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.

Sunday, December 5, 2010

What was I saying about Rambo?

Is this pregnancy hormones, or something in the water I'm drinking? After the scene the other day at Ramboland, which I have only just begun to recover from and stop analysing, I have now begun another fight.

This time, it's against Aberdeen City Council, who are proposing a series of drastic cuts to educational services for children with Additional Support Needs. Not only are they suggesting that 50%, or possibly even 100%, of Pupil Support Assistants (PSA's) should be cut from ASN classrooms, they are also proposing to raise class sizes from a teacher:pupil ratio of 1:7 to 1:10. Among other ludicrous suggestions, the impact of these cuts have not been explored, nor have they fully consulted with the groups of people likely to be affected most: parents, teachers, support staff and most of all the children with special needs in question.

But they wouldn't get much from the children, would they? No, because many of them can't speak for themselves, let alone speak at all. And their parents are often so involved in looking after them and surviving day to day that they have no energy to fight this subtle attack from the city council.

So I guess that's why I've dug out my cammos, machete and war paint. Here I go again, and if you care to join us, look for Save Aberdeen ASN Services on facebook, or sign the petition here. Thanks.

Wednesday, December 1, 2010

A little bit of Rambo in us all

Yesterday I did something that I didn't think I would do, though it has always occurred to me that I am capable of it. I lost my rag at some kids who were harassing Adam. And their moms. Loudly.

Seeing as the snow continued to pour down out of the heavens, and we had once again been cooped up in the flat until noon, I decided to take the boys down to the beach to an indoor soft-play centre called "Ramboland". This place is the epitome of cheesiness, with life-sized murals of Sylvester Stallone as Rambo painted all over the walls. It is also, however, Adam's favourite place, probably because we don't go there very often. No real reason, except that we usually either walk to the close one (especially when the roads are covered in ice and slush), or drive to the farther ones to use up more time and see a bit of country. Ramboland also has the benefit of being next door to Burger King, just in case you need a bit of sustenance after your play.

As we walked through the gates I had the simultaneous joy at noticing we were the only ones there, and disappointment as four moms with at least 3 kids each came in just behind us. Oh well, makes for a bit of entertainment, I thought. Little did I know!

It quickly became apparent that the kids had observed Adam's "differences", and though he didn't pay them a bit of attention they proceeded to run away from him, follow him around, and generally behave like idiots. All the while Adam was merrily doing the loop and really enjoying himself, so I didn't pay too much attention until Caleb came up to me and said "Those kids are saying we're monsters, but we're not monsters at all." I knew exactly who they were calling a monster, and that's when I stopped focusing on my book.

I'll skip the details, but suffice it to say that for an hour and a half I watched the kids acting stupid and their moms being totally blase about it. Finally I put down my book and went to play with Adam and Caleb, feeling that little bit protective, and when the boys (about 8-9 years old) were staring at us from above I lost it. "YOU! (I pointed to one) GET MOVING!" And I indicated with my hand that he could take a hike. No fingers, just move it along. I did the same with another who was watching, and added, more for my sake than anything, "LEAVE HIM ALONE, I'M SICK OF IT!!"

Well, next thing I know he's running to mama and crying at top volume. At which point I stalk over and give it to him and the moms all at once. The only defense they offered is that "they are just children", at which point I asked one "Do you know what it feels like to watch your child being treated this way?" She had nothing to say. A little while later they left, and I turned my back on them all as they went out the door.

I would like to say that I'm proud of this, but I'm not. I'm glad that I defended Adam, that I had the words to say, and just enough righteous anger, to make them hit home. I hope that every one of the kids and moms learned a lesson, but the reality is they probably didn't. I know that even though Jesus turned the tables in the temple, that was only one example of pure-D anger out of so many other examples of being patient, forbearing, gently instructive and teaching the people who didn't understand Him at all.

The real irony of the whole affair is that usually Adam has trouble and pushes kids, and it's him that I get cross with. But yesterday he was good as gold, not once doing anything wrong.

I wish I could follow Adam's example, of doing his own thing despite what other people are saying or doing about him. I wish more that I could know he would be able to live his whole life in peace with other people protecting him. Maybe that's most of all what brought out the Rambo in me. And maybe I'll have to keep fighting a bit more, and of course loving, teaching, forgiving and encouraging others to be different. Hmm, now I know why Rambo had a machine gun.

And that's why we had ice cream in the freezing cold at Burger King afterward. And it tasted very good.

Monday, November 29, 2010

There's SNOW place like home!

Aberdeen and most of Scotland have been blanketed by an early winter snowfall over the last few days. This early frosty weather has caused travel and school transport chaos big time, but also has created opportunities for winter snow play to make the long weekend enjoyable (the kids are off school Monday and Tuesday for inservice days). We all pulled out our snow boots, woolly socks, long underwear, and waterproof gear and headed outside to play.

As you can see, Caleb also needed his Ben 10 goggles to keep the snow out of his eyes! Perfect for when a car drove past him and splashed dirty, salty water into his eyes, only he didn't have them on then! But now he won't take them off....

We had friends from Baytown visiting with us last week, Shawn and Sarah Aghajan, and they too got to experience first hand the trouble caused when a few inches of snow drop out of the sky. Caleb and I took them to see Dunottar castle about 13 miles south of Aberdeen, but the snow was so bad that getting there was dodgy, the path down to the castle not terribly safe, and the castle itself was closed! In the end we had a lovely lunch in Stonehaven and took pics from a safe distance...
Yes, Shawn messed that one up! (just kidding Shawn!) It was an amazing time for pictures, as the sun shining down magnified the snow clouds over the North Sea in the background.

Yesterday was Sunday, and after church we had soup and then went outside with the requisite gear to do some sledding (well, three of us anyway). I'll try to add a video below of Adam and Brian sailing down the hill in front of our flat, with Caleb giving them the turbo boost push-off. The best part of the afternoon was Adam learning to throw snowballs--he loved the whole idea, even getting them thrown at him! His chuckles made frozen fingers and ice up the nose worth it all! And let me tell you, with the arm he's got, he'll soon be a force to reckon with!

That's all for now. Enjoy whatever weather you have...we're going outside!

Thursday, November 11, 2010

Worthwhile struggles

I know it's been a long time since I last wrote anything, and as soon as I have a minute to remedy that situation I will. But, in the meantime, on this cold Friday morning I will leave you with the link to an article I wrote for Biola magazine, the Fall issue of which has just come out.

