Diary of The Tokoroth

I am developing an aversion to children...

2011-05-25T09:17:00.005+01:00

Not my own you understand, but I've just had a tricky situation in the playground at school.

I'm very fortunate in that I can take my children to school most days. I know there are lots of mums who have to work so miss out on the "school run". Today I was stood chatting to a couple of the other mums, you know how it is: one eye on the conversation, one eye on the clock, one eye on my 6 year old, one eye on Tok. I was enjoying the opportunity of observing Tok in "his natural environment", he was stood with a group of children who ranged in age upto around 6. They seemed to be laughing and joking and generally enjoying themselves. But my Mummy radar was tingling (I should mention that I have special powers when it comes to sniffing out trouble) and decided a little wander to get closer to the group was in order.

I was more than a little annoyed when I heard one of the boys stage-whisper "Say the "s" word" just as another little boy ran past and said "Say pooh bum". *gutted* My little Tok thought this was a wonderful game, he loves people giving him attention and was obviously delighted to have so many children milling around him.

Suffice to say I VERY firmly told each boy "You DO NOT teach the little ones to say rude words" and stalked away. I then approached one of the Mum's to let her know what I had said to her son, and why. Sad to say that I waited with baited breath to see if she would be okay with me dealing with the situation in the way I had (I'm happy for my children to be told off in an appropriate way if they are being naughty but not everyone is) and was relieved when she said it wasn't a problem and that she'd have a word with him after school.

I'm calm.

I realise that early years of school come with their share of "rude" words being heard (as a Mum of 3 I'm hardly a novice). But what's heartbreaking about this situation is the very fine line that is being trod between "children playing with Tok" and "children showing malintent towards Tok".

How do I explain subtle difference between "larking around with friends" and "inappropriate play"? I think I would struggle to explain this to an average 5 year old let alone our little chap....

-- Mum of Tok

Problems with water? What? Me? I think not!

2011-04-15T13:17:00.005+01:00

The beauty of parenting any child (with or without ASD) is their unwavering ability to prove you wrong. Do they get taken aside at school and given "How to make Mummy/Daddy look like they don't know anything" classes?

We've gone from a screeching child in the pool on Monday, to a little boy merrily splashing around up to his neck - fetching pool toys, laughing, smiling and generally having high jinks - on Friday.

What a difference a week (and some one on one attention) makes.

Not only have we just come back from a truly fun swimming session, he also spent about an hour in the showers afterward (see previous post to understand the full gravity of that statement).

*gobsmacked and delighted*

-- Mum of Tok

Just keep swimming, just keep swimming, just keep swimming

2011-04-14T09:19:00.005+01:00

Tok has always had issues with spaces that have poor acoustics - swimming pools, photographer studios, bathrooms and the like - he used to be absolutely TERRIFIED of bath time, it was always an epic battle that involved lots of tears (his and mine).

Over the last couple of years we have persevered and he is now able to cope with bath time (as long as we don't wash his hair) and he'll stay in the bathroom when the shower is turned on (but won't go anywhere near it).

Towards the end of last year we went on holiday and I made it my mission to get Tok into the paddling pool.

Everyday we all traipsed down to the pool, the siblings would merrily launch themselves into the deep end, throw themselves down the slide and generally enjoy themselves.

Tok would stare, tremble a little and keep asking to "go home". Bit by bit (sounds like my SALT training) we got closer and closer to the pool. Lots of comfort, lots of reassurance, sitting on the edge, dipping our toes in, getting used to the "pool" concept. On the last day of our holiday, SUCCESS! We went into the paddling pool, he was somewhat nervous at first but within minutes merrily splashing around and going down the toddler water slide - talk about from zero to hero! That's Tok all over though, it might take him a while but when he "get's it" he is off!

That was last year, this Easter break one of his siblings is having swimming lessons everyday. It's been a few months since that one and only time he's been in a pool and you could have blown me away when, whilst watching us get ready for the lesson, he announced "I want to go splish splash whoosh swimming".

Suffice to say, he only lasted 45 seconds with the instructor and I had to take him out as he was disrupting the class somewhat, but the next day he went back and lasted around 3 minutes - he walked the entire width of the junior pool (the instructor got him to run to mummy *cunning*). Yesterday I went in the pool with him and for half an hour we had a fabulous time throwing toys around, and I slowly tempted him deeper and deeper (bit by bit again) into the pool and made it all the way to his belly button. Can't wait to see what we will achieve today!

It's challenging at times, but there is no greater prize than your efforts being rewarded with your child adding to their repertoire of abilities, language, knowledge and social skills.

-- Mum of Tok

Back away from the professionals Mum...

2011-03-07T09:27:00.002Z

Mum has been running herself ragged the past few weeks, getting really rather irate about the fact that no-one seems to be setting any targets or working towards my IEP (Individual Education Plan).

She's got a busy week with me this week, we are off to a special hearing clinic - we tried the traditional methods of testing my hearing but I can hardly be expected to understand the "Raise your hand when you hear the beep" instructions. Not just because of my autism but also because I am only 4! So we have a fun few hours locked in a room with a very nice lady who specialises in working with kids like me.

We also have a follow up appointment at a CDAC (Communication Disorder Assessment Clinic), hence the reason Mum has been hassling the education and health professionals even more than she normally does!

Imagine her embarrassment when she got a call from my school, essentially asking her to "Chillax", there was never any intention of me having an IEP or any targets in place until after Easter. These first few weeks are all about getting me settled before the real work begins.

I think Mum would have appreciated someone letting her know before now....

-- Tok (via Mum of Tok)

Give me a reason

2011-01-16T19:17:00.003Z

We are now in week 2 of a 10 week Hanen Centre programme (more details here) which provides parents of children with Autism Spectrum Disorder (ASD) and related social communication difficulties, practical tools to help their children communicate.

I have to say it has been VERY informative but of all the things we have discussed so far, the piece of information I have passed on to everyone that deals with our boy is "give him a reason to talk". Put obstacles in his way to encourage him to speak in order to get what he wants.

So: Don't give him a drink just because you 'know' he is thirsty. Stop leaving the computer turned on so he can access it whenever he wants. Put his favorite book on the top shelf. Move the yogurts to the top shelf of the fridge.

Leverage is the key to communication, make him ASK.

Obvious when you think about it, but often the very greatest ideas are the simple ones...

-- Mum of Tok

School Daze

2011-01-11T11:27:00.009Z

[I am delighted to introduce a new writer to the blog - Tok's Mum! -Ed]

So, after weeks of preparation, the "big day" finally arrived. Our littlest chap started his first day at school. All the checks had been done:

His new school had received the all important handover file from Nursery before Christmas, this included his Individual Education Plan, progress to date, an "all about me" summary sheet - everything you could possibly want to know about him.
We'd been looking at pictures of the new school and using these to ensure he understood he wouldn't be going to nursery anymore.
We'd been practicing saying "Good Morning Mrs (new teachers name)"
His uniform had been purchased and clearly named.
Everyone had been speaking positively about his move to "big school".

What could possibly go wrong?

Ummm, how about the fact that his new teacher was actually one of two (a job share) and that neither of them had received his file. I kid you not.

