The Space Shuttle

After the aborted attempt at taking him to the cinema, and having finished our coffee & cake, we were wandering around the complex when a high pitched jabbering alerted me to something exciting The Tokoroth who was on my shoulders. He practically hurled himself to the ground in his excitement to get nearer this thing:


The Space Shuttle.

Essentially it is an inflatable obstacle course where you enter at the back (left) and overcome a few inflatable obstacles before a fairly daunting rope ladder leads you to the top of a very steep slide. He's pretty good in playgrounds and quite a tough kid despite his very sensitive nature so I paid up the pre-requisite £1.50 and led him to the entrance at the back.

The first hurdle was getting him to accept that this was the way on and that he couldn't simply reverse climb up the slide. I solved this by waiting until some other children clambered on and gently, er, threw him on (just to get him started).

He did a great job of climbing over and under the various hurdles until he got to the rope ladder. He looked at it, touched it, watched the other kids climb it and then sat down. He than lay down while children both half his age and twice his age clambered over, fell on or tripped over him in their desperate enthusiasm to get to the slide. The Tokoroth wasn't sad, unhappy, dispirited or frustrated he just appeared not to care that there was a ladder. So he played quite happily in the bowels of the thing while kids almost a third of his age stepped over, or on, him stopping only to give him a curious glance before rushing on.


"People rushing on by..."

Many parents fell in by my side anxiously watching their kids attempt the ladder. Concerned Mums and Dads voicing their concern that their little boy or girl could never manage the ladder, yet they all did and their Mums and Dads squealed with delight and bounded around to watch their offspring jettison down the slide.

All the while my son just lay at the bottom of the ladder, laughing and chattering to himself occasionally wandering over to smile at me.

"Go on, son!" I urged "Go up the ladder and down the slide!" He looked at the ladder, looked at me, smiled and ran back out the way he had come. Never mind, I thought, he's enjoyed himself plenty. He clambered off, ran around for a bit, and then decided to jump back on and the whole process was repeated. For almost an hour. Not a single other child in that time, even children in nappies failed to make it up and over. If you dragged a stranger of the street who'd barely heard of the term and said "point out the autistic kid amongst that lot" it would not have been a hard task.

As I ruefully watched him being the very definition of "autistic aloneness" I suddenly became aware of him stood at the bottom of the ladder and before I could even say anything he had his foot on the first rung and was starting to climb.

I think at this point, in my head, was something akin to "Run, Forrest, Run!"


...and he's off...

I watched for a few moments as he faultlessly ascended the ladder until he was out of my sight and then ran around to the front of the Shuttle where the slide was. After what seemed like several long minutes a little head appeared at the top of the slide.



A pause, a big grin, and he flew down the slide squealing with delight. He barely paused to acknowledge me before running back to the beginning to do it all again and again (and again). I cried. I cried tears of happiness and I cried tears of relief. I couldn't tell anyone and, even if I could, I couldn't have got the words out, so I just stood there, like a stupid fool, and cried and watched him go round and round and round again like the first 45 minutes had never happened.

I think what I learned today is that wherever he's going, he'll get there, but in his own time.

The Cinema

When Little M was about 11 months old I took him to the cinema. He was a bit of a fidget but lasted most of the film. By the time he was 2 he was a cinema veteran. Popcorn was very useful as an aid to keeping him in his seat.



I have tried the same with Tokoroth but even today, aged 38 months, this little fella will not even go inside the auditorium. Even armed with popcorn, Fruit Shoot and Smarties, as soon as we walked into the darkened cinema he was like a cat being lowered into a bath. He almost set off the fire alarm mistaking the panel on the wall for a light switch!

As children half his age filed keenly and quietly in, he sat rigid by the entrance refusing to be coaxed, bribed or manhandled in to see the film. He's small for a three year old but almost impossible to impose your will on without a tantrum that would have Esther Rantzen in your face inside five seconds.

Experiment abandoned, elder siblings left to watch the film, The Tokoroth and I retired to Costa Coffee in Waterstones where I caffeinated and unstressed while he quietly read and chatted happily to himself.

While this may appear to have nothing to do with autism (and it may not) it's just an example of how he is different from his siblings and some other children. It is though a good example of a criterion of autism spectrum disorders : peculiarities of hearing. Many children with autism have been suspected of being deaf at an early stage in their lives. Very few actually have a hearing loss, though they may not respond to their name and appear to be unaffected by audible changes in the environment. Conversely they can be more agitated than their peers by ordinary/loud everyday sounds. The Tokoroth puts a big fat tick in this box.