I receive the quarterly Biola magazine all the way over here in Scotland, and enjoy looking through it as a link to my history and the chance to see what and how Christians around the world are getting involved with life. However, I had started to become disillusioned that there was so little mention of the issue of disability within the pages, and wrote to the editor to express my opinion. After all, disability is the main priority of our life, and I know we are not the only ones.

He wrote me back straight away and asked if I would be interested in writing about our story and what I am doing with my life now, so I did. To be honest, I never actually thought it would come out, mostly for lack of my experience as a writer! But now that it has I'm glad to have shared and grateful for the place that the Lord has given me to be planted and bloom.

Worthwhile struggles indeed, and I don't take credit for writing that title. Enjoy!

Thursday, October 14, 2010

Holidays again

One begins to wonder when the Brits get any work done for all the holidays they have!! Here we are again, that time of year when the potatoes used to get picked by school children, so they would be given two weeks off in October for the "Tattie Holidays". Trouble is that now school children just hang around the house with nothing to do for two weeks in terrible weather, so the Tattie holidays only succeed in messing up our lives. Can you tell I am not fond of this time of year?

At any rate, the boys and I have plowed into our two week purgatory with high hopes, taking walks, eating hamburgers, and trying to get some things done now and again with our days "off". Adam is not in a happy-to-stay-at-home phase so we're forced out a lot, and the rain the last two days has not helped. But we are nearing the end of our first week and still smiling. A little.

Honestly, holidays are the most psychologically depressing time for me. They are the days and weeks when I really see and feel just how different Adam is from other children, and how much is not available to us that others have at their disposal. Quite honestly, I get very jealous. I see other friends who stay at home and watch movies with their children on rainy days, or bake cookies, or paint pictures, or read stories. I see Caleb who would love to do all that, and then I see Adam who would start throwing things out the utility room window (like my courgettes!) and break all the paintbrushes, etc. I see the gap that lies between the life I would like to lead and the life that is mine, and it's all I can do to pray that the Lord would grant me a little bit of hope, that He would grant Adam a little bit more development, that He would grant us all a little bit more patience and humour with each other.

It's not easy, and I often struggle to find the balance between leaving enough space for us to experience each other and planning so much that the house of cards crumbles. Today I lost the plot because I had forgotten one thing that led to the collapse of another thing. And stress, and rushing around. All totally not helpful to someone who is wanting to learn to just be. I do pray every night that I would be forgiven for my terrible behaviour of the day, and be loving and gentle toward my children the next day. But I pray that every night. So maybe either what I'm praying for is not quite right, or my standards are too high? I actually did think today, "you know what? Tomorrow I'm going to shout at the boys at least once, just like I do every day. So let's pray for something else tonight, ok?" Maybe that something else would be the ability to accept the gifts that are right in front of me, instead of wishing for those that I think would be better. I'll let you know how that one goes.

Wednesday, October 6, 2010

Guest post opportunity

My lovely friend Amy Julia Becker has graciously given me the opportunity to contribute to her blog, Thin Places. It was a chance to write about Adam, a chance I never turn down! The feature is called "Perfectly Human", and I highly recommend going back and reading previous posts if you have time, they are wonderful. It was truly a tough act to follow!

See it here. Hope you enjoy, and hope you forgive me for letting that suffice for today.

Thursday, September 23, 2010

The comments keep coming

If any of you looked at the last post that I referenced, written by my friend Amy Julia Becker, you should have a look at her most recent post. You can click there or on the link on the right. It's worth looking at to see, written in black and white, some of the horrible things that people say about "those children." And Amy Julia's surprisingly calm and thoughtful response to it all.

The comments she quotes might surprise some of you, sadden or pain you, but they have been heard by all parents of disabled children. Yes, even me. I said in my comment to her that one time a mom, a nice, upstanding, middle-class mother, said to me in the park "I could never have one of those", referring to my Adam. She wasn't being malicious, she was being both honest and completely transparent in her ignorance. She is probably a person who has never had anything go wrong in her whole life, so why should she start by welcoming a defective child into her life?

I get it, that we humans like choice, we like getting things right and things going right in our lives. We have emotions and thoughts that are occasionally painful to others or painfully stupid, and sometimes we let those loose on the world. It doesn't bother me, because I am happy with my choices and with our family. But...

I still can't figure out the but. There is definitely a but there...maybe it's that protective impulse to want people not to say or think those things because someday Adam may learn of it. I guess also it's a desire to want people to at least be willing to see more, to be open to more. To consider for one minute that a child with Downs, or cerebral palsy, or Edward Syndrome is just as wonderful a gift to welcome as any "normal" child. I want people to see that life is complex in its imperfection, and running away or trying to shield yourself from that imperfection just limits you from...well, life.

I'm pretty sure you don't know what you can't do until you try/do it. But maybe that's just me. And no, just to set another myth on its tail, you don't need superhuman powers to raise a disabled child. You just need to do it, same as any other child. I'm not special because I'm caring for Adam, I'm special just like everyone else on this planet. And blessed because I'm caring for Adam.

Wednesday, September 22, 2010

A really good article

A friend of mine/ours named Amy Julia Becker has written a post for In it, and in a previous one, she talks about her experiences as a mom of a child with Down Syndrome. I'll have to look back for the link to the other article, but the link to her most recent one is here. My comment is number 64, but the wealth of viewpoints in all the comments is worth taking a look at if you have time.

Monday, September 13, 2010

Whirlwind (Whirlpool?)

It's been a rather full and quick few days, so I'll give you a rather brief and compact summary of it all!

Daddy came home Friday evening, safe and sound though late thanks to British Rail. The boys and I toured Union Square mall while we waited, making sure to exhaust all fun potential in the escalators and buy a birthday present from a local shop. When Daddy came out of the train all eyes were on him and his 75 pound bag (weight, not price!). Whenever he goes to Oxford to work with Mr Bernd he always takes a lot of books, and this trip was no exception. He still had room in his bag for some gifts for the boys, though--this time two hand puppets from an Oxford toy shop. Still haven't decided who is the mole and who is the fox, but they are sweet.