Luckily for our little chap, if there is one good thing that has come out of the last few months it's the fact that Mummy has learnt to take NOTHING for granted. A very dear friend advised us to "be a nuisance" as it was one of the only ways to get things done and this has become kind of ingrained in any dealings with the authorities.

His first day consisted of two hours in the afternoon so I "popped" into the office in the morning to ask if I could have a chat with the classroom teacher or the head teacher, just a quick catch up before his first session.... Which is when I found out that his file hadn't been passed over - it was still in the envelope I had hand delivered it in.

You can imagine how mightily unimpressed I was with this news.

When presented challenges you have to face them head on and figure out how best to deal with the situation. So, I took the file up to his new classroom and sat down for half an hour with his (Monday to Wednesday) teacher. In fairness, she asked some good questions and as time was short I encouraged her to read the "all about me" overview as this would be the best tool for her to use in the early days of her time with him.

I asked her to set up a home-school diary, she readily agreed to do this stating that it wouldn't be written in everyday, just if there was an incident to report... I'm happy to say that once I clarified that due to his main issue being one of COMMUNICATION I was looking for them to log things which I could then use as tools to facilitate communication at home and encourage him to recount his day i.e. a book they have read, an activity they did, a song they sang etc.

So, whilst not at all happy with the situation, I was at least confident that our boy would walk into an understanding environment.

As it happens, this wasn't the case, but luckily for them a fabulous little girl from his nursery (who has been somewhat motherly towards him since they first met) also joined and she very firmly took him by the hand and forcefully led him into their first session. I will be forever grateful to her.

My next course of action was thus:

booked an appointment with the School SENCO
called the SALT to explain the situation and ask her to be mindful of the fact there are two teachers involved in his case
called the area special needs teacher requesting she get into the school PDQ
booked an appointment to see the Thursday-Friday teacher

I'm pleased to report that since initially flagging the rather obvious issue that no-one was ready to receive this wonderful - albeit a little ''challenged' - child into the class, the school seem to have raised their game. He and his classmates have had a few short sessions with their first "full" day coming up soon. I have to say he seems to be happy, so far, so good...

But I'll still be keeping my appointments at the school, and will most likely be making a lot more inquiries than I would had this situation not arisen, the school has a duty of care to every child it teaches and I will be giving them a LOT of support and encouragement when it comes to mine.

One of my friends said "He's lucky to have you fighting his corner", I don't look at it as a fight, I think it's more like a journey. He's a tourist and I'm the tour guide responsible for showing him the sights, sounds and customs of this foreign culture he's found himself living in.

--Mum of Tok

Horses for Courses

2010-11-14T17:10:00.000Z

I think I need to write more frequent, smaller posts. So much of the cool stuff that's happened hasn't got told because I always ending up writing an essay.

Today we took Little M for a horse riding lesson, his first for ages and asked Tokoroth if he wanted to watch his brother on a horse. He was super keen (for someone who rarely expresses a keen interest in anything other than food or going to Grandma's) and we've often been told about the connection that ASD kids make with horses.

From the moment we got there and Little M had saddled up the Tokoroth was squealing "Iwantogoonahorse Iwantogoonahorse Iwantogoonahorse Iwantogoonahorse" on permanent loop. He was so distressed he wasn't actually on a horse I couldn't let him watch his brother. The staff were pretty cool and told us that a few autistic kids ride at the school and that they get them involved with grooming, etc.

While Little M finished up his lesson, Tokoroth and I hung out in the stables meeting the horses and a smile lit up his face. The great big smile we rarely get to see. He loved the horses. Sadly this meant that when we left without him still having been on a horse and this led to a fairly predictable mini-meltdown.

Technically a success though as the hunch about him bonding with horses paid off. Talking of paid...as thrilled as I am to see that smile I have no idea how we're going to afford lessons for both of them!

(AS)D for Diagnosis!

2010-09-01T23:40:00.000+01:00

The CDAC was today - the end of the line or the start of the journey depending on how you perceive it. The CDAC/CDC = Communication Disorder (Assessment) Clinic is the last of a year long series of tests, observations and interviews at home, at the hospital and at his Montessori nursery.

Tokoroth's case was passed up to the consultant paediatrician, after the earlier assessment by Dr N who thought that a more senior colleague should make the final diagnosis (because it was felt that Tokoroth was only-just or not-at-all meeting the criteria for an ASD).

I stopped blogging about all of the stages we have been going through because, as I have explained, I had grown more fearful of the Fragile X diagnosis and just stuck my head in the sand a bit and left it to Tok's mum to coordinate the battery of recent tests and interviews.

The Waiting
This morning though as we sat waiting for the team to call us in I made a list of his current strengths/deficits against the core triad of impairments. Some days he is more autistic than others, something I refer to jokingly as the 'autistic pendulum'. Although he has made a lot of progress with his IEP (Individual Education Plan) crafted by the SALT and local SENCO and implemented by the nursery with support from us I still felt he was ticking a lot of boxes. Enough, in my layperson's opinion, to warrant a diagnosis but with that diagnosis being applied according to the ICD the best I could envisage was PDD-unspecified which isn't quite as encompassing (or useful as it happens) as the (U.S.) DSM-IV-TR equivalent of PDD-Not Otherwise Specified.

Again, it's not the label that's important, it's the help and services a diagnosis unlocks as well as paving the way for a choice between mainstream school or an 'MLD' school (for children with moderate learning disorders).

I listed the characteristics he still exhibited under the social/communication/repetitive behaviour headings and wondered if I'd get a chance to present them to the consultant.

Waiting for the CDC to begin...

The Interview
The morning started with Tokoroth going off with a SALT and his special needs health visitor who, without parents present, ran him through a series of tests (possibly DISCO, I forgot to ask) and the consultant interviewed Tok's Mum and I (possibly the ADI, again I forgot to ask and was also trying not to 'flag' myself).

The interview went well and the consultant pre-empted a lot of of my concerns by evidently drawing the same conclusions from the years reports and assessments. I hardly needed to have worried that she would miss any of this stuff. She made the point about the diagnosis being made according to ICD criteria and again I kept quiet. The interview progressed and I made some gentle points about his imperative/declarative pointing and his echolalia and just like the previous paediatrician she actually welcomed these comments so I just went ahead and talked through my list and unburdened myself about the Fragile X fears. This is where everything started going really well.

The Chat
The consultant said that she felt he warranted an autism diagnosis but still had to go through the processes with her colleagues. She said that she would immediately organise a series of blood tests to rule out Fragile X, any form of thyroid problem as well as a creatine kinase test to rule out any form of muscular dystrophy. The last two tests are simply because he is small for his age but mostly just to give me something else to worry about, I'm sure.

The Waiting Revisited
Eventually we were sent out while the consultant and the rest of the team deliberated, cogitated and digested the morning's sessions. A little over an hour and some anxious coffees later we were called back in.

The Diagnosis
The jury had considered and was about to deliver its verdict. And there it was, written on a piece of paper. Right there, in black and white (and slightly pale yellow due to crappy phone camera).

The Diagnosis

I could hardly believe it. Straight up plain and simple ASD. Just as I called it a year ago before I knew my ASD from my elbow. This piece of paper was in a blue folder which, as Tok's mum put it so perfectly 'unlocks the keys to the city'.

