The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Monday, May 31, 2010

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.

Thursday, May 27, 2010

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!

Saturday, May 22, 2010

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's going to be a crazy one, but such is life.

Thursday, May 20, 2010

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!

Friday, May 14, 2010

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 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 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. :)

Wednesday, May 12, 2010

Apples and Oranges

"Don't compare your child to other children." Cardinal advice from all the baby books, and yet I bet if you surveyed 100 parents out there 99 of them would say that at one time or another they had compared their child to another child (and the 1 who denied it is lying). It's hard not to compare--as humans we are born with a special impulse that makes us look at ourselves and look at others and see how we rate. It is only natural that we would do it with our children too.

When Adam was born I tried to keep up with the baby books for as long as I could. If a range was 6-9 months and he was 10 months, I could always claim that he was three weeks early. If he was meant to do something at one year, I would cite all the kids I knew or had heard of who didn't do it until 18 months, thus buying us 6 more months. Part of this was because we didn't have a diagnosis yet, and there was still a chance that he was "normal." I was holding on to this normal and trying to compete with it--comparing him at every level. Another reason was that I was instinctively defending myself and Adam against all the people who asked how old he was and then looked carefully at him. You could see my answer didn't match their expectations, but I always felt that if I had a reason for the discrepancy that might shield Adam from the inevitable response, thought if not spoken: "What's wrong with that kid?"

After he was diagnosed positively as having Down Syndrome, I felt the pressure lessen. There, you've got your answer: "what's wrong? He has a disability. That should satisfy you." I, of course, was not satisfied, as I didn't feel that anything was wrong with Adam in the first place, or to be more truthful: I didn't want it to be seen that way by the world. However, that was when I began thinking of apples and oranges, as in "you can't compare these two things, they're two different fruits!" I realised that Adam's diagnosis meant that he was an orange, and I could relax and let him be different from the apples.

This was a comfort for a while, but could never actually save me from my own natural human impulse. The trouble was, I also felt that if Adam was an orange, then we had to keep an eye on the other oranges! First we read several books about kids with Down Syndrome, all of whom were already much farther on than Adam. Then we were in a support group for parents of kids with DS who were talking, walking (Adam didn't walk until 27 months!*) and generally progressing in ways that he was and is not. Now he is in school and needs the most help of any child in his class. Any group that we go to, I can guarantee that Adam will be the child playing on his own and the others will be playing together. He is, of oranges, certainly behind in the flanks.

Why did this come up? To be honest, because I read something about another child with DS who it turns out can read and talk. As I read I could feel the old bristles coming up..."what, you mean life is hard with your child? But she can read and talk? What more could you want??" I know, it's pathetic, but getting to the bottom of our pathetic impulses is the only way forward.

I have enough friends in the disability world to know there are many children who have more difficulties than Adam, who will never be "ahead" in the ratings. I know how wobbly it is to compare Adam to another child and feel either discouraged about him or critical of the other child. In a sense it's still apples and oranges, only Adam is the orange and everyone else is an apple!

As I think about it, I know why that happens in my heart. It's about the hopes and dreams I have for Adam, wanting him to be able to interact with his peers, play sports with other kids, laugh and tell jokes with his brother, read and enjoy books with his father, go to work someday and maybe have a relationship. It's also about the fears, that he will never be able to talk or communicate well with others, that he will never experience friendship, or camaraderie, or the feeling of sharing intimacy with another person.

I hope, and I dream, and I fear: therefore I compare. It may not be that simple, but that is the best summary I can think of for it. And what is the way to deal with this, you might ask? Well, it is my husband's ability--and Adam's extraordinary gift, to himself and to me--to stay in the present. Whenever I am tempted to bemoan Adam's lot in life, or mine, to regret the past or to worry about the future, Brian reminds me of the critical element I seem to miss: "But just look at Adam. He's so happy." And it is true, no matter what I think Adam has missed or will miss, no matter how much he is behind the other kids in his class, he is happy. He doesn't worry about the past, or the future. He is like the biblical lilies, just hanging around looking brilliant and being fully who he is supposed to be. And the more I can let him be that, I am allowing him to have the greatest success of all.

By the way, * was supposed to remind me to say that not one day of the 27 months mattered in the end. When Adam walked, we cheered.

Monday, May 10, 2010

There we are

Let it never be said that Adam is not a smart boy. He may have earned himself the nickname "Bogey-nose" from the kids who ride on his daily school taxi, quite legitimately too, but he is still a smart boy. He knows what he wants and can now ask for it. And he also knows what he doesn't want, and every last ounce of muscle in his little body, approximately 45 pounds of it, will protest to the bitter end. I guarantee you if Adam is not inclined to do something, he ain't gonna do it.

That includes visits to the doctor, though this is not a new thing. Today was eyes, and I knew right away that he wasn't going to "look at the pretty ducky" for all the persuasion in the world. Luckily we had a nice practitioner who, rather than get annoyed, helped me think through how we might get a good result with Adam for next time. Secretly, I'm not sure there will be a next time.

After all is said and done and we're home watching Cars (again), I still find myself in the position that I hate: figuring out what is worth doing and what is not when it comes to Adam.

I know, for instance, that trying to persuade him to watch one of Caleb's movies with him is not worth doing. He won't watch anything but Cars and that's that. Or, in the words of a British saying, there we are. That's a great phrase that roughly combines "there you have it" with "that's the way the cookie crumbles" and "who cares anyway?" thrown in for good measure. It's the perfect phrase for know that lovely chocolate cake you made for Adam's birthday? Well, he's not going to eat it, so there we are. Or, hey, there's a great game of rounders in the park, does Adam want to play? No, he doesn't, and there we are. Or maybe, is Adam wearing his glasses these days? No, he's not. There we are.

Where we are is this little piece of no man's land where I frequently have to decide what Adam is going to do, what he's going to have to do, and what I'm willing to do for the sake of what he needs. It's the place where I long for the ability to reason with him, to explain that if he just looks at the duck once we don't have to come back. Where if he doesn't look, I then have to decide if he gets anaesthetised so that the doctors can have their look. What happens if we do that? What happens if we don't? Do they really need to look? Should I just lie back and quit fighting every doctor who needs a look at Adam? Because if that's the case then I also need to know if we should be paying rent to the hospital, since we'll be there that much.

Sigh. Where did I put that manual for raising Adam again? I'm always losing that thing...

Anyway, there we are. Another day, another dilemma. It's good to be alive.

Friday, May 7, 2010

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."