The boys then spent most of Saturday with Stevie, our angel from next door, while Mommy and Daddy did their workshop for Welcoming Church Forum. If you want to see what that's about, look here. Stevie took the boys to the beach where Adam had his first ever birthday party. I don't know how many people wait until their child is 7 for them to be invited to their first birthday party; needless to say it was a fun event for him and us. Sadly we couldn't be there, but Stevie told me all about it and it sounds like the kids (and Adam) had a blast. I would have been nervous about him, but it was a girl from his class with Down Syndrome, who I know for a fact is in love with Adam anyway, so I figured he was in good company! They all had a great time, and we had a lovely day on our end discussing issues of disability, worship, inclusion, belonging and growing as the Body of Christ with 18 people from around the city. Day well spent, four very tired people at the end of it!

Sunday, and a lovely church service and back into the groove of the swimming club. This time Daddy joined us, and by 5pm again we were all warm, tired, and ready for a pizza. What a quick weekend!

I'll have more this week on further developments in Adam's school and education experience. It is not great at the moment, for reasons Adam--bless his heart--cannot express to me but thankfully his teacher can. I am still trying to find the right way forward, the right people to talk to, and the courage to put up the fight that I suspect is coming. Pray for me, and for Adam, that we would be able to get him the support he needs to enjoy school and get as much out of it as possible.

Off to bed!

Wednesday, September 8, 2010

Drop that corset

I've just finished reading an excellent book called Unsqueezed: Springing free from skinny jeans, nose jobs, highlights and stilettos. This book is written by a friend of mine, Margot Starbuck, whom I met in Durham during our sabbatical year there. I knew she was writing a book on how women view their bodies, but I did not know exactly what to expect. After reading it, and after literally getting the chills during the Epilogue, I can easily and highly recommend it as a book that goes to great lengths to challenge our modern, self-focused and very destructive culture's ideas of beauty and self-worth.

The best part about it all is that Margot hasn't written a "how-to" book that simply turns a blind eye to issues we all face. She has linked our value and worth directly to knowing that God loves us and has already accepted us just as we are, and striving to love others both near and far as a means of reversing our tendency to navel-gaze.

The first step I've taken since finishing the book is to join the True Campaign that Margot mentions, which is a great resource for finding godly self-worth in community and has lots more ideas and resources available. Check it out--just click on the handy blue button to the right! I also haven't taken a shower in three days, but that's maybe a step beyond what most average people would attempt in their first week.

I do think this stuff is important, mostly because it goes so much farther than how much we eat or don't eat, or buy or don't buy, as Margot also discusses at length. How we view ourselves has a direct connection to how we view others. Control has become the most prized word in all Western women's vocabulary, and yet it's possibly the concept most subtly detrimental to real relationships--under the guise of being good stewards we are ultimately losing out on what it means to be with and for other people.

Trouble is, this includes our children at times. At the moment I have two boys, but I don't for the world think that my views of myself won't rub off on them in some way. And I hesitate to say it, but girls are way more dangerous and vulnerable to see themselves how their momma's see themselves. We have to be careful. I want to be careful, and that's why I want to join a community of others who also see poison in how the world has conceived beauty and worth.

I would love it if anyone else wanted to join me in this...maybe we could all read Unsqueezed again together? Maybe we could not shower together? (ok, just testing) Maybe we could just all agree to stick our tongues out together at a society that tells us we're not OK exactly as we are because it's just not true. It's not true at all.

Saturday, September 4, 2010

Cheesy recipe

While on the phone with my mom tonight, I mentioned that I had made a cheesecake yesterday that I was certain was the best one I'd ever made. Really. And I've eaten nearly half of it, so I am very clear on this point.

Not that anyone needs more recipes, what with all the dot-com resources available, but I will post it anyway for both posterity's sake and mom's. It's an American recipe made by someone who has been in Britain for 12 years. It might help those Americans who are cooking in Britain...might confuse those who are not.

Cheesecake recipe, amended from the Pillsbury Cookbook (c1989!):

2 cups biscuit crumbs (I used digestive biscuits, which turned out yummy)
1/2 cup butter, melted

Whizz the biscuits (aka cookies--British lingo, folks) in a food processor until fine. Melt butter and mix together. Press into non-greased 10-inch springform pan. Now, two things: first, I had to use a 9-inch pie plate, which worked fine. Also, I greased it before I read the whole recipe, so I cut a piece of baking parchment (aka wax paper) into a circle and pressed it into the bottom. I think this helped with cutting and serving.

3 eggs
2 x 300gram packages cream cheese (again, metric system makes things tricky. And don't use light cream cheese--I did before and that's why this one is better!)
1 cup caster sugar (fine sugar used for certain recipes, dissolves quicker)
2 teaspoons vanilla
1/4 teaspoon salt
1 x 300 gram package sour cream (if you are in the US, use slightly more than 1 cup. The original recipe calls for 3 cups, but this is absurd.)

In large bowl, beat the eggs, then add cream cheese, sugar, vanilla and salt, mixing well. My mixer packed in, so I used a wire whisk. Then add the sour cream and blend well. Pour into pan with crust and put into oven heated to 350 deg F (180 deg C). Important note: put a pan of water under the cheesecake as it's baking to avoid cracks in the top. Bake 60-70 minutes or until set. Mine was closer to 60.

Once baked, set aside to cool completely and store in fridge until ready to serve. I topped mine with store-bought summer fruit filling.


There, hope that makes someone else as happy as it made us. Too bad hubby's still away! :)

Thursday, September 2, 2010

Flying Solo

Brian is away for 10 days, so I'm going to pull the obligatory late night and write a little bit about the week. I just talked to him and he's doing fine, by the way--about to have the official book launch for his finally-published PhD thesis tomorrow evening. Funny how 15 years can seem like not such a big deal when you finally get to standing around with a glass of wine handing out signed copies, but then again I was only an observer!

So Adam's birthday was a good day--Sunday it was, and I still haven't downloaded the pictures (but I will)! We took a cake to church which was completely demolished. Either the Provost spoke extra long or it might have been a good cake after all. I say that because it was still a bit warm when I took the outer ring away and the whole thing sunk and splooged out in a very non-cake like form, but people still liked it which was good for me, bad for leftovers! Then we had lunch and took the boys swimming. A trip to the pool would not be complete for us without two things: Adam poops and we have to go change him in the middle of the swim, and Adam pushes a few kids off the jumping area who aren't expecting it and end up crying on their parents' shoulders. Both of these things happened. At least he usually picks the kids with very understanding parents--though someday I imagine I will end up with a black eye because of his "quirks." The boys were good enough to let me go sing with the choir in the evening, and had a nice "boy evening" themselves, so it was a great day all around.