"Wow," I said to the consultant, "he's one A short of an ASDA!" (for the Americans that's the Walmart equivalent of 'four quarters short of a dollar' and I apologise for my awful sense of humour!).

The Help
With immediate effect Tok is under the supervision of the Early Years team who mentor him through pre-school up to age 5. In addition we have regular scheduled speech and language therapy (rather than observation) and access to sign language classes, picture exchange systems and a whole set of interventions I have been coveting for the last year.

Finally, finally, some big, BIG help.

But there was still one more question to be asked: "WHAT'S IN IT FOR ME?!" and as it turns out there are some little extras like a little card that gets you priority access to toilets, let's you jump the queue at theme parks, all the, you know, REALLY useful stuff!

The Parking Permit
Top of that list of 'stuff' for me though is the revelation that we might be entitled to a blue disabled parking permit. I can't tell you how amazing these things are for parking in central London! So for another month I still have the blood tests to worry about, Fragile X could still be the cause of his ASD and a co-morbid condition. Also the bloods could reveal issues relating to his growth and development. But, in the following few weeks while I worry about that, I am under strict instructions to stop hugging him affectionately while referring to him as 'my little blue badge'!

The CDAC! The CDAC! The CDAC is here!

2010-07-14T21:46:00.000+01:00

You might be forgiven for thinking there had been a moratorium on this blog and that I hadn't been writing. You'd be right, kinda. I have been starting posts, just never finishing them. We had an almost successful trip to the cinema, yes the CINEMA, where I actually got him inside (with out too much force) and he watched (some of) the film. I wrote a lot about that but just couldn't get to the end.

I wrote a post about the SALT (speech therapist) visits to The Montessori. One about the meeting with the SENCO (special educational needs co-ordinator). I wrote a lot about that but just couldn't get to the end. Same story when the Early Years Action Group got involved and when everything finally came together under MAPS (multi-something something service, I have acronym overload right now and I'm too tired to Google it).

The reason I can't get to the end is because at the end of each post I have to acknowledge something. Something I don't want to acknowledge. I don't think Tokoroth is autistic. The pediatrician didn't think he was autisitic. The whatever-the-hell-the-acronym of the last person to assess him at home last week (I blogged about too, nearly) doesn't think he's autistic. Autistic traits, sure. Buckets of those. But not, they say, we think, Autistic.

You may remember I worried about this before. I know he doesn't have Aspergers. I know he doesn't have full hell-for-leather 'Classic' autism because you don't have to be particularly well read in the subject to make an informal diagnosis for either of those. I was hoping for whatever the ICD equivalent of PDD-NOS is which, to the layperson, is, simply put, an Autism Spectrum Disorder. I'd live with that. No, actually, I'd cheer for that, because it means it isn't the thing I fear. The thing I worry about.

I've just been hiding my head in the sand, refusing to engage and generally being a bit of a twat if I'm being honest. I went out with him on his own the other weekend and we had an amazing time.

Tokoroth out with me eating falafels and houmous in N16

His, and our, quality of life is high, different and challenging, but high. He's my son and I love him and he is also a great footstool and pillow but, as a parent, knowing what is wrong is a very important part of the psychological jig-saw. If it is *that* I will cope. Just for now I'm hiding from it. But not for much longer.

Did I mention, the CDAC is here? This is THE multi-disciplinary assessment where the SALT, the SENCO, MAPS, and any other TLAs that wish to attend, along with the pediatrician and the consultant pediatrician compare notes and perform (more) comprehensive assessments and the eventual outcome of which is THE LABEL. Technically this is referred to as 'The Diagnosis' but it might just as well be called The Label and it might yet be dependent on further tests to rule in (or out) the worrying thing.

The CDAC is here. Well, it's not far away and I'm exceptionally nervous. Did I ever mention that I was a worrier?

The unfairness of Special

2010-04-13T22:26:00.001+01:00

It's not fair! Nothing is fair when you are young. Adults seemingly dictating all the rules, usually while contradicting them with their own behaviour. When a special needs child has siblings there is an extra twist to this.

If Tokoroth's brothers go to the fridge and take out the juice without asking they get told off. If Tokoroth does the same he gets congratulated for making himself a drink.

If Little M asks for something and get's refused and throws a tantrum he gets punished. If Tokoroth gets refused and throws a tantrum he's quite likely to get what he asked for. I'd never give into a tantrum of his brother's but meltdowns from children with specialness are, well, special. They are likely to end with him biting himself or banging his head on the table (and we never have plasters and our kitchen worktops cost a lot of money).

Joking aside, for the sibling of Tokoroth, it's just not fair. What they get told off for, he gets congratulated for, and throwing a tantrum is likely to get them nothing, but him something.

There is however another side to this unfairness. Blame culture. Today I noticed damage, well, ok, very minor damage, to our kitchen cupboards. It was very new and very annoying. We saved for years for those cupboards so I duly lined up the suspects (having eliminated the cat from my enquiries).

Me: Did you do it?
Child 1: Nuh-uh.

Me: Did you do it?

Child 2: Nope.

Me: Did you do it?

Child 3: I want pizza!

(you might be able to guess which one was Tokoroth)

Me: So....WHO did do it?

All eyes turn to the child who can't defend himself. What the siblings have figured out is that Tokoroth can't answer the charge put to him, he can't even look shifty and awkward, he simply doesn't understand the question. Instant get out clause. Tokoroth did it. Every time. And I still don't know who damaged the kitchen cabinet.

It's just not fair!

Interesting comment

2010-04-13T20:19:00.000+01:00

Interesting comment on the Fragile X post.

"An interesting observation that comes of comparing notes with other parents is that most professionals have preferred opinions that they tend to apply to most of the kids that they see. One person gives out PDD-NOS diagnoses, another gives out Asperger's. One person sees anger issues, another sees ADHD. In some ways, the professionals are easier to classify than the kids."

I completely get where this is coming from and I'm curious to se if other people have had this experience too.

Pizza!

2010-04-07T22:23:00.001+01:00

He'll talk if there's food involved!

"Daddy read it..."

2010-04-01T00:53:00.001+01:00

It's hard at the moment to have any clear idea of what I am doing because my head is so firmly buried in the sand. I'm so fixated on the new possibility of Fragile X that I have lost sight of the bigger picture, not appreciated or blogged the incredible work the Montessori has done with his IEP (individual education plan) and just generally ignored or at least not acknowledged how the NHS and LEA plans are finally coming together with a wealth of support and options for him.

I haven't been ignoring Tokoroth though, I've just been ignoring the problem.

Normally I make allowances for the specialness and read one book to him and a different book to Little M. Tokoroth loves his books. This is his favourite:

But I'm always impatient to read the Beast Quest stories to Little M. We are up to book eleven now:

I have, in the last few weeks, plonked them in their bed and just read Beast Quest. As you might expect Tokoroth took very little notice, played distractedly or flicked through his own books. To engage him, well, to keep him quiet so Little M and I could read in peace, I used to show him the pictures and look at him as I read the story and, at times, he almost seemed interested. He was quieter at least. Without speech I have no idea of what he was really thinking.

A week ago a funny thing happened. Tokoroth's mum is a bit more patient than me and had been reading his books to him before I went in with Beast Quest. I heard her ask him what book he wanted and almost fell over when I heard him squeak "Beeast Queest" shortly followed by "Daddy reeead it".

