Good Enough Mum

Braggin' on my kid

We got our copy of the speech therapist's report.  As measured by the test she did on his understanding of language (presumably the third of the three tests she did; for those who are interested, it's apparently called the Reynell Developmental Language Skills 3), he understood language structures at the level of an average four and a half year old.  This puts him just over a year ahead of his chronological age in language comprehension.

<pause for smug smile>

Since Sidheag asked: it seems that the signs of autism she thought he was showing during the assessment were problems with his social interaction - reduced eye contact and 'tendencies not to initiate social interaction or shared play'.  She also wrote, however, that his intellect will enable him to learn appropriate social behaviours and conversation over time.  Which is pretty much what I think, as well (hey, it worked for me...)  She's going to liaise with the nursery about using something called the Early Years Toolkit for social and communication difficulties, and get a colleague of hers who visits children at nurseries to do a repeat assessment in the autumn term.  I shall look forward to seeing what further complimentary things are said at that point about my brilliant son.

And the little one said...

Katie rolled from her back to her stomach twice this weekend (stomach to back is, of course, old hat by now).  The first time she got her arm stuck under her, and the second she ended up with both arms down by her sides and didn't seem quite clear on how to bring them back round in front of her, so I would not go so far as to say she's mastered the skill yet.  However, it's good to know that she can now, theoretically at least, rotate a full 360 degrees round her long axis.

Speech therapist

Jamie had his appointment with the speech therapist last Tuesday.  To clarify the momentousness of this, I will explain that we were put on the speech therapy waiting list over fourteen months ago, after having made our first initial inquiries about Jamie's (at the time) near-nonexistent speech development a couple of months before that.  Of course, soon after the referral was made it became a moot point due to Jamie's sudden decision to condense over a year's worth of speech development into a few weeks, and I am assured by our health visitor that if that hadn't been the case then she would have been liaising with the speech therapist for advice on what we could do to help him while he was waiting to be seen.  Which is, um... slightly reassuring.  Anyway, Tuesday's appointment was not in fact due to him finally reaching the top of the list (last February's referral will presumably just be discarded now, so we will never know how long we would have waited) but to the second referral, the one made by Dr M. after we saw him.  Presumably this got Jamie onto some kind of special super-duper list that leads to people actually being seen, as opposed to just ignored in hopes that they'll go away.

So, from one who has actually made it through the hallowed portals to a speech therapy appointment, here is what happened: First of all, the speech therapist explained that this initial appointment was for her to assess him and work out a treatment plan.  She asked us several questions about his interactions with other children and his speech, while Jamie entertained himself playing with her toy train and then moving on to reduce to chaos explore her other toys, her speech therapy materials, and anything else he could get his hands on. Then, she started on the actual testing, for which she sat the two of them down facing each other across a little table, with a cardboard posting box to hand.

She started with a box of cards with small pictures of ordinary everyday objects, asking him to pick out the items she named from the cards she held up and post the cards he picked into the post box.  The test moved on rapidly through more difficult questions, holding up three or four cards instead of two, asking him for several items instead of one, and sometimes describing them rather than naming them ("Can you find me the one we eat and the one we wear?"). The next test consisted of a set of pictures of people doing things, which she handed to Jamie one by one, asking him to tell her what each picture was of.  Finally, she got a book with flip-over pages, each one showing four pictures, and asked him to choose one picture each time.  This one, again, started off simply - she asked for things like the red car, or the little clown - and moved on through more complex vocabulary and eventually to some very complicated concepts ("All the girls, except one, were eating dinner."  "Which horse is not inside the field?")

Jamie did fine, managing to do nearly all of the assessment apart from the request for a list of four items in the first test and some of the most difficult questions in the third test.  I think he enjoyed it - at any rate, when she'd finished and left him to play for a bit while she talked to us, he brought one of her sets of pictures back to the table saying "Which one should you point at now?", which is his way of saying he wanted the game to continue.  In the second test, when he described the first picture as "Someone building a tower" and she asked him whether it was a boy or a girl, he not only told her but went on to include that information in his description of each of the other pictures she gave him.  In the third test, one of the questions involved picking out the girl who was splashing.  "She's splashing water on the 'b'," Jamie said.  He'd noticed the tiny identifying letters at the bottom of each of the four pictures - the picture in question did indeed have a 'b' appended to it.