The other major event of the week was Adam's trip to the dentist on Monday. I knew it would be bad, and having it immediately after school was not the best timing either. But that boy knew as soon as we walked in that he was going to have to do something he didn't want to do, and it was very nearly an ugly scene. I tried talking, cajoling, pleading, laughing, demonstrating and reprimanding: in the end I had to lay back in the chair with arms and legs enveloping my very strong now-7 year old and hold him down. The dentist helped, and after he realised that having a mirror in Adam's mouth was not a good idea, he carefully used his fingers and eyes to inspect Adam's teeth. He had 4.5 seconds to do this, while Adam was howling and before he broke out of my grasp. But not before he gave me another hernia and left the dentist and me sweating! I am pleased that our dentist is both young enough to manage the energy that Adam has/takes and nice enough not to curse us until we've left the building.

Luckily all looks well for now, but I know the dentist was thinking the same thing as me: what happens when he has to do some work?? Funny thing is, apparently Down's kids don't get decay as much but do get gum disease. Our only defence of course is brushing his teeth. A lot. At least Adam is a pro at brushing his teeth, something we (amazingly) have never had to fight over. Hopefully that will stave off problems for a long time. I guess we can add future dental work to the growing list of things that might require anaesthetic to carry out, but I plan to cross that bridge...later.

That's all for now--more (and more pictures) soon.

Friday, August 27, 2010

Marking the days

I haven't been so good at keeping up with the blog this week, and sadly cannot point to any amazing scientific discoveries, adventures in far-away lands, or even stellar cleaning binges to account for my silence. I think really, life as it's lived daily is just too occupying, and to sit down and write about it somehow makes me feel distant from living it. I prefer to watch the boys, go to the park, cook some food (occasionally), remark on the weather or do nothing at all rather than sit and ponder things on the computer. That, or I'm just too lazy to stay up past their bedtime and too brain-dead to remember what happened an hour ago!

At any rate, today I have been pondering Adam's birthday, which is coming up on Sunday. I have been asked a couple of times if he knows it's his birthday. I am pretty sure the answer to that question is no, though I don't doubt that when I set a cake in front of him and we all sing Happy Birthday to him, he might connect that activity to himself in some way. But as for understanding "Hey, I've passed another year on this Earth. I'm seven now. Cool," I don't think those thoughts will occur to him. I hate to sound like I'm writing him off, but for Adam, personal reflection does not seem to be part of his repertoire. I like that about him, that he doesn't spend time--or doesn't seem to--seeing who is watching him, wondering what they are thinking about him, or worrying about how much or how well we will celebrate him on his birthday. For him it's another day to play and be with us, and lo and behold--Cake!

The slight downside to all this, however, if I'm being honest, is that I have to reorganise in my own head what celebrating a birthday means. If Adam couldn't care less about presents, will eat cake if I feed it to him (with custard, please) and does not ask for any special favours to mark "his special day", then what exactly does it mean to have a birthday at all? In the usual sense, we ask kids what they want, figure out what will make them happy, and get that for them to open and enjoy for hopefully longer than a day. But what does Adam want? I asked Caleb this question, and he had some good ideas, but we both agreed that what Adam ever really wants is to go to the park, or swimming, or run naked along the beach into the water and back. Ok, seems easy enough to handle that.

But I still found myself feeling that Adam would be missing out--or I would be shortchanging him--if he had no presents at all. So Caleb and I traipsed to the store to find something for Adam, and we actually did pretty well. But my thinking behind it, and what I asked Caleb to do, was think of things Adam can understand and manage, and double check that with the second question: "would you play with this with him?" It seemed to work well, and I found myself more pleased than usual with the prospect of not only giving something to Adam in the traditional sense, but hopefully engendering an opportunity for them to interact together. I won't tell you what we got him though until after Sunday--it's his birthday, of course!

So, I reorganise my head thus: Adam's birthday is an opportunity for us to look back and remember the amazing night/morning he came into the world, to be ever grateful for all that he's come through in his tough little life, to review photos and movies from last August and see how far he's come in a year (about 3 inches far, to be exact!), and to be glad for today to be with him and enjoy all seven of his years at once. Gifts, fine. Cake, great. But what's special is that we have the chance to love and celebrate people at all in our own fumbling ways.

by the way, some photos attached from last year so you too can enjoy the progress.

Thursday, August 19, 2010

A Few Things that Prove I'm Human

also known as: Why I Won't Ever Be Really Important or Famous.

I realised today that I've sent Caleb to two days of school now with nails like claws. Not clean claws, either: really jagged, dark, dirty claws. He thinks he's a tiger. I think his teachers think his mom is a loser.

Not to mention the holes in his jeans that were there last year. I did buy iron-on patches, I just can't seem to get my hand to move itself to the iron.

Yesterday I walked to the Chinese market to buy cornmeal. I did this because my friend Marieke (thanks, Marieke!) told me they sell it, and I had a hankering for cornbread to go with the beans and rice I was making for dinner. Cornmeal found, purchased, brought home. Realised after dinner was over I never actually got it out of my bag and used it.

Today I managed to make the cornbread, to go with nothing in particular but still had the hankering. Realised after dinner was over it was still sitting warm in the pan on top of the stove, forgotten by its maker. Humph. We did end up eating it anyway, for "dessert", and I'm still about to pop hours later.

The list goes on, but I'm out of steam. You get the picture anyway! All joking aside, though, we are doing well and making progress. We have decided to do up the boys room (for the boys), and are making headway with removing all 5 layers of wallpaper that were previously on the wall. I am looking forward to when this job is done, not least because then we can actually walk around in our flat again! I'll have to post some pictures soon for posterity--and to remind ourselves of our sore arms and wrists!

Tuesday, August 17, 2010

Another end, another beginning

This is it, the last day of summer holidays. What a full and fun summer we have had--it almost seems too quick that the boys are starting school and nursery again tomorrow, the end of the lazy days routine and beginning of discipline, school uniforms, packed lunches and book bags. And yet it is time, as Adam has been bouncing around like a wild man for the last two days, creating all sorts of trouble (but don't tell his teachers!!) He's starting Primary 3, and time will tell if it's a good fit or not, but I know without a doubt that he'll be so glad to see the taxi in the morning and his teachers' smiling faces in the classroom. Oh, how I wish he could tell me about it with his own words when he gets home! Maybe some any rate, it's a good job we're through with jet lag and back to normal, as Adam's taxi is coming at 8:15am!! I had a dream last night that the taxi came and his bag wasn't packed yet, so I made sure to do that this evening. We're ready--bring it on!

