"Daddy read it..."

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.

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.

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

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?

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

❝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.

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

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

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!

(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,