The speech therapist's verdict is that he does indeed have features of autism.  She thinks his history of late talking would fit the profile of 'high-functioning autism' better than that of Asperger's.  Overall, his current language skills are very good - although she didn't have time to work out the formal score within the assessment, she says he was going well past normal three-year-old standards - and currently she doesn't feel he needs any treatment from her.  Her plan is to assess him again at intervals and see how things are going, particularly once he starts school.

So, now we're waiting on the Interview Of The Three Hundred Questions, for which we do not yet have a date.  I'm still boggled by trying to work out how on earth it's possible to think of three hundred different questions to ask someone on the subject of their child, but I suppose I'll find out.

It's April, so...

...according to the somewhat optimistic promise on the button that you may have noticed on the left of my blog, I am now supposedly blogging for autism awareness. 

You may also have noticed that I don't, so far, appear to have been living up to this promise.  This is not for lack of trying, but, as usual, for lack of spare time - I have spent the month so far trying to work on this post while feeling that blogging for autism awareness is something I might be able to see my way clear to finding a few minutes to do some time around, oh, say, September.  Of 2009.  Possibly.  But there is currently at least some of April left, so here is my first stab at a Blogging For Autism Awareness post.

If someone with a handy crystal ball had told me, a few months back, that I would be Blogging For Autism Awareness This April, I would probably have been fairly surprised.  I do not mean that in the "I never expected to find myself dealing with the world of autism" sense (that, I'd completely expected) - I mean that I would have been surprised at the idea that I'd think blogging for awareness was something to which I could productively contribute.  People already are aware of autism - everybody's heard of it, haven't they?  I wouldn't have had any particular inspiration as to what I should say to increase this awareness.  "Hey, everyone!  Did you know that some people are autistic?" doesn't really seem like a promising beginning to pad out to blog-post length.

After all, everybody knows the important stuff about autism.  Right?  We've all read the newspaper articles and the magazine stories and the heart-wrenching True Life stuff about Our Autism Nightmare or My Child's Terrible Affliction.  So we all know about autism.  Don't we?  Helpless, hopeless, a life-destroying disaster that renders a child incapable of enjoying life or doing any of the things normal people do, unaware of what's going on around him, and, barring miracles, devoid of hope for any sort of future.

In other words, the general public thinks about autism in pretty much the same way as it used to think about physical disability.  A few decades ago, that last sentence would have exactly described the kinds of attitudes a child in a wheelchair would have to face.  People talked about them as though they weren't there, assumed they were incapable of learning, working, or contributing usefully to society, and wrung their hands over the tragedy of it all.  Disabled people tried to point out that they'd actually vastly prefer it if everybody else shut up with the pity and the stupid assumptions and got on with something useful, like building ramps, but unfortunately nobody really seemed to want to listen.  Which, of course, is still the case to a depressing degree.  But, in general, society's attitude towards the physically disabled has improved a hell of a lot over the last several decades.  There's still a long, long way to go.  But if you heard someone today describing children in wheelchairs by gushing about what a tragedy it was, how awful it must be for them to have such hopeless lives, and how awful it must be for their families to have to bear such a burden, then you'd probably recognise that they were being both ignorant and offensive.

When it comes to the autistic, however, we think absolutely nothing of talking that way about them.  It's standard phraseology for any story about autism.  How often does it ever occur to any of us that we might be just as wrong - and causing just as much offense - as we would be if we talked about other forms of disability in that way?

Over the past few months, I've been reading a lot about autism, browsing through weblinks.  At first I was just trying to brush up on my knowledge of diagnosis and current treatment approaches, and the stuff I found when I Googled was pretty standard stuff along those lines - DSM criteria, early signs to look for, applied behavioural analysis therapy, biomeds, yadda yadda yadda.  And then, gradually, I found more and more links to webpages and essays that challenged a lot of the traditional views about autism and its treatment.  Quite a bit of the stuff I was reading was from autistic people themselves - the very people that we've always thought to be incapable of communicating.  They're voicing their opinions, loud and clear, on just what they think of society's attitudes.  It makes fascinating, thought-provoking, challenging, uncomfortable reading.  Turns out we've assumed a whole lot of stuff about autistic people that's wrong.