By the way...I seem to be comfortable with telling more people now--and word gets around quickly in these parts--so it seems safe to write it out here: We are expecting our third child in March! If you have seen me in the last few weeks it might not have been difficult to surmise--the green look on my face, sitting down every five seconds (me who usually runs around all day!), refusing to even smell food at most meals..."morning" sickness is a total joke: this has been 24/7 sickness for sure! This kid (a girl by everyone's reckoning, but we'll see in 6 months) has got me beat, but I am often and gently reminded that this is a blessing and we are indeed very excited. I have unfortunately lost enough weight in these last few weeks that having a huge bump seems a distant possibility, but I am ever hopeful and there are many weeks left (29 to be exact!)

We'll be sure to keep you posted!

Monday, August 9, 2010

A view from the top

Today was the perfect, a just-getting-over-jet-lag kind of day. Except that we're just starting to get over it, but never mind.

We slept 15 hours last night. For those of you who know us, let me say that again: We slept FIFTEEN HOURS last night. Whew, it was good. And even though I got up last (at 2pm!!), I earned it with a few false starts during the night and one round of "midnight" snacking at 3am. Adam sawed his way straight through, as did Dad, and Caleb needed some help now and again but overall did well too.

Then we used our energy to go and hike, all the way to the top, the largest mountain in Aberdeenshire called Mither Tap, or Bennachie. Adam did a stellar job, walking with one or two exceptions the whole of the 4 km route, and did the best up a long section of stone and rock steps toward the top. Caleb never needed an ounce of help, and stopped my heart a few times bounding from rock to rock at the peak. It was an amazing day, and we enjoyed the view and a small snack at the top where we also found, to my great surprise, that one of the other hikers is dad to a little girl in Adam's school. One of the others pointed to a great big black blob on the horizon that ended up to be a rainstorm. Luckily we were back down in the trees by the time it hit. We drove around for a while and then had dinner at a local pub where the boys wrestled on the floor for a while to amuse the tired parents.

I have to say I find it amazing and more than a little ironic that that rain turned into one of the biggest storms I've ever seen in Britain tonight, complete with lightning, thunder, torrential rain and hail. I waited three weeks in the states to see this and saw nothing--my faith in Aberdeen to shock and delight on occasion has now been restored!

Sunday, August 8, 2010

And then it was over

I thought I would write some when we were in Texas, but alas, we were too busy...having fun, talking, hanging on the porch enjoying the faintest breeze, watching kids race each other and splashing in the pool, eating, talking, posing for pictures, sharing snow cones on a hot afternoon, hoping for thunderstorms (that never came), talking, and so much more (talking!). No wonder sitting on the computer never even crossed my mind!!

I have to say that was a great vacation--10 days in Orlando, 3 days driving across four states to arrive in Texas for another 8 days. It was so good I can even say it emphatically after we have returned to our normal life once again. Thank you family and friends, for giving us a great gift of life, warmth (not just the heat!), fun, conversation and memories to get us through another year in Aberdeen. We love you all!

Speaking of our return, it was a wonderful trip and we are glad to be home. Caleb has already said twice today: "I can't believe we are home." I think maybe he's as delirious as the rest of us from lack of sleep, but he's right--seems like we've been away forever this time, though nothing really has changed. I asked the taxi driver if there had been any exciting events in the last three weeks. Nope. Oh well--one very exciting event restricted solely to the garden allotments on Powis Crescent is MY garden--it's huge!! I can't believe the size of the pumpkin plants, all 5 of them! We have enough lettuce to be vegetarians for life, beautiful flowering poppies, parsley that's taller than I am, carrots and strawberries out of control. Again, another gift, especially since gracious others did the watering for the last three weeks (and apparently God watered for us a few times too!)

The flight back was fine too, and again I have to say that the boys amaze me with their flexibility and tolerance of travelling. They were wonderful, and even slept for 2 solid hours on the plane. We had not even one minute of delay, no trouble with customs, and no lost baggage. Again, grateful.

And now, tired. See you all again when I can see straight!

Tuesday, July 27, 2010

The Recap

As I write this I'm sitting by the pool, it's 6:20pm and about 95 degrees, at least 90 in the shade. The kids are enjoying the only coolness afforded outdoors and playing in the pool with Dad, who arrived on Saturday. We were so glad to have him, not least for another pair of hands to chase, hold, catch, feed, clothe and play with the boys! I have to admit having grossly overestimated both the time and the desire I would have to sit and blog when there is so much playing to do, but we'll try to catch up here in a quiet moment.

This is our last day of the Florida leg of our holiday. Tomorrow we leave in the red Ford Explorer, aptly named since we will be exploring the southeast corner of the US on our way to Texas for Brian's family reunion. The boys are excited and so are we to have our first family US roadtrip. I wonder what we will find to explore with them? It's funny, trying to explain what a motel is to a four year old!

The week past has been given to many different exploits, most prominent being the Seal World Aquatica water park, the Daytona Nascar speedway experience, and of course, The Magic Kingdom. All three were memorable for different reasons, and not least because Adam just could not deal with any of it. I have been surprised, in fact, by how little he enjoyed any of what we have done here in terms of large, corporate entertainment. I didn't know what to expect, of course, but I thought surely we would be able to find something somewhere in this haven of dreams coming true that would appeal to my little autistic boy of almost seven. But really, the only things he enjoyed were swimming around the lazy river at the waterpark--something all of us enjoyed, in fact--watching the Imax movie at the Nascar, and sitting on the bench in the shade with Dad at Disney.

