Horses for Courses

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!

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!

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

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

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!

He'll talk if there's food involved!

"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.