Bloody Hell. And now it's every night. He curls up with his brother, squeaks his request for Beast Quest and lays quietly, attentively and extremely contentedly usually falling asleep after a chapter or so.

I have no idea if he can follow the story or whether he has simply adopted this as a routine but I am loving this new development and dare to dream that he understands the story and is just as hooked as his brother and I.

The power of books and the wonder of reading are a true gift.

Knowing Me, Knowing You.

2010-04-01T00:19:00.001+01:00

It might be a parent thing. It might be a 'me' thing. It was the same with his little brother. When he was a baby I used to worry that something would happen to me and Little M wouldn't 'know' me, that I'd just be a name, a photograph but not a memory.

As he grew he into a lovely, lively, little boy we talked, we played, we got to know one another and we continue to shape each other every day.

I no longer have The Fear with him.

I have it with Tokoroth though. I worry that he will never know me, that we'll never build that relationship, that if something happens to me we will never really have spoken, never really have learned of each other or not in a way that would stem this fear.

Before Little M could speak I kept a diary of my early days with him, documented our moonlight strolls when I took him out in his pram, I added photographs of us, when he was a tiny baby, watching the sun rise over Spitalfield's market on a Sunday morning, so that if anything happened he'd know that we did stuff, he'd know that we'd spent that time together and that could help seed some memories.

Different but Amazing.

As I struggle to apply the same process to Tokoroth I am reminded that when you are a parent or carer for a child with special needs you have to accept that the rules are different and so it's time to quite pandering to The Fear and just enjoy the amazing but different times that we have.

The memories will surely follow.

Little M. Fragile X.

2010-02-08T22:26:00.001Z

Did I ever mention that I was a worrier? My natural disposition is to worry. If there was nothing to worry about, I'd worry.

I have been worrying out loud on this blog for a while. One persistent theme is the 'is he or isn't he?' question in relation to a diagnosis of an autism spectrum disorder for Tokoroth. My worry has always been 'what if he's not?' and that's not because I want him to be autistic but because if his symptoms are not related to ASD then what can I attribute his developmental delay to?

Rewind.

Today was not D for Diagnosis Day. I had to actually get to the Child Development Clinic appointment to find out what we were there for (despite asking several times).

Today was an assessment by a pediatrician who, with the help of an assistant and observed by a student, led Tokoroth through a multitude of tasks to test his abilities against standard measures for motor development, speech, social interaction and general developmental milestones.

Tokoroth was very quiet, very cooperative and very engaged. He smiled, listened, and, mostly, did what he was asked. Mostly!

I couldn't say for sure but I suspect this may have been the Autism Diagnostic Observation Schedule (ADOS). I didn't ask because I was determined to bite my tongue and act like I knew nothing (see previous post) so as not to annoy the clever, real doctor person.

As it happened I shouldn't have worried. The pediatrician was straight out of the school of Simon Baron-Cohen and when my knowledge leaked out (curse you, loose tongue) she was really interested to know what I knew and how I knew it. We chatted about ICD v DSM and I explained he wasn't normally mute and displayed delayed echolalia and she was entirely comfortable with me doing this. She was particularly interested in my self-observation of Broader Autism Phenotype. In fact it seemed helpful. It also meant I could ask the questions that have been burning away inside me that no one else could answer.

Result.

The pediatrician ticked some boxes, wrote some notes and did some adding up. Then she scratched her head. She explained that the next step was what I refer to as D-Day. This would be the full multi-disciplinary assessment with the SALT, pediatrician (possibly the same one) and other specialists. She asked me what I thought would be the outcome. I said I thought PDD-NOS or whatever the ICD equivalent was but that I wasn't sure because sometimes he just didn't seem to fit in that box either.

Hmmmm.

She scratched her head a bit more. She told me that she wasn't sure he'd warrant a diagnosis of a spectrum disorder. Wasn't sure. Maybe. Maybe not. Maybe. Maybe not. She was doing the same Homer Simpson dance I was doing a few posts back. She said that because it was such a fine call that she would suggest that the assessment was carried out, not by her, but by one of the consultant pediatricians with more experience with which to make a call.

Bombshell.

Then she asked the question, that one I was asking at the beginning of this post. What if he's not autistic? What is the cause of his autism-like symptoms? She looked at me and mentioned that it might be an idea to get some blood tests taken and test for chromosome abnormality. She asked me if I knew why she was suggesting that.

Fragile X.

I had discounted this (based on physical observation alone) but still feared it. I fear it maybe because I don't know it (compared to what I know about ASDs) but also because it means that maybe I was not passing on autism genes but that his mum was passing on the Fragile X gene.

The reason that Fragile X being the cause and the impairment being a product of that worries me is because it has wider implications. Little M, bother of Tokoroth, is a little genius. I had figured that he was lucky to escape my pesky genes and would be free of the challenge of living with autistic traits. If Tokoroth has the Fragile X gene and that is the cause of his intellectual disability then it likely that Little M could be a carrier even if he is not symptomatic. Or not symptomatic yet.

Either way we could be faced with having to explain to both of them that they have, might have in the future, or that their children might inherit, a chromosone abnormality that can result in a spectrum of characteristic physical, intellectual, emotional and behavioral deficits.

Maybe.

Of course Tokoroth might just be autistic. Or just lazy. Or something. Did I ever mention that I was a worrier?

Uncomfortable reading

2010-01-29T23:20:00.005Z

This is a screenshot from one of my current degree modules, the SK124 course.

I winced a bit when I read this. I think I have established that I probably squeeze nicely into the middle of the Broader Autism Phenotype category and narrowly avoid coming out the other side of with a diagnosis. Even so, seeing the description above pulled me up a bit because it's just, well, so exactly me. I know I am doing it, I see what I am writing in emails and moderate, edit, delete, try really hard not to be this person but even after the tongue biting this is me to a T.

Imagine the CDC next week:

"So are you doing ADOS or ADI? Did you train at the ARC? Do you believe the CHAT would have led to an earlier intervention? What are you scoring him at? High 30's? Low 40's? I say PDD-NOS, do you agree? Will you advocate PECS or SPELL?"

Oh dear! Must. Bite. Tongue. Hard.

Autistic much?

2010-01-28T22:56:00.063Z

It's only a few weeks now until the Child Development Clinic and, possibly, a formal diagnosis. The label doesn't mean anything though. It's like going to the Doctors with a cough and the doctor says: "you have a cough".

But what the doctor does then is confirms that there isn't something nasty causing the cough, that maybe you can't see, and then he or she gives you a prescription. The diagnosis will likely confirm what we think and hopefully we will be 'prescribed' a statement of special needs which then means we get more options for interventions, a tailored IEP and other, er, stuff. We'll see. I'm still pretty relaxed right now.

The following letter is written by the SEN (special needs coordinator) called in by his nursery. Her assessment will feed into the whole multi-disciplinary CDC thing. I know I should probably be sad or something reading this, but I must be going straight to hell because I laughed! The thing is, I know him, I know I'm blessed to have him and, just like with an Apple iPad the smart thing to do is focus not on what it doesn't do but what it does do and does very well. We won't mind if you laugh too...