Not that the heat has helped--the poor boy has been sweating non-stop like the rest of us. But I try to see it from his point of view, he whose hearing and vision and brain workings are a complete mystery to most doctors and even to his parents. Adam couldn't care less who Mickey Mouse is, or why we should wait for 30 minutes to sit in some little plastic car and spin around fighting "the evil emporer Zurg", or who these funny people are in big costumes dressed like a duck. Adam likes to play and be inventive and be active, and I think a lot of his trouble comes from walking to stand in line, or sitting and waiting for a show to start, and engaging with a world that is not real. He deals in reality, and certainly in the present, so almost nothing in this imaginary, happy, dreamy world matters to him. The happiest moment for him was when, at 6pm, we said OK Adam, time to go home. He immediately made the signs for "home" and "eat" and started walking toward the exit! Sorry, Mickey--you just could not beat the pool for this little boy. Try again Walt, and when you've designed a theme park for kids like Adam who need reality and whose dreams don't depend on being cooped up in lines and close, dark, noisy quarters, we'll be there.


On a brighter note, Adam has been full of music and facial expressions the last couple of days, showing that he is not traumatised by this environment. He is resilient, as usual, and full of life. I think we all have enjoyed this phase of adventure, though I can't say we're not ready to move on to the next one.

See you in Texas!

Wednesday, July 21, 2010

Dreams Come True

As I write this, it is 10:25pm and 81 degrees outside. Feels positively cool...I had a lovely walk this evening at sunset, taking a detour every other house through the sprinklers that people had on to water their lawns. I was grateful that some people had been a bit overzealous and were watering the road (and me) too! Apparently it will be a record high in Orlando tomorrow, as in 96 degrees. I will let you know how that works out for us, but I can already say there will be a lot of swimming done! After that we are in for a few days of thundershowers which I am already looking forward to.

Today we pottered around Orlando and saw a re-creation of an old town in downtown Kissimee. It was fun, but hot in the middle of the afternoon. We took the kids on some rides and looked in the shops. Funny thing was, I popped into a Shoe City to look for replacement sandals for Adam, whose high quality Asda sandals broke earlier today, and found that the proprietor is from Edinburgh! We had a nice chat for a few minutes--made me think about spending the next 20 years in Aberdeen like he's spent the last 20 years in Orlando!

Yesterday we went to Disney's Animal Kingdom, our first big expedition for the whole family (minus Brian, who will join us on Saturday--roll on Saturday!) As you drive into the grounds there is a massive sign overhead that says "Where Dreams Come True". I have to admit wondering internally exactly what dreams I might be expected to have, and the only one I could come up with is that we wouldn't melt and I would be able to handle Adam well. In that sense, my dreams came true and we had a lovely day, including mango shakes, a Nemo musical, lots of animals to see and a Wild Safari Ride complete with elephants and a lion. Personally, I was glad that lions only hunt at night!

One thing to note is that I obtained a disabled guest pass for Adam for the day, which basically meant a red tag to put on the stroller we rented (for 31 dollars, yikes!). This tag allowed us to bypass the regular queues for rides and go straight to the front, which really came in handy at the safari ride. But one thing I found peculiar is that in the shows, the disabled seating was at the back, so far back that I had trouble seeing, let alone Adam who doesn't focus on anything more than 10 feet in front of him. I was particularly interested in a blind girl who was sat next to us, wondering how Mr Disney can justify putting her as far away from the show as possible. Maybe he would say it's a Small World? Anyway, I'll be curious to see what the Magic Kingdom will be like, but I already know Adam is a pro and will be a fun companion no matter what, along with his brother and the rest of this motley crew.

See you soon!

Monday, July 19, 2010

Sticky Monday

I've got quite a bit to catch up on, so this probably won't be the most clear and concise blog post. Then again, the busy and rambling nature of life with kids might better be represented by a rambling narrative of that life, so here goes.

First of all, last week was great and marked by Adam's participation in his first ever sports camp. I say "camp", but actually it was just two hours every day of sporting activities at a local gym with a few other kids with special needs and some lovely coaches. I like the environment, because no matter what Adam gets up to, they never seem flustered. If they have to chase him around, it's fine. If they have to pick up his shoes from the far corners of the gym, that's fine too. Even when he escapes every five minutes, they just go running after him with a smile, though they did take to calling him "Houdini", and for good reason! The kid can surely disappear when he wants to!! I wasn't too sad to be spared 10 hours of it! :)

The camp afforded Caleb and I the chance to do some gardening, shopping and resting, all of which we enjoyed. We needed it too, as our holiday was looming large and I needed to get organised. We left yesterday, Sunday morning, and arrived in Orlando, FL at about 2pm. That's when it all started to get HOT.

Heading to Aberdeen airport we all needed sweaters, as it was only 55 degrees outside. All the flight details and transitions went really smooth and we had absolutely no trouble traveling at all. Let me just say that the boys are professional and wonderful travellers. They didn't give me any trouble, and were so patient as we waited in this queue and that queue. The first flight was only 45 minutes, and we didn't do much apart from sit. We stopped off in Manchester airport, but didn't have time to see or do much as getting from one place to another took most of our time. Then we got on the "Big One": the Virgin jumbo jet.

This was a very full plane, but we were comfortable in our little row of three seats, tucked in by the galley. The first meal was a bit of a wash, especially as I wasn't feeling much like eating, but we did manage to piece together enough to make the hunger go away. Then the movies started, so Adam and I said bye-bye to brother! Actually, Adam wasn't interested in listening at all, but he did watch some people dancing and I watched a bit of Shutter Island.

After a while we all had a bit of a doze, which made us feel so much better. Then, before I knew it we were touching down in Orlando and eventually meeting Oma and Opa at the airport. They took us in their car to a grocery store and then to the house we are staying at, where we met up with Aunt Diana and Uncle Brian, and cousins Micah and Kaitlyn. We all had a very nice swim in the pool, a good dinner, and went to bed early.

Other than a few blips at 2am and then again at 5:30, we slept from 8pm to 7:30am this morning, much better than I had expected. Then we headed to the park, where I noticed two things. First, it's hot. The hottest point of the day is about 5pm here, so at 11am it's not yet reached the peak, but 90 degrees was still feeling pretty warm. And sticky. But we love it! We won't complain since it's the only proper heat we'll get for a long time yet.

The second thing I noticed is that hornets' nest in the playpark we had gone to, but only after Caleb inadvertently stepped in it and got stung four times by hornets. Nasty little buggers. He cried so hard for a while and then settled, but even now he still says "Mommy, my stings hurt." Poor sweet boy. Well, at least now we've got that out of the way, hopefully it's all fun from here.

