end of the day, whether or not someone is "normal" is also another way to say whether or not I am frustrated. You see the directors trying to work with these young people. They are doing what they normally do but it doesn't work, therefore they see the kids as "abnormal". I try to love Adam in the way I love Caleb and it doesn't work, therefore I see him as different. Maybe that is something to keep in mind, to keep processing as I go along. Is he abnormal? Am I uncreative? Are we still earthly beings who see in a mirror dimly? Is the nature of being a person, created in the image of God, so difficult to comprehend that I look for any loopholes with which to let myself off when I "fail"?

Let's see if I have it figured out by episode 4!

The High Jump

My mom used to tell me that I could do anything I wanted to in life. I guess that's technically true, to a certain extent. I could do anything I wanted to...as long as I meet two big criteria: that I spend a significant portion of my life working toward that goal, and that I practice, practice, and practice some more. I have to admit not having attained those two criteria in many areas of my life, though I keep working. But one area, one thing in particular that I want so much to do, that I spend all my waking hours working on, and that I am forced to practice incessantly, is patience. Not exactly the same thing as baking the perfect cake!

It's like the high jump event in the Olympics: almost anyone I know could have a go at jumping 30 feet off the ground over a horizontal pole. But who is going to make that a reality without spending years in training and practicing hours every day? Not many people. There was a show on MTV that we watched in Germany called "Made" that expressed this idea perfectly: someone came on the show with a grandiose desire to see fulfilled in their life--one girl wanted to be a BMX star, another an opera singer, another a ballet dancer, etc. They had to work and train and practice and usually have a breakdown before their dream started to become reality.

I was thinking about this this morning as I was feeding Adam his cereal (he's perfectly capable of feeding himself finally, but today I had already dressed him for school, and since "food" equals "body paint" in Adam's mind, I was taking the easy and less messy option). Adam is going through another facial fad right now--putting his hand on my mouth frequently, either as a way to make a connection, or maybe to tell me to stop talking so much! He does it frequently, as in once a minute at least. Say I'm with him 6 hours on any given school day, and just for grins let's say there are 60 minutes in an hour...you get the frequency we're talking about. He's apparently doing it at school too, and made one of his poor fellow pupils so agitated the other day that they wouldn't eat their lunch! Obviously it's time to work on this little eccentricity.

I know from previous phases that Adam does these things for a while and then stops. Usually, though, by a "while" I mean half a year or so. If you want me to do the calculations for how many times I'll have his grubby hand on my mouth between now and Christmas I will, but it might make me swoon.

As I'm feeding him, and fending off his hand every minute, as gently as I can, it occurs to me that I've learned a little bit of patience in my time, more precisely in the last 6 and a half years since I had kids. I've learned that doing something over, and over, and over again for or with Adam does eventually have an impact. If I can hang on long enough. It's not consistent, and there are so many times I've lost my rag with him that I'm ashamed of, but patience as a muscle in my life is slowly getting stronger.

I say this primarily because I'm usually pretty hard on myself, and very critical and discouraged of how patient or impatient I am with the boys. It's so easy to see our faults and weaknesses, and to miss the ways that we are growing as we work on things. When my mom told me I could do anything, I used to think of being an astronaut, or a dancer, or a doctor. I never thought of being a patient person. Thanks to Adam and Caleb, I work toward it everyday, I practice, and I can see little tiny glimmers of hope that someday it might be a reality.

Actually, maybe Adam is helping me in my quest directly: you can't shout with a hand on your mouth. :)