(you can click on the images below to biggerate them)

Yeah, I think that counts as 'on the spectrum'. He can eat, go to the toilet and enjoy books. What more do you need to enjoy life?

The Battles of the Autistic Thinker

2010-01-20T08:48:00.000Z

❝What really seems to throw people is that they can’t seem to understand that a six-year-old boy who knows all the planets in the solar system and who can already subtract five from three may not yet have worked out that it is inappropriate to climb in the dust-bins during play time❞

(Marc Segar, The Battles of the Autistic Thinker)

Ok, kids, it's beanbag time.

2010-01-19T00:16:00.000Z

I might have mentioned how completely awesome Tokoroth's nursery have been given that they are a private nursery (albeit a Montessori).

In addition to the assessments taking place within the NHS framework, coordinated by Tokoroth's health visitor, it appears we have a second stream of activity taking place being run by the local SEN co-ordinator.

Visiting this week the SEN lady kindly dropped off a questionnaire for the nursery to complete, all FIFTY FOUR pages of it. A number of questions are posed in this document such as:

Can roll plasticine into a sausage?
Stands on tip-toe when playing?
Able to throw a bean-bag into a bucket?

The nursery are required to answer 'Never', 'Sometimes' or 'Always' and add comments on 54 pages at approx. 16 questions per page. So how do you answer questions like the above if you've never seen him roll a sausage or throw a bean bag?

Do you a) leave those questions blank b) guess based on similar activities or c) something else?

The nursery chose the third option. How did they go about answering the questions? They enagaged Tokoroth's whole class in a series of activities to answer the questions. If they didn't know the answer to the question, they found out!

Can roll plasticine into a sausage? "Ok, kids, we are all going to make sausages!"

While 20 kids got playful with the play-doh Tokoroth was carefully observed and the question answered.

Able to throw a bean-bag into a bucket? "Ok, kids grab a bucket and a bean bag...."

Stands on tip-toe while playing? "Ok, kids, it's Stretch and Grow time..."

If there was a question they couldn't answer they invented a classroom activity so they could observe Tokoroth and record an answer.

A-mazing.

When tantrums go bad

2010-01-08T21:29:00.011Z

We've all done it. Regardless of whether you have children or not, we've definitely all done it. We've observed the older-than-a-toddler-child having a tantrum, screaming, blue in the face, writhing on the floor (or the pavement) or running around the supermarket like a human firework and we've watched the parent, usually the mother, pinched and drawn, try to console (or physically restrain) their offspring them and we've passed judgement.

"The child is spoiled!"
"Bad parenting"
"I wouldn't accept that behaviour."
"When I was a child my Mum would have silenced me with one, quiet, word."

I've definitely thought all those things. I've always held true to the quote of "judge not lest you be judged" but I've definitely thought those things and I have been, well, judgmental.

Googled for "tantrum" - Waaaaah!

Children around the age of two have tantrums, you kind of know this instinctively even as a non-parent. The phrase "terrible-twos" seems to be embedded into our psyche so even non-parents can, on occasion, nod with faux-knowledge and mutter "ah, the terrible twos...". I guess before you are a parent you just think to yourself that, if I ever have children (and you always think you won't), then I'll just avoid the supermarket for a year (God bless Ocado!) and never allow myself the humiliation.

Not taking your children out in public is tricky but supermarkets can be avoided and 24 hour shopping means you can take them while they are half asleep and the Tutters are fewer. However, none of the how-to-be-a-cleverer-parent guides on the terrible-twos give you a warning that you might end up with a child that looks four or five or even fifteen on the outside but has the bubbling incandescence of the most terriblest toddler-terriblis (I am aware that phrase is more illiteration than alliteration, thanks).

All children will have tantrums at one point or another in their lives. Inevitably, some of these tantrums will occur in public. Children with autism can have tantrums at a much older age than those children who are typically-developing. Unfortunately, a public tantrum by an older child can draw much criticism (tutting, eye-rolling!) from those in the area; this makes for a very uncomfortable situation. I can assure you of this.

So, no-one explains that an everyday supermarket-toddler-tantrum is light relief compared to the episodic meltdown that is characterised by cognitively atypical children with ADD/ASD style behavioural traits. A rigid, screaming, apoplectic child who is inconsolable i.e. cannot be silenced or bribed. Oh, and did I mention, these can happen several times a day!

All of this pre-ramble is a way of introducing a recent entry, Growing, on Mama Be Good, where the author, Brenda, sums up my oh-so-very-different-now opinion but in quite beautiful prose. I particularly like her post because it starts and ends with a quote from Dr Seuss' "The Grinch".

"I learned to suspend judgment - of children, of parents, of behavior. I learned that acceptance comes in its own time. I learned to give up a vision of my child's life. I learned that the vision wasn't a terribly good one after all. I learned to lighten up. I learned that toots are pretty funny.

I learned a whole lexicon. Before Jack was born, I thought "developmentally delayed" was just a polite way to say "intellectually impaired." I, like many others, thought autism meant Rainman. I didn't know anyone who had a special needs child. I thought babies that had to wear glasses were just the saddest thing. Talk about Grinchful ignorance."

So, yeah, apologies for the pre-amble ramble, go and read Brenda's post and when you see me walking out of the Brent Cross shopping centre trying to calmy talk down an episodic Tokoroth (who has a lovely habit of calling out "Help! Help! when I am dealing with him) please try not judge me, just, you know, point and laugh.

Measuring the AQ

2009-12-29T02:10:00.008Z

Disclaimer: dear casual reader, this post is a bit technical, mostly posts here are funner :)

Disclaimer 2: these are self-administered and self-scored tests. They are not intended as a diagnosis but as a screen and I have completed them for interest as Tokoroth is already in the middle of the series of diagnostic assessments. The fact that I score in the BAP range is entirely consistent with current theory.

I spent a lot of today calculating Tokoroth's Autism Spectrum Quotient (AQ). The problem is that he's too old for the Q-CHAT (Quantative Checklist for Autism in Toddlers) which is ideally applied pre-24 months and too young for the AQ for Children.

All of the tests are available to download from Simon Baron-Cohen's website: http://www.autismresearchcentre.com/ which is a website I wish I had found a lot sooner. I discovered it because I am reading his latest book which I suspect my current SK124 OU course is based on.

I decided to run with the Q-CHAT but retrospectively answer his questions as he was at 2 with some annotation of where there has been change.

http://dl.dropbox.com/u/41893/Completed-Q-CHAT.pdf (score: 62/100)
(the red ticks are the answers for his brother, Little M, which I used as a control set of answers from a typically developing child)

I then ran the standard AQ-Child for children 4+ years

http://dl.dropbox.com/u/41893/Completed-AQ%20-Child.pdf (score: 105/150)

and finally, as advised I ran the AQ-Adult against myself:

http://dl.dropbox.com/u/41893/Completed-AQ-Adult.pdf (score: 27-31/50)

The reason I have 27-31 is that I kept re-interpeting the questions and that's the range I fell between. Interestingly it turned out I wasn't the only one self testing and a conversation on Twitter (with @melph) led me to an online resource for the same test on wired.com.

In the first major trial using the (adult) test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. So, now I have tests and scores. What I don't have, yet, is a clear understanding of how to interpret the scores for the Q-CHAT and the AQ-Child.