Friday, July 9, 2010

Summer: Week One

The week is finally over. I don't say this to mean that it's been a drag, just that it seemed much slower than any other week I've had this year. I don't know exactly why that is, except to surmise that maybe I take a while to acclimatise to the slower pace of being fully with kids. I'm used to having a little break now and then to do my own things, which surely speeds up the pace. Then again, I had an afternoon off last Wednesday, generously donated by my husband, and it seemed to drag too. Not sure why...we have lots of fun things to do, and we've had great weather by and large. Maybe it's that summer vacation looming up in only nine days that has my head in the clouds? Or maybe it's some other exciting things on the horizon, even farther away? Probably that and the fact that I can't do anything toward them because, again, I'm with the kids! Oh well, that is the point of these seasons, isn't it--the relaxing into what is and not what can't be right now. I really am praying that I will settle down soon and enjoy these moments fully because they really are fleeting, despite what it seems.

This week we have had some firsts and lots of completely normal. We've been to at least seven different parks, 10 hours pushing boys on swings (slight exaggeration), 4 hours spent indoors because we'd had too much sun (major exaggeration!), one really nice walk, a couple of fun play sessions with friends, a tiny bit of extremely uncomfortable shopping, and some good solid nights of sleep at the end of it all.

Among the firsts to note were Adam eating raisins, which I have already mentioned. Another was Adam beginning to show interest in riding the push-bike he got for Christmas. We also had our school sessions in the mornings, where usually Caleb would draw a picture and do some letters to go with it while Adam worked on the letter A. No major progress yet, except that he will sit at the table for 15 minutes and work with me (and throw the crayon at my hand, and on the floor. And oh yes, he's strapped in to his chair too, but that doesn't really count as cheating)

Next week brings the first sports club Adam will go to on his own every afternoon from 1-3pm, and Caleb's first playdate away from us all day with his friend from nursery. I bet you can't guess who is excited that these two sessions happen to overlap for an hour and a half on Monday? :)

Here's enjoying slow days...

Thursday, July 8, 2010

Mud and Molasses

I'm so tired, I feel like the above: mud and molasses. Mud drenched in molasses. Ugh.

Having said that, the boys and I were out today from dawn till dusk, or something like that. We had a lovely playdate at the park with Caleb's friend from nursery Aiden and his mummy, then an indoor play session at good ol' KC Kangaroo's, so that mummy could talk to Chioma (her friend!) It was a "hot" day with lots of sun, laundry, cooking, phone calls, and only one forgotten thing on the to-do list. Well, I might have accidentally forgotten to write most things down on the list in the first place.

Oh well, it is summer after all.

Monday, July 5, 2010

Summer Holidays: Day One

I have set myself a goal this holidays, and hopefully not an overzealous or irrational one: I want to spend 30 minutes each day doing something educational with the boys, both together and separately. This might not seem like a big deal to you, since most moms I know seem to educate their children easily with each natural breath they take in any given day. I, however, was not born to teach, and find that my creativity is somewhere just below ground level in this area. Also, when you add in the fact that Adam's needs mean he is resistant at best, completely crazy at worst, I tend to give up quick.

That's why I figure that 30 minutes a day, hopefully just after breakfast, is a small enough goal to be manageable. We shall see who manages in the end, and since it's only been day one I will hold off from giving my opinion just now.

This morning we did singing. At least, Adam and I did singing. Caleb and I told stories. We'll call it a verbal foundation for learning, shall we? But now that I know Adam can count we'll work on that some days, and on beginning to write his name...luckily for both of us half his name is the same letter. I'm not being flippant: I know the immensity of the task before us, and it's best to appreciate all the positives that we can! Caleb has mastered the letters in his first name, though they come in all sorts of different variants and I have yet to see them written in the right order! So we all have something to work on.

After "school" we went to the park with Auntie Meg and the boys played while the mums chatted, which was a very nice gift. Then we met up with Daddy and had a lovely walk to the top of a nearby hill. We hid in a thorny bush when the rain came, and threw rocks and found sticks. Adam walked all the way to the top and back down, and had some raisins for his snack in the middle.

Wait, did you read that right? He ate raisins for a snack. Out of my hand. This is another wonderful first for Adam, who up to now would not take food out of my hand readily and certainly not dried fruit. I could hear the sound of doors opening as he ate each one--really, it is a wonder that we ever appreciate the small miracles of life, isn't it?

Another small miracle today was a workshop I went to this evening on Rhythms of Grace, a church service for children with disabilities started by a wonderful priest named Audrey Scanlan in Connecticut. She talked us through what she does, how she does it, and why she does it, and even included some Play-Doh exercises for us to do! The people who came were from all different corners of Aberdeen--it was again an event with a sense of excitement for what the future might hold for Aberdeen in terms of what churches are doing for children with special needs and their families. I am pleased to be working in this field as well, and look forward to taking Audrey's message further in the near future.

That's all for now--night!

Sunday, June 27, 2010

Beach day (shhhh!)

So, when left to our own devices, and the weather heats up to a balmy 75 degrees, what do two boys and a mum do? They go to the beach!

We were actually all dressed for church, but that last minute indecision hit and I'm a little ashamed to say I don't regret changing course! The boys and I haven't had too many unrestricted spaces to relax and enjoy each other in, without having something else to do or somewhere else to go. In fact, we enjoyed ourselves so much that we also missed our afternoon engagement at the swimming club, sad only because it was the last one before the summer holidays. But again, who wants to be swimming inside on the "hottest day of the year"? (not really, but the media like to claim it)

The beach was packed but we found a nice spot and settled down, near the river sheltered from the wind by dunes. This spot is our fave because the water is slightly warmer and there is no danger of getting doused by a wave. The boys played in the water for a while and then Adam started to play a new game. I don't know who started it, but he had this little rhythm of taking off his clothes (yes, all of them!), walking through the river a bit, then coming back to me and putting them back on. Then he would do the whole thing again. After a while we dropped the nappy and just had the shorts and shirt. Then after another while we spiced things up with a zip-up jacket over the shirt! Adam loved it, so much that he did it for an hour. Each round took about 90 seconds, so if you are the calculating kind of person you'll see that's about 40 times of clothes on/clothes off. But hey, he was happy, we were interacting, and the sun was shining, so it was very good.

