Montessori

Ach. Quiet for weeks, then I can't stop. I have to get something off my chest though, something good, which I hadn't really realised was happening.

Tokoroth is at a Montessori nursery. It's not unusual for parents with autistic children to take this route to pre-school because of the way the sessions are structured

"...its method of education is characterised by emphasising self-directed activity on the part of the child, and clinical observation on the part of the teacher to stress the importance of adapting the child’s learning environment to his or her development level"

They flagged with us that he wasn't integrating well with his peers (he tolerates other children but just ignores them most of the time as he doesn't realise they *want* to speak or play with him) and once they realised we already suspected ASD and were following a path towards diagnosis they organised an in-nursery assessment by a specialist.

Based on the report and recommendations made by the specialist the Montessori have now, incredibly, involved his classmates in talking to him, involving him in their play, after the teachers briefed his classmates and have made including Tokoroth, in conversation and play, a big game for all of them.

The nursery weren't asked, or expected, to get involved in this process and no help over and above the style and format of their methodology was anticipated but, wow, just wow.

Lovely comment

I've received some really nice comments from people, from friends and from people who are on a similar journey with their children. As I said before I feel that we're kind of lucky in many respects, he is such a strong and amazing character we are truly blessed (you can probably tell from my tone that he's tucked up in bed asleep) but I really value some of the insights that have been shared by others. This is a comment that was left on the blog a few posts back which I think is worth sharing.

"One thing I can observe is that we never know how things are going to go. Things are not linear. Looking at where our guy was at four, we could not have predicted were our guy would be at 14. We could not even have predicted roughly what things he would be best at. Here is a guy who was not speaking in anything near full sentences until age eight and at age 14 his French teacher tells me he is one of two or three kids in the class who really "get it" and there is nothing he likes better than talking with a bunch of his friends on Skype.

Mind you, what we might consider fairly simple questions like "Have you done your homework?" can be very difficult. Go figure. There is no point trying to predict other than to predict that, like everyone, with love and encouragement, our kids will grow.

I like your blog. The approach you are taking, seems to be the one that takes the people I've seen on this journey the furthest."

If only *I* knew what approach I was taking. Something akin to Dory in Finding Nemo:



"Just keep swimming, just keep swimming, just keep swimming, swimming swimming!"

From Grandma

Little Tokoroth loves, LOVES, his grandmas and grandads. My Mum was looking after him yesterday and put him and Little M to bed. This update is from my Mum:

"Last night he got into bed and called me and patted the bed so I got in with him. Little chap gave me eye contact and a big grin as I lay with him and pulled up the covers.

'Sing Grandma' said he, so in my usual off key way started off, little one joined in and when he didn't know words sang "la la la". I suggested he sang to me and he did so after a bit of thought and gave me eye contact the whole time, then proceeded to tell me a story.



I suggested to him that this might be Grandma's bedtime story and he thought this was very funny, jumped up, fell on top of me and had a giggling fit poking me to ake up' which we both thought was very funny.

Lovely half an hour and then he stayed put till I had bathed Little M and he just gazed at the ceiling peeping out from under covers when I popped in to check him, greeting us with a very bright 'Hello Grandma, Hello M.'

Beautiful child love him to bits. xx"

I actually credit my Mum and Dad, who look after him a lot, with helping him to emerge from his secret world and he is at his most outgoing and most fluent when he is with them. It would appear that you never reach a point in your life when you stop learning from your parents.

There's never been a better time

I'm immersed in a world of blogs written by amazing people with amazing stories and who are overcoming way greater odds than I am faced with. I was reminded, again, of how lucky I am by spending a couple of hours with Tokoroth this morning where he was trying his best to communicate, flashing a smile at me and holding that eye contact for just a bit longer than the usual fleeting second.

I'm not blind to the challenges we all face nor am I regressing back into the recent phase of denial but reading blogs by people who walk the same road (I'm looking at you Whitterer) make me feel like my son (and his family) are part of a new community. That there are other people out there who share the same offbeat humour and write blogs about their own, or their children's, struggle with autism, that make me giggle like a girl make it all just so much more manageable.

Having shared this diary with some friends on Facebook I have been overwhelmed with the messages sharing stories of friends who have children diagnosed with autism/AS/ASD and also from people facing challenges with their children who have not realised there is an explanation for their children's behaviour.

My friend of many years is a special needs teacher. He teaches science to secondary school children with a variety of developmental disorders. I loved his comment to me today as we talked about how much more is known about the aetiology of autism and ways to manage it:

"You're lucky, really, there's never been a better time to be autistic." =)

The baby that keeps on giving

"It's like having a child that's forever 15 months old" - Tokoroth's Mum, yesterday.

The denial I have been experiencing recently stems, in part I think, from the fact that my son is perfectly developing in terms of vocabulary and many other developmental milestones for an under two. The problem is that he is three and half.

People who meet Tokoroth, or observe him playing, think he's lovely. He doesn't exhibit any of the repetitive behaviours (hand flapping, spinning, etc) that tend to make people shy away and he just seems quietly attentive to his drawing or playing, a little shy and reluctant to talk. "Cute", "adorable" and "lovely" are the words people use to describe him (parents, teachers and brothers are perhaps a little more reserved!).

Two things spring immediately to mind. If he spends the next twenty years of his life just a couple of years behind then with good schooling I don't see too much of a problem, perhaps academically, perhaps a little socially, but manageable.

The biggest fear I have currently was vocalised perfectly by his mum yesterday and that it is he will forever be a child trapped in an adult's body (not that any of us completely escape that as Shiny Biscuit points out on her blog).

Sat in a restaurant yesterday our quiet, reserved son didn't attract much attention on account of him doing a passable impression of a very well behaved two year old. Roll on ten or twenty years and behaviour that is endearing today could be perceived as socially awkward.

I'm really not going to have any answers anytime soon even if he receives a diagnosis in the next six months it will be years before we really know if he will be capable of living life as an independent adult.



A harsh reminder at the end of the day of the gap between the Little M and the Tokoroth. Little M spotted this picture taken in the summer of 2007 at a party celebrating Little M's 3rd birthday. Tokoroth is less than eighteen months old in this picture and it's memorably prior to noticeable regression (the point in time when many autistic children appear to stop progressing or actually regress developmentally).

When Little M saw the picture he recalled how (more than two years ago) he saw his friends here, what their names were and what he did and what certain outcomes were from that day.

Tokoroth had a party for his third birthday. I am of the opinion that although he enjoyed the day he has no recollection of the event or that even if he does that I will ever hear him recall it in any way shape or form. I remember how Little M raved about his day out on the way home and how he told his friends about it the next day at nursery.

Tokoroth is six months older now than Little M was then. He doesn't have friends at nursery and we've never had a proper conversation about anything. All of a sudden it's all a bit overwhelming.

On the bright side little Tokoroth is an absolutely awesome, lovely, healthy, playful child who has been an absolute joy to be with this weekend and, despite being different, he fills me with love and pride. In the grand scheme of things, really, we're all quite lucky and much better off than some. His biggest handicap is having me for a Dad! =)