The Diagnosis: Part 2

This week we finally received our formal letter confirming L's diagnosis on the Autistic Spectrum.

To say it's been a long time coming is an understatement and whilst I don't doubt the care that everyone has taken over the process, and of course the need to ensure it is right, there is clearly a problem with the beaurocratic process behind those giving the care which can be at best frustrating to parents, and at worst damaging to a child's education, welfare and wellbeing.

So, following on from my blog some time ago on our initial suspicions with L and the incidents which triggered our initial referral, I thought I would go through the rest of the process we went through.

Following L's week long exclusion from school as a result of a scratching incident - a reaction which seemed wholly disproportionate and out of the blue and which garnererd a strongly worded letter to the School Governors to which we yet await a reply - we were referred to a child specialist GP.

This was some 2 and a half years ago, around April 2010.

The GP we met, following an extensive search for an appointment with her, was very kind and after we described L's behaviour and following a short assessment of him herself, she asked us to complete a questionnaire.  This was also sent to the school in order for them to submit their responses as well.

It took almost 6 months before we got to see her again - mostly due to delays from the school in replying to the questionnaire.  In their defence, they did say they completed it and that it must have got lost in the post.

Following our second visit she referred us into the local Children's Hospital where we met with a specialist in Child Mental Health.  This was January 2011.  Again L was assessed, asked some questions, and we went through the situation as we saw it.  We were very clear as to what the symptoms were.

At this time, L's behaviours were of the order of over-reacting, physically harming other children and generally being on a hair-trigger any time someone was in his space.  He held no eye contact with anyone and did not play well with the other children at school.  He would act selfishly, almost ignorant to the existence of other children when he was trying to do what he wanted.  He did have friends, quite a few very close friends as well, and his social skills, whilst very specifically focussed on himself in an egocentric fashion, were there.  One of the key facets of Autism is the social disengagement.  The lack of a reference point to other people, and the inability to empathise.  L did not exhibit this behaviour in a pure form, although it was clearly a part of his non-typical resopnses.  This is part of the reason why there is an Autistic Spectrum, but also makes diagnosis very difficult.

There followed a series of meetings with the Educational Psychologist at school, with the Children's Hospital teams and with the specialist GP.  Every meeting required us to chase up, ring and demand progress to be made.  None of the meetings or appointments were coordinated or less than 3 months apart.

Eventually (probably around autumn 2011) we met with someone from the Family Support Service who acted in our interests.  It was quite surprising having by this point spent 18 months bouncing around the system that actually someone was there to help us.  And I am not referring to L, L was always in receipt of the best and most sympathetic of care and attention.  Us as parents.  Someone to help us navigate through the process, to chase up appointments, and to give us answers as to what should be happening next rather than being left to our own devices to guess and decide whether we were just being pushy or if actually we should have taken the next step by now.

It was shortly after this that the official diagnostic assessments took place.

This took the form of L being assessed by a specialist, with us the other side of a one-way mirror.  I found the process intriguing and picked up how L was engaging with her in a number of ways, but then failing to engage in some other very specific ways.

A good example of one of the exercises to illustrate this point was when an imaginary sink was drawn on the table with the lady's finger.  She explained where the taps were, where the soap was etc.  Then she placed a sponge on the table.

She asked L to describe how he washed his face.  Duly, L picked up the sponge and wiped his face.  He was told to make sure there was water on it and duly pretended to turn on the tap.  Next she asked him to brush his teeth, with no toothprush toothpaste or taps visible to start the process, L struggled.  The difference was that the sponge acted as a literal trigger.  Something he could hold.  He could then imaging the rest of the bits.  When asked to imaging the whole lot, he simply couldn't do it.

The result of this assessment was inconclusive.  I recall the feedback we had with the assessor afterwards, how I highlighted these areas where L struggled and how it was reflected in how he behaved at home.  Yet, it was inconclusive.

We continued our demands for an assessment and eventually, a few months later, we received a visit at home from the chair of the ASD assessment panel.  She viewed L at home and a few days later at school.  She told us afterwards that L was borderline from what she had seen, but what was clear was that the school were coping very well with L's needs and managing his behaviour well, and that without this, he probably was on the ASD spectrum.

So, now 3 months after the verbal decision was communicated to us following the meeting of the panel, we have the letter.