I know I said I would post an update about the gluten free diet, and I haven't only because I don't trust myself to be reading in to things too much. I'm the first to admit I'm not exactly unbiased. But I really, honestly feel that Adam is more "there" now than he was 6 days ago. He has been much more verbal this week, much more switched on and cooperative (most of the time!), and much more settled, again not 100% of the time, but more than usual. Today's game was a new thing we had never done, and after he was (finally!) tired we laid down on the towel just looking in each other's eyes and pretending to sleep. "Eeep", Adam said, and pushed my head gently down onto the towel when I had looked up. Has he ever done that before? Heck, no!! That requires imagination and the ability to pretend, which Adam has never demonstrated having before now. Do I think not eating wheat for a week has made this happen? Can't say. But again, it's the subtle change in his whole demeanour that I can't put my finger exactly on but I can claim is there. It makes me excited--I will eat gluten free, dairy free muffins for the rest of my life if need be! (they are not good, at least not the ones I made. But Adam likes them, sweet boy!)

Anyway, two tired boys went to bed and now for the tired momma. So much for the filing!

Thursday, June 24, 2010


This morning I got a huge surprise when I was getting the boys ready for school. I was helping Adam get dressed, and Caleb, as usual, was delaying the process by wanting to play hide-and-seek: "You count and I'll hide, mom," as he flops down in his bed and pulls the covers over his head. I dutifully started to count, "One..." admittedly in a bit of a monotone as this is a very common game, when all of a sudden Adam's eyes lit up. "Two, three, four, five. Yeah!" He was clearly counting with me, and seemed quite proud of himself when he got to five, clapping and smiling. It was amazing, and very humbling, as I had no idea he could do that. We have been counting all afternoon too, and he really seems to enjoy it.

If you heard any of the words on their own you wouldn't know what he was saying, but his inflection, and the fact that he stayed with my timing too, showed that he knew what we were saying. Needless to say this gives me a lot of hope. It makes me think of his summer school teacher in Durham, Ms Jen, who very emphatically said to me that Adam is capable of learning a lot, and should not be underestimated. How right she was to say that.

This of course comes on the same day that we got a letter home from school saying that Adam would be moved up to Primary 3 after the summer. That's a jump from Primary 1 to Primary 3 for those who aren't up to speed, i.e. going from first to third grade. This is apparently a city council policy that children should be grouped according to their age category. This is also entirely ridiculous and will be fought by me every step of the way. There was a reason I held Adam back, besides the fact that we went to the states for a year. He was not ready, and still is quite developmentally delayed. They are already having "trouble" with him in his current year, so I don't see how moving him two years up will help matters. I'm not sure how to go about it, but believe me, if the boxing gloves have to get dusted off (they never seem to acquire much dust anyway!) they will.

Following on from yesterday's tests, there is nothing new to add. Bit of dried blood in his ear canals still, but otherwise you wouldn't know he had anything done yesterday at all. I still find his hearing a puzzle, but we've learned enough in nearly seven years not to take the doctors too seriously, and to take seriously instead that Adam is thriving (counting even!)

One more little surprise, albeit a few days old: Adam has his first adult tooth coming through!! It's a bit of a snaggle tooth already, poking up from behind all of his four bottom middle teeth that are ground down to the gum and still very firmly rooted in place. I tried to get him registered with a dentist, but the one I called specialises in cosmetic dentistry. Maybe something to think about for the future, but obviously not the right call just now. Will have to wait, hopefully not a year, for an NHS dentist instead.

That's all for now...time to read and enjoy the evening sunshine (for another 2 hours!) (and it's quarter past 9pm!)

Wednesday, June 23, 2010

Proof of why you shouldn't take tests

We had Adam's hospital appointment today for his hearing test under anaesthetic, which went pretty smoothly overall. The totally disappointing fact is that we know absolutely no more now than we did 12 hours ago before he was doped up and gassed out.

Despite being without a hubby this week, everything went well this morning getting to the hospital. Caleb was dropped to a friend to play with her daughter before going to nursery, and Adam and I had our pick of parking places at the hospital (not a common occurrence!) and pitched up at the desk at 8am exactly. By 9:10am he had the eye drops and pre-med, which left him as dopey as if he'd been smoking something very wacky. Dopey, but cooperative. I didn't stay for the "going under", since that's not really my favourite part of the whole event. One hour later the doctor was at Adam's bedside to explain what they had found.

To summarise the details, both ears had lots of wax which was cleaned. Both ears were free of "glue" or liquid behind the eardrum which clouds hearing, and because of this the tubes were removed from both of Adam's ears. The right eardrum has a small hole in it (why? I never found out either) but it shouldn't cause any problems. Thus, the final result: both ears clean and dry, no tubes.

Then for the hearing test result, and this is the kicker (am I watching too much World Cup?): He had no response in his brain to anything up until 100 decibels. Adam can obviously hear to even the most casual observer, but his hearing tests show him to be profoundly deaf. Having quickly researched it, 100 dcb is equivalent to a snowmobile or a motorcycle. The doctor trying to explain this to me was as baffled by it as I am. What does this mean?

What it means, he surmises, is that Adam's brain must have developed pathways for sound to travel that are different from that of a normal person's brain, and therefore do not show up on their tests. In other words, and as he was kind to admit: They don't know how Adam hears. I guess now that I think about it, we are farther along from this morning. We now know to look at Adam and go by what he is doing rather than what the tests and experts determine. Hmph. Should have known that all along.

We were home by 1pm, and met up with brother for a quick lunch. Then, because it was one of those rare beautiful and warm days, we headed for the beach. We spent all afternoon on the sand and at the playground, had an ice cream cone, and came home to drop two tired boys in the bath and in bed. Sigh, job well done (or at least done)!

I do have to say that Adam, despite having been gassed out just a few hours before, put on the most stellar show at the beach that I've ever seen. He managed to strip off all his clothes and out run me down to the water, nearly diving in head-first! This is the north sea, after all, sun or no sun. To be honest, I think he may have had the edge because I was laughing so hard! :)

Monday, June 21, 2010

Horses and Autism

I just realised that I haven't written about my monumental experience with The Horse Boy last weekend. Sorry for the confusion, and for the fact that I can't do it justice just now. I'll give you the link to their website, and you can see for yourself what The Horse Boy is about when you have time. When I have time, I'll write about what I experienced at the Douglas Hotel in Aberdeen last weekend, and how it has shifted my perception of Autism just that tiny, and very important, bit.

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.

Sunday, June 6, 2010

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!

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.