We've assumed that, because autistic people have a hard time speaking and often can't learn to speak at all, that this must mean that they can't communicate.  In fact, lots of them can learn how to communicate fluently in other ways - just as a deaf or paralysed person might find it easier to use communication tools other than speech, so can autistic people.  Many can type far more articulately than they can talk.  Others might benefit from using picture card systems.

We've assumed that, because autistic people don't seem to react to their surroundings, this must mean that they're not aware of them.  In fact, it seems the lack of reaction is more likely to be due to lack of processing/reacting skills than to lack of awareness - just as a totally paralysed person can hear everything you say despite not being able to respond to it, so too can even a severely autistic person.  (And... you know all those times people talk about what an awful burden it is to have an autistic child or how autism is some kind of terrible living death?  Yup.  If you're talking that way in front of an autistic person, or writing that stuff in a newspaper that they can read, or putting it on a television programme where they can see it, then that person is probably listening and understanding.  And is probably just as hurt and offended by having their life described in such a way as a non-autistic person would be.)

We've assumed that, because a life looks different from ours, it must not be worth living.  We've assumed that autism is a terrible affliction and that the only hope for people thus afflicted is for us to come up with A Cure, something that will get rid of that awful autism and let the person be just like everybody else.  In fact, it seems that most autistic people don't want that at all.  What they want is to have practical help with dealing with the ways their disability impacts on their lives, help that starts from the point of what they actually need rather than from an assumption that the most important thing is for them to look as normal as possible.  To be allowed to be different, as long as those differences do not harm others.  To have their opinions listened to.

As I read more and more on those subjects, I was amazed and excited and saddened.  Amazed by how little I'd really known about autism, after a lifetime of interest in the subject.  Excited by all that I was learning.  And saddened that these issues aren't far more widely known about.  The growing popularity of computers and the Internet mean that autistic people have more chance than ever before to let people know how they really feel about the way that autism is portrayed in society and about the treatment (in both senses of the word) that autistic people get.  But very few people know that these things are even issues.  In fact, the impression I've been getting is that a lot of people aren't even interested in hearing more when autistic people try to tell them.  People don't want to listen.  But we need to.  Otherwise, autistics will continue to be short-changed.

So that's why I'm blogging for autism awareness this April.

Explanation of the week

From my husband, as he shepherded Jamie up to bed last night after some after-dinner playing: "We're a bit late going upstairs.  The fish had to get in the camper van and go to Sainsbury's and look at all the numbers."

The Getting Of Wisdom

The world is a complicated place, especially when you've only had three years to learn about it.  But Jamie is making headway.

He knows, for example, that, just as you can form words from letters, so you can form numbers from digits.  It's one of the games he likes playing with the numbers puzzle my mother got him, the one with all the digits to be fitted into holes on a board - he'll work his way through composing the two-digit numbers in order, putting down each pair of digits in turn and declaring what number they make.  Thus, on one occasion, he picked up a 2 and an 0.  "Now, when we just put this one down," he declared, putting down the 0, "it just says 'twen'.  But when we put this one down, it says 'twenty'!"

Then, there are the mysteries of plural and singular forms of words.  Reading through one of his many 'My First Word' books, Jamie arrived at the section on 'Clothes' and was puzzled by the picture of the dress (not something a child of mine gets to see a lot of).  "What kind of..." He paused, considering correct grammatical construction.  "What kind of clo is that?"

But he's starting to learn more about different emotional states.  Barry, trying to get Jamie's computer to play one of his DVDs, explained the problem to me as he worked - there was some kind of problem with the DVD setup, and the computer wasn't happy with it.  "It's sad!" Jamie deduced triumphantly, pleased with his newly-acquired comprehension of how such matters work.

Yes, but can you get there by candlelight?