About bloody time!

Liveblog: The School Disco

Earlier this evening, I escorted L to the school Autumn (Fall for my US readers) Disco (a form of dancing  often to popular music for my US readers, not featuring any Trammps).  I decided to Liveblog on Twitter the evening and to save you guys missing out, below is the transcript...

School disco live blog in effect. Blogging it Gangnam Style

For the uninitiated this is in support of my blog about raising an autistic child.

L has the moves and fighting his natural male urge to run like a loon around the hall. He has been briefed in case of collision.

One Direction. Cue rainstorm of dayglo bangles. L has been limited to 4 and tastefully selected 4 dark red ones. Nice.

Now mildly obsessed with how they can connect to his belt. They will end up all over the dance floor which will be an interesting challenge

Bangle modes tried: daisy chain. Belt buckle. Handcuff. Bangle. Necklace. Leave with dad. #schooldisco

Can you call it camp dancing if they're only 8 years old? Enjoying a candy watch. That's not euphemistic. Oh god. #schooldisco

Party rock anthem. Rainbow drops 15p. L came back saying he only had 40p. Quickly amended his error. "I'm death" is his reply.

IT'S CONGA NIGHT FOR SURE! L second in line. Setting the pace. Centrifugal swinging problem averted.

DISASTER! They've internalised the conga, working into the middle surrounded! This could be the longest key change verse chorus in history

they made it, but the DJ wants blood. Next circle of hades, the hokey cokey. #schooldisco

Phew. It's the CBBC slow paced Justin version and L decides to sit it out, but oh no, what's this... #schooldisco

Musical statues. Keen blog readers will be aware of the problems with L's issues with competition and losing. I sit with fingers crossed.

Kind DJ. Games but no losers so far. Everyone too good. Dancing contest next. Winner gets the balloon hat. I predict no problems if L loses

Jesse j. Logistical problem. J has a green bracelet. L needs a green one too therefore. Sold out. No swappers. He's building up now.

At least it distracted him from the competition. Hope he gets distracted again now! Personally, I think the red look v cool. #schooldisco

LMFAO, and relieved and I know it. J has given L his green one. How does that work? #autism #schooldisco

L is physically hot now. Despite removing jumper outside, we are entering the danger zone. JLS oh oh oh oh oh oh. #schooldisco

‎5 mins to go. Fingers crossed for a damp squib ending and no fireworks! I can't believe how hard some of these kids are hitting the floor!

House lights up. Music off. Kids on the floor. It's a formal ending to the eventless evening. There's a first! Thanks #schooldisco #autism

A bit unusual for an entry, but hope you enjoyed it.

follow me on Twitter @bbtom10

A multitude of help, so why the struggle?

I'm sure I will get around more to describing the diagnosis process soon, but today I feel compelled to write about the sheer number of different people involved in helping us find L's diagnosis and to support us now that we have.

To be honest, we saw so many different people, often in the middle of the day whilst I took a few short moments off from work, that I didn't remember who was who, or more importantly where they were from and what they were doing there.

Just as a list, to demonstrate what I mean, we had meetings with the following people:

 - School (Teachers, Head Teacher, Special needs coordinator, not her real title!)
 - GPs (our Gp, and a local child specialist GP)
 - Children's Hospital (2 different consultant specialists, nurses - who constantly mis pronounced L's name - autism specialists, assessors)
 - Parent Partnership, often at the school but sometimes at home
 - Educational psychologist, also at school
 - Educational support - usually from the council, to support L in the early days by giving him special time and attention
 - The Autistic Spectrum Disorder panel - we never actually met them as a panel, but I'm sure some of them we have seen
 - Family Services - probably the most helpful, Kath has been very kind in guiding us through the process and maze of people, again based at the Children's Hospital.

So, all in all, probably at least 14 people - I'm pretty sure all were women too, come on men, don't you care? - in a little over a year, all doing different things with different agendas.  Some tried to help us, some tried to help L, some tried to diagnose him, others tried to manage him.

So a word to anyone starting this journey yourself, keep a little notebook just to keep track of who's who - having the right person to speak to when you have a quesiton, or don't have the letter you need, or need to rearrange an appointment, or just need to say hello to without forgetting their name - would be my tip of the day.