I think it's fair to say that Tokoroth scores pretty high and I am nudging but not on the disorder side of the spectrum. I was a little higher than I expected but the test means very little on it's own. What was quite funny was that after running the tests I took a break to build some Lego with Little M. I found this very relaxing. When I returned to the ARC website I found a link on Lego therapy!

[This post is a work in progress]

edit: Interesting, according to the book, between 27 and 32 is a classic range for BAP.

Echolalia 2 - Paint!

2009-12-29T01:46:00.003Z

(click on the title to play the audio)

There must be an easier way to embed audio, I'll work on that. Again, the context here is bedtime, sat up watching a little bit of Tom and Jerry ahead of wind down and reading time. I try to engage with Tokoroth using his wallchart to try and encourage him to count and verbalise. I have some success but it goes predictably wrong along the way. Some of his responses to his questions make me smile a lot.

The good news here is that echolalia like this is a sign of him trying to speak, he just doesn't quite know how to form the words he needs. It's very similar to the babble you hear from a toddler when they process words they have heard in the cots/beds in the early hours.

The speech delay website I found earlier makes it clear that this condition can exist outside of autism and given that his repetitive behaviour is quite low this will be an avenue that gets explored, indeed it is the SALT (speech and language therapist) that will perform his next assessment in the nursery,

Echolalia - Story time (audio)

2009-12-28T22:58:00.006Z

(click on the title to listen to the recording)
(context: bedtime, sat up in bed 'babbling' as I got him ready for bed)

I think I have given up on the 'big' post on Echolalia and have decided to break it into smaller posts. The purpose of this to record snippets of Tokoroth's speech, his receptive and generative speech specifically and to capture his echolalia, if that's even what this is. Remember I am making observations based on what I have read from sources that I trust. I am a lay person therefore it is entirely likely I don't have a clue what I am talking about. Caveat over, let's begin.

What is echolalia?

The flippant answer would be: "what is echolalia?" because it is, simply stated, the repeating of speech as opposed to the generation of speech. Immediate echolalia is literally repeating back the question as a form of answer, Delayed echolalia is the repeating back of phrases (heard on the TV or from people) randomly and out of context days, weeks or months later.

There is a quite detailed explanation of the disorder on a US 'special ed' website which points out this sort of babble is quite normal in toddlers:

"Echolalia occurs in normal language development yet decreases as the typically developing child gains more spontaneous generative language. In children with autism, echolalia occurs with greater frequency and lasts for a longer period of time as the child with autism typically experiences significant difficulty developing spontaneous, generative language skills."

Also on that website is an example which actually applies 100% to Tokoroth:

A child with autism is very anxious about where he will be going after school as the destination changes frequently. He says repetitively throughout the day, "Go to grandmas?"

He says that. Exactly that and, probably, for exactly that reason. Right, short and sweet, example one of his echolalia and an explanation of what it is. I intend to collect more examples to feed into his, eventual, multidisciplinary assessment.

Mind The Gap

2009-12-20T22:54:00.008Z

The community nurse approved (or at least went along with) our decision to keep Tokoroth in the Montessori and also seemed impressed by the approach they had taken towards inclusivity. This is apparently quite exceptional for a private nursery that doesn't get any allowance for special needs children.

I have asked the nursery to obtain a written copy of the assessment so it can be included in the overall diagnosis by the pediatrician when we eventually proceed to the Child Development Clinic assessment stage. We have now re-booked his 'official' in-nursery assessment to take place at the Montessori.

Given current modern thinking on intervention this means we should have a statement of special educational needs well before he actually starts Reception. We're pretty lucky here that we had an inkling of Tokoroth being on the spectrum and going straight to the health centre where we struck gold with the community nurse who assessed him. Speaking last night to the mother of a child recently diagnosed with Asperger's (or HFA depending on the day of the week and pediatrician they see) they made the classic mistake of seeing their GP first.

In fact, come to think of it, we also got derailed by our GP. We presented Tokoroth, aged 2, with what we perceived , correctly it turned out, as hypersensitivity. This was when I was still not fully convinced of a bigger problem because I only knew the diagnosis for classic autism and not the ASD sub-types. The community nurse may have actually suspected ahead of us and referred us to the GP to get Tokoroth referred to audiology. The nurse could have done this but the protocol is to go through the GP.

The GP looked at the letter from the community nurse, looked in his hears, clapped his hands a few times (I'm paraphrasing) and reported that his hearing was absolutely fine. The GP did not refer him to audiology. It was a year later that, once more, we presented Tokoroth back to the nurse with our increased awareness of a) there being a bigger problem and b) the likelihood that he was on the spectrum (ASD was, by then, on my radar).

The community nurse was incredibly annoyed that the GP had not carried out the referral. Hypersensitivity does not mean he can't hear or that he has any physical problem. Having satisfied himself of that he should still have carried out the referral a) because that's what he was asked to do and b) because hypersensitivy can be an indicator of other problems, i.e. autism.

So, even armed with knowledge and a bloody good health centre community nurse we lost a years worth of intervention because autism and other similar disorders are off the radar for many, but certainly not all, GPs. It's a known issue and it's being addressed. A GP can even miss her own son's autism.

I'm not being negative here because our GP is a good GP and the rest of the NHS machine around the ongoing assessment has been bloody good. I'm just aware that we had our own knowledge, a child psychologist in the family and a good health centre to keep pushing. I do wonder how many children taken to the GP by their parent fall through the cracks. As recently as 2002 over one in eight GPs said they would not know how and where to refer a patient with autistic spectrum disorder.

Anyway, for us all is going well and little Tokoroth grows into an ever more entertaining and amusing child every day. He is joining in play with other children, his delayed echolalia sits alongside an ever growing vocabulary and his repetitive behaviour is arguably more flexible more than mine currently is. We just keep walking the walk and see where we all end up.

Broader Autism Phenotypes

2009-12-13T00:42:00.006Z

Spending the last few months reading about the suspected aetiology of autism, a lot of the theories about neurons, serotonin and oxycotin really make sense. I think anyone who lives with a child with autism, even if they are not a broader autism phenotype (BAP) themsleves will recognise aspects of their children's behaviour.

For me, as for many other parents of autistic children, learning about the continuum is a revelation but learning about BAP explains not just about the genetic link and the passing on of genes susceptible to autism but it starts to actually shine a light on your own behaviour. It was great to read this from that BAP link above:

“bored, sensitive, and isolated as I observed the social culture around me, feeling uncompelled to jump in and participate in what seemed superficially meaningless. I wasn’t entirely aloof, but I preferred being with only one friend at a time. Too many people made me edgy. Rehearsing social situations in my mind over and over and, but both before and after they had occurred, sometimes speaking them aloud to myself."

I'm still learning about the definition of BAP but informally taking some of the tests I score highly for inclusion in this category and this makes much more sense than my earlier thoughts about being on the spectrum myself, which wasn't quite a fit. I guess it's not really important in the bigger picture of getting Tokoroth the right help but as we look for answers in one place we start to ask questions in others.

Relax!

