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, 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!