Although, maybe he'd just read the reviews and knew the film was crap...

Little M(y)

The subject line of this post is courtesy of a rather 'fab' new Twitter homey: @shinybiscuit aka Katie Taylor. Neither of us use the word 'fab' ever. Honest.

Katie had read several posts on Twitter I wrote about 'Little M' and duly thought 'he' was a 'she' based on it sounding like Little My from The Moomins, an obscure Finnish cartoon.



This is funny for many reasons (well it was to us anyway) but it does bring a new character into the blog: older brother of The Tokoroth, Little M.

If he even has ASD, Tokoroth does not have it bad. Of the Triad of Impairments that define autism it's the communication that is really an issue. So when he recently woke crying at 5am it was obvious something was wrong but he was unable to articulate what the problem was. He was inconsolable and shouting something about 'fogs'.

Just as frustration (on both sides) was reaching fever pitch, Little M rolled over in his sleep and mumbled (quite theatrically):

"He just wants the Speckled Frog song!"

Little M has a remarkable ability to interpret his little brothers wants and needs, even in his sleep it would appear.

Of course no sooner was it on and we were safely retired to bed than it was ended and he was throwing a tantrum again. Second time around he was shown how to hit the skip-back button which meant no more tantrums but another ninety minutes of

"Three little speckled frogs
Sitting on a speckled log
Eating the most delicious lunch
yumm yummy"

This is only funny in the retelling, trust me on this!

Sunday

Things aren't great at the moment but sometimes you have to stand on your own two feet and something I have learned is that it can always, ALWAYS, be worse so you make the most of the good stuff.

Here is an example of the good stuff. Sunday afternoon, Sunday papers and The Tokoroth crashed out on the bed with me back at The Box.

The rest of the world does not exist.

Line 'em up

I have had the pleasure of spending a few hours this week with my little Tokoroth, I adore him! I am biased, of course, because he is my flesh and blood. There are days when he reacts positively normally and there are days when he really, really doesn't!



Currently he spends a lot of his waking moments finding containers of liquids either in the bathroom, or the kitchen, and lining them up. It doesn't matter how many times you pick them up and put them back he just keeps getting them back out and lining them up again. And again.

I'm not really much help, I just help him get them really straight and make sure they are organised into types as well as straight lines.

I can't imagine where he gets it from.

Reaction

When it was first proposed that the Tokoroth might have an autistic spectrum disorer I was asked whether I felt disappointed.

"Yes," I said, "I was hoping for Tourettes." :D

The Genetic Link

This post should be subtitled: "He caught it from me?"


I was reviewing the video (DVD) that accompanies the OU course when I was struck by the story of a young boy who is identified as being on the spectrum. At the same time the doctors observed that his grandfather was a bit 'odd' and he (the grandfather) was subsequently diagnosed with Aspergers at age 55.

As I listened to the grandfather speak about his childhood, his social seclusion and the film highlighted the frequent genetic (hereditary) link with autism I was already on the phone to my Mum.

"Mum, you remember how the doctors couldn't explain my rocking when I was a child and how you could take me anywhere when I was a toddler because I just played under a table quietly with a single toy for hours? And you remember how I grew up a bit of a loner who couldn't leave the house without following a very specific pattern? And you remember how I'd pretty much read every Enid Blyton book from every library in our town by the age of 10?"

Yes, it would appear that I may also be undergoing some tests alongside The Tokoroth. I'm pretty sure I'm normal but not everyone else agrees! :D

Audiology & Speech Therapy

On Monday The Tokoroth had an appointment with the Audiology and speech therapy unit. I wasn't at this so I am waiting for his Mum to join in here or send me a report.

SK124

Quite by chance I recently embarked upon an Open University (OU) science degree. The second module, which I am just starting is SK124: Understanding Autism Spectrum Disorders.


I will use this website as place where I write about what I learn as an aid to study but also as a way to understand him and the process of diagnosis.

Diagnosing...

Like a lot of parents we first noticed that the Tokoroth was a bit different a little after he was two. The usual things that concern parents: lack of eye contact, strange vocabulary and just generally not developing at the standard pace.

We're pretty chilled about these things and thought he might be a slow developer or just the last of the bunch (he's the youngest of three). Tokoroth's mum certainly thought so I but I wasn't so sure.

At first I thought he was autistic but he didn't really tick any of the boxes and it wasn't until much later that I encountered the term 'Autism Spectrum Disorders (ASD)'.

That was, for me, when the penny dropped and the journey began.