2009-12-13T00:00:00.004Z

A couple of months back I think I was worried that diagnosis was taking too long while still being very aware that, for us, the process of assessment and the path towards diagnosis was put in place much more swiftly for us because a) we already suspected ASD and weren't afraid to raise it with with the health worker and b) because that same health worker has been amazing in referring him to audiology, the speech and language therapist (who was herself amazing) and organising the in-nursery assessment all within a few short months. For some people this process can take a lot, lot longer.

It wasn't enough for me though as I backflipped and somersaulted through denial and acceptance, yes he is, no he isn't, is, isn't, is, isn't, aaaaagh! I just wanted to know. But more recently, as some semblance of sanity kicked in, or what approximates sanity for me, I started to take in some of the course material I have been learning on SK124 along with the stories I was reading on other parent's blogs along with first hand accounts from people writing about their experience of autism, and started to calm down a bit.

It doesn't matter one iota if we get a diagnosis now, at age three, because they can sellotape a label to his head that says "PDD-NOS" or "HFA - Handle With Care" but we won't have a clue what sort of thirteen year old the three year old will become until, well, until he's thirteen which was exactly the point made in the comment I quoted below.

I decided that it's silly to stress over labels and diagnosis, all that's good for is getting him help in the classroom and they are already doing that sans-label. It's also entirely unneccesary to feel that I have to coax him into our world when it's clearly so much more fun in his world.

Montessori

2009-12-09T22:47:00.003Z

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

2009-12-09T21:14:00.006Z

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

2009-12-09T13:23:00.009Z

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

2009-12-08T23:04:00.005Z

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

2009-12-06T09:19:00.006Z

"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! =)

Is autism just the new ADHD?

2009-12-03T14:55:00.000Z

I'm bookmarking this for interest, the whole article is not long and my mum will probably take an interest. Quoting the best bits.

Is autism just the new ADHD? - SmartPlanet:

"The real lesson here is we need to pay closer attention to individual children, as a society. Each one is unique, with unique strengths and weaknesses. Lumping them into groups, treating them as piles of identical symptom sets, does no one any good.

Autism may indeed be the new ADHD, the label du jour we need to give a kid the attention they deserve."

Conversation. Kinda.

2009-12-03T00:12:00.002Z

There is strong likelihood that as he passes through various diagnostic assessments that things I record here will help build a fuller picture for the teams assessing him. So I'm going to start carefully recording the communication I have with him. The Tokoroth will ask for food and drink. He is now 38 months old. This is what passes for a conversation:

"Do you want a drink?"
"Apple Juice, please."

"Here you are. Say 'thank you'"
"Straw!"

"You would like a straw?"
"Oh, yes please."

"What colour straw would you like?"
"I would like a yellow straw."

"Here you are. Say 'thank you'"
*Slurp*

I'll ask another question, something like "what do you want to do today?" and might, possibly get a single answer ("go Grandma's house") but mostly we'll wait a while in silence before Little M will remind me: "he doesn't really speak, Dad".

As worried as I have become though, mostly about his social future, something about his quiet reserved, observant brightness makes me feel less like he is impaired and more that I am, that I am asking questions that are beneath him, insulting almost. Maybe I should dig out that troublesome quadratic equation after all...

I always wanted a dog.

2009-12-02T23:12:00.003Z

I like dogs. I always always wanted a dog as a child. My Dad had them but I didn't live with him. I had proper imaginary dogs until I was about 11 years old.

Spending a week hanging out and playing with The Tokoroth I realised how many similarities there were with having a pet dog. You play with a dog, you feed a dog, you walk a dog, you get nervous when it is walking by the road without a lead (note to Childline: he doesn't really have a lead), it makes a mess, you toilet train it, it comes in from outside and makes muddy prints before you rugby tackle it to the ground and so on. Yeah, The Tokoroth is just like a pet dog. Where it should be different is the communication. I mean most dogs, even the crazy ones will come if you call it.

Tokoroth does not come when you call his name. If you walked up to him and said his name he's most likely not to look up or acknowledge you. He's not deaf though. If you whispered "chocolate" while you were in the kitchen and he was in the office with the computer on full volume, he'd hear and he'd be there.

Selective hearing, just like a dog. You tell a dog there's a bone, he's there. You tell that dog not to take the bone on the sofa, all of a sudden he's a deaf dog.

You can talk to dogs, you can tell them about your day and they will listen, sometimes attentively and sometimes a bit distractedly as they bait the cat or play with a toy and, well, I think you can see where I'm going with this. So far, so analagous.

The problem occurs when you want feedback. You know? Those times you curly up with your favourite labrador and explain this quadratic equation you are having problems with (you don't?!) and they just look a bit blank. In fact you can explain or tell them anything and they'll happily listen, even look like they understand but they just won't help you solve it.

Here's an example. I spent part of tonight reading a story (George's Marvelous Medicine, Ronald Dahl, if you were interested) to Little M and Tokoroth. Little M pitched in, asked questions and clamoured to see any pictures. Tokoroth lay there looking somewhere between me and the ceiling neither engaged nor disengaged. Just quiet. I stopped reading and spoke to Tokoroth.

"How was your day?" He cocked his head, glanced at me.
"Did you go to school?" No response (he was at nursery).
"Did you see your friends?" No response.
"Did you see Grandma?" No response.
"What would you like for breakfast tomorrow?" No response.

I applied a control question:"Would you like a cup of water?" He replied to this "Oh, yes please!" in his curiously squeaky little voice.

Nothing wrong with his hearing. I've no idea if he understood all of the questions I asked, or not, or only answers the questions he wants to. Possibly a combination of both.

I'll spare anyone reading the science behind this but it's a classic impairment not just of speech, and of an ability to communicate but also to understand my desire for him to answer. Never mind though, he's curled up at the end of the bed making snuffly noises.

I always wanted a dog, right? :)

/End Hiatus

2009-12-02T22:36:00.003Z

Why haven't I written anything for ages? Good question. I set a bit of a precedent with the Space Shuttle post and sometimes I think I should just delete everything but that post and be done. That's what happens when your OCD and ADHD have a fight with your ASD (actually I'm probably, if anything, BAP but more on that later).

Lot's of things have stopped me writing. Mostly fear. Fear of the known and fear of the unknown. I have gone through a strange period of denial where I have started to think, or blindly hope, that The Tokoroth does not have anything wrong with him. This is because as a parent I have to consider a number of possible outcomes about the severity of his disorder. No matter which way the dice rolls it's likely he's going to end up with a Statement of Special Needs. At best he'll be a in a regular school but he'll be 'different'. Different kids get bullied. Fact. Autistic kids get bullied. Fact. Some of them can't even verbalise this enough to tell their parents or carers. All of a sudden I'm sad and scared.

This kid is beautiful, I love him, he's my son. If someone bullies him they really aren't going to want to meet me, even on a good day. But we aren't there yet. It might not happen. He might not even have a disorder, right? Hmmm.

The reason for radio silence for a while was because 'Mum' was away for a week in Barbados and I had a week off work looking after Home and Rugrats. In this time I spent a lot of one on one time with Tokoroth and built-up the strongest relationship I have had with him. In so many ways he is bright and funny that I started to do a "Oh yes he is, Oh no he isn't" dance in my head, one day thinking he was off the chart autistic and the next thinking he was absolutely-fine-just-a-bit-of-a-late-developer.