First of all - if you haven't yet responded to the post below this one, please scroll down and leave your comment!  And many thanks to those of you who've commented so far.

Meanwhile, a further bit of trivia for the Jamie And Katie Show:

As we ate dinner a couple of nights ago, Barry mentioned to Jamie that, some time soon, we might take him to a large toy shop in a neighbouring town, about thirty miles away.  Jamie considered this carefully and homed in on the salient point.

"Thirty miles?  We shall count to thirty," he declared, and did.  "How many miles is Mothercare at?"

Barry estimated it to be thirty-one miles away.  Jamie counted to thirty-one accordingly.  "So what shop is at thirty-two miles?" he inquired, on a roll now.

We do not, alas, keep track of the exact details of which shops lie on circles of each possible defined radius from our house, so were unable to offer him any very definite answer to this.  So Jamie moved on to asking how many miles Nana and Granddad were at and how many miles Granny Constance was at, and counting each of those while running in circles round the table (all this counting was far too exciting for him to sit still for anything as mundane as eating dinner).  What really impressed me was that, when Barry told him that Nana and Granddad's house was 120 miles away, he counted - correctly - by tens to get to that number, instead of trying to count all the way to 120 by ones.

"And where do you live?" he asked me.  I spent some time trying to figure out whether he was actually using pronouns correctly for once and did indeed want to find out where I lived or whether he was, as is usual with him, using 'you' to refer to himself and wanted to tell me where he lived, before it occurred to me that it was somewhat of a moot point since the answer was, after all, exactly the same either way.  I gave him our address (which, incidentally, he knows already, since he read the house number off our wheelie bin and we taught him the road name to go with it).

"And that is at one mile," Jamie concluded.  I clarified that, if he was talking about distance from here, then it was actually at zero miles.  But I was still impressed that he was grasping the concept.

Totally other thing that I wish to record: Yesterday he offered to help me put the laundry away.  I shall store that moment up and treasure it to sustain me through his teenage years.

And the message for today is...

Happy birthday, Mom!  Many happy returns!

Anyone care to join me in wishing my mother a very happy birthday?  If you want to help make my mother's birthday as special as she is, please go ahead and add your birthday wishes to the comments.  Let's see how many we can get!

The Jamie And Katie Show, Resumed

Apologies for the break in service there.  Katie's main developmental goal, for the past few weeks, has been to see how many times she can wake up during the night.  Earlier this week she added in the goal of seeing how long she can keep herself awake for at bedtime when she's meant to be settling.  Things do seem to have finally started to improve these past couple of days, but meanwhile, of course, time that I could otherwise have spent trying to squeeze in a quick blog post has instead been spent on trying to catch up on sleep.

Jamie's latest game, rather endearingly, is to pretend he doesn't know what's behind different doors in the house.  It goes something like this: He pulls the door to his bedroom or the bathroom closed, runs down to the far end of the hall, saunters back along, stands in front of the closed door, and announces "What's this?  It's a door!  And what's behind it?  Do you think you should open it, Jamie?"  I assure him that yes, indeed he should, and he very carefully pushes it open just far enough for him to slip inside.  Then his face appears at the crack in the door, wreathed in his usual huge grin, and he informs me as to what room it is.  Sometimes he will also inform me of the state of the lighting ("It's a dark bathroom!").  And, thusly, the ordinary everyday rooms in the house maintain their mystery and excitement.  As a bonus, I get regular reassurance that our bathroom and second bedroom are still there and have not, in fact, fallen off into any alternative dimensions.  One just never knows these days.

Oh, and he invented a new word - 'airlight' - to describe the look of dust motes drifting in the air.  I thought that was a rather good term.

Katie, as always, does stuff that is just as adorable in its own way but less amenable to anecdote (smiling, gurgling, grabbing hair).  But she did very well at waving a rattle around yesterday, so I feel she should get some points for that.

This just in...

Katie rolled over!  She did!  She rolled from her stomach over onto her back!

I know perfectly well that this is a normal age-appropriate stage of her growth and development which bears no relationship whatsoever to future intelligence level, but I still have to say: What a clever girl!