In fact if you use a Homer Simpson voice and say "he is, no he isn't, autistic, not autistic, yes he is, no he isn't, oh look a dog with two tails, wheeee!" you've pretty much nailed my current mental state.

He ain't heavy...he's my table

2009-11-19T10:18:00.005Z

Last night I put the kids to bed in the same bed. This is mostly on account of not having put the washing away which is piled up on the other bed. It had been a long and grueling day with The Special One. Little M was getting a bit grumpy with a very restless Tokoroth so I decided to give him The Talk.

I explained that Tokoroth was a bit different and that he needed Little M to look after him because as he got older other children might pick on him. Little M was immediately sombre and put his arms protectively around his little brother his chin set in fierce determination. I left them like that, little one curled up in his protective bigger brother's arms while I cleared up.

I went back to check on them a little later and Tokoroth was asleep. As it appeared that Tokoroth was not in any immediate danger and was now asleep, Little M had decided to make the most of having a little bother...

...by using him as a table. Give a little, take a little..

Aftermath

2009-11-18T10:33:00.002Z

Once The Tokoroth was calmed, dressed and dispatched to nursery I took Little M to Starbucks so we could recover. I actually love breakfast time at home usually, today was an exception. Normally I am on full expert-mode for getting kids fed, dressed and out the door. Having failed on this occasion it was clear that we needed help. The help that comes in waxed cups.

Little M had a kids Hot Chocolate and I had a cappuccino. We sat calmly and chatted. I felt less of a failure as a parent. I made us late for school.

As we got to the door of his classroom I was mentally preparing some lame excuse for our lateness but as soon as the door opened Little M shouted up to the teacher: "we've been to Starbucks for hot chocolate!"

Busted!

Tantrums

2009-11-18T10:28:00.004Z

Tantrums are normal behavior for most children and there is no reason why children with autism should be different. Tantrums are one of the most common problems in young children with autism. They appear to go into a state of rage, panic, anxiety or fear for no reason at all. What's worse though is that they last for ages and are inconsolable. All you can do is leave them to work through it...

Unless you are in a shopping centre. I leave you with this vision: yesterday I took him to the Galleria in Hatfield because I was looking for a shoe-rack (don't ask) and he threw a fit for no discernible reason. I picked him up and carried him through a crowd of curious onlookers as he arched his back, went rigid and cried "Help! Help!"

As an adult male I can tell you that holding a child who is shouting for help is NOT FUN! Probably the only reason no-one intervened is because the expression on my face was one of someone who would quite happily accepted intervention.

Argh. That is all.

2009-11-18T09:32:00.003Z

It's Day Three of home alone with the kids. I was looking forward to this week and I'm mostly enjoying it but The Tokoroth is being SPECTACULARLY hard work. You expect kids to be a bit naughty or a bit disruptive sometimes that comes with being a kid. Mostly thought it is possible to talk/negotiate or simply impose your will upon them. Not so, this week, with the little fella. In his mind there is something he needs or wants but he gets frustrated trying to communicate it and I get frustrated with not understanding.

It's a world of frustration.

This morning he should have been at nursery at 8:00. Normally he wakes at 6:00. Today he woke at 7:30 (and there was no way I was going to interrupt him sleeping). Usually he eats breakfast like a hungry hippo, this morning he would not eat. Most mornings he polishes off as much juice or smoothie as is put in front of him, but not this morning.

I bought him a new outfit for nursery but he kept pulling his clothes off. All the time he screamed and screamed. Something was upsetting him, something about the routine was not right. I had done something wrong, in the wrong order or the wrong way but he couldn't tell me. Luckily I had plenty of sleep so my patience reserves were high and slowly, very slowly, he calmed down.

I cannot take the credit for calming him down. Little M suggested putting Mario Karts for the Wii on and letting Tokoroth watch him play. This may have just been a ploy by Little M to get on the Wii before school but it worked (as a ploy and a method to calm Tokoroth).

At 8:15 he was dressed, not screaming, and happily clutching his bag; off to see his friends at school. I dropped him off at nursery and we stopped to look at some pictures and he happily chatted and counted and gave me a cuddle and a kiss before running into class.

That. was. gruelling.

Onwards to the ADOS

2009-11-11T22:42:00.003Z

It's a slow multi-step approach to diagnosis of autism. This does not really cause a problem, we are still more than early enough for timely intervention, and the multi agency approach has evolved over time and allows a number of observations and diagnostic interviews to feed into the final assessment.

Received a letter in the post today:

Thank you for your referral to the community paediatric team. This referral was discussed together with all the avalable information from both home and school in our multi disciplinary community paediatric meeting.

It was agreed [the child] will be offered an appointment in the child developmental clinic in due course."

What this means is that in a very short time (compared to some) we will have moved from raising our concerns (and had them validated) to the final paediatrician-led ADOS which, so far as I know will lead to diagnosis.

So far, my money is on Pervasive Developmental Disorder - Not Otherwise Specified or "not autism".

The way he is currently improving I'd even dare to hope that it's just delayed onset of language and he's just lazy like his Dad.

Repetition, Repetition, Repetition.

2009-11-09T20:19:00.005Z

Diagnosis, if and when it comes, of an autism spectrum disorder will be based on what is observed during the Autism Diagnostic Observation Schedule (ADOS). This allows for a formal diagnosis based on criteria which has been developed from Wing and Gould's original description of a 'triad of impairments'. A feature of these impairments is 'repetitive behaviour' often coupled with strange language.

I think that possibly qualifies.

However, if I can get him to add some lemon juice and pepper then he is already halfway to a tasty Thousand Island Dressing...

The Space Shuttle

2009-11-08T21:10:00.000Z

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

2009-11-08T15:34:00.000Z

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)

2009-11-02T20:46:00.000Z

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

2009-11-01T14:36:00.001Z

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

2009-10-30T07:53:00.000Z

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

2009-10-28T08:14:00.000Z

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

2009-10-27T13:59:00.002Z

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

2009-10-26T17:00:00.000Z

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

2009-10-25T22:39:00.001Z

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...

2009-10-25T22:19:00.000Z

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.

The CDC

2009-10-22T14:58:00.000+01:00

After the standard '3 year old' assessment where it was quite obvious the clinician wanted to refer The Tokoroth an apponitment for a Child Development Clinic (CDC) was duly booked. We were told that this was a long day and many questions would be asked about various aspects of the pregnancy and birth as well as his early years. The Tokoroth was not required to be present at this 'CDC'.

In the event it was, at best, an hour or so of going through a questionnaire which is a series of forms of fact finding which gets discussed at a monthly 'Intake' meeting where kids with the most need are identified and suitable next steps planned.

So far as I can gather from this stage on we have: audiology/speech therapy, a classroom assessment (which was actually booked separately by his Montessori nursery but gets factored in) and finally the session with the pediatrician with, eventually, a diagnosis one way or another.

What is a Tokoroth?

2009-10-18T23:15:00.000+01:00

We jokingly refer to our youngest son as "The Tokoroth", a term found in Michelle Paver's wonderful series of books, The Chronicles of Ancient Darkness.

A Tokoroth is child which has been kept cold, without light or love until it's soul breaks, by the Soul Eaters, until the body becomes host to a demon when it reaches a certain age.

A little harsh at face value but he can be a devil at times! :)