Other people's stuff: Autism Video

Some of you may have seen this before from my Facebook, but it is a beautiful thing and very well done.

Lose at all costs

Well, what a summer it's been, with London 2012 being a spectacular success in both paralympics and olympic events wowing the world, Andy Murray on the cusp of greatness, plenty of golf, cricket and even a presidential election (surely the biggest 'sport' in America) to get excited about and England's love affair with football on the wane as every other sport in the world seems to be better and more honourable and above all else teaching us that Britain can actually win something.  Anything!

It brings to mind something I read a long time ago about the British spirit of sportsmanship and fair play, and that it is the taking part that counts.  Now, even the government has pledged to introduce competitive sport at almost every level in schools, the mid-life crisis now apparently involves lycra and expensive bicycles rather than sports cars.  Everyone wants to win!

I am greatly encouraged by this because I enjoy sport very much and I want to see Britain on top of the world in sport, not only for my own entertainment, but also for my children.  Ahh, what a wonderful future awaits them.

There is one small problem however.

L is a creative kind of guy.  He loves nothing more than a new set of lego or some Fimo and to set his mind free to create something beautiful, thoughtful and spectacular.  As most 7-year old boys do though, he also loves computer games.  And this is where the problem lies.  A problem I am concerned about for the future.

You see, on his own, he is great, he loves playing on his DS, out iPhones, my iPad or the Wii, even the Nintendo 64 is enthusiastically received.  But throw in another competitor and the fun drains out like the water from a giant paddling pool after a big fat guy tries and fails to leap over the side.  Yes, he got £250 from 'You've been framed', but it would have taken a long time before he saw the funny side I am sure.  (And have you seen how expensive those giant pools are?!).  For L, this is often H, or myself.  As soon as things look like they are going awry, say 30 seconds into a race in Mario Kart and a giant chomp gets him, his frustration boils over rapidly.

This boy either has a will to win at all costs, or simply cannot accept any defeat.  Even the prospect of defeat triggers a tantrum within seconds.

So, I wonder what happens at school when playing football or tennis, or when he plays with his friends.  I have mentioned before about his desire to direct the action.  This will to win is more destructive.

So, I don't really know how to deal with it - whether to try and help him control his temper as he plays, heading off tantrums with positive comments, or whether to avoid it all together?  As the government's pledges come to reality, he will be encouraged to win.  He will be happy to win.  But what happens when he doesn't?

I don't know whether he will learn and get used to it - history over the past fw years suggests perhaps not - or whether he is destined to be labelled a sore loser by his schoolmates as he throws tantrums, racquets, footballs around the playground.

It's another thing to work on I think, but in the meantime there is one lesson to learn for anyone playing with L at anything.

Lose.  Lose at all costs!

Dealing with the stress of it all

It's funny how on the one hand, we try and do things in a relaxed calm manner, whilst on the other, when we aren't trying, we react quickly and unfairly.

I've always been a fairly laid back kind of fella.  I have no idea if others share my experience, but as I was growing up I would often think of what kind of parent I would someday become.  Everytime I was shouted at or grumpy with my parents, I made a mental note not to make my children feel the same way, and yet here I am.

I always thought I would set my own rules and never forget what it is like to be a child.  I would never say 'just because' when I didn't really have time to answer a question.  I would always be there and encourage and support my kids.  Most of all, I would never snap or shout at them just because I've had a bad day and they asked the wrong quesiton at the wrong time.

Well kids, you can make your rules, but there will always be times when things get the better of you.

I realise that my parents had these same rules, and that 99% of the time they followed them with the same kind of determination my dad showed when trying to light a barbeque.  Never give up and put the effort in and you will be rewarded accordingly.

As a child though, it was very difficult enduring the very few 1% occasions, and as I look back on it, I realise that this was nothing to do with me, but just bad timing as my parents struggled with one of the million things parents have to deal with.  Sometimes, there's more to life than making lego or buying the Beano.  Providing sustenance, a roof, trying to better yourself and your career.  Heaven forbid a parent looks after number one once in a while!

So here I am today, being the best Dad I can be, and yet still I have my 1% occasions.  I think my children were sent to challenge me and they certainly do.  They can ask wonderfully exquisite questions and make endless enquiries into life and beyond (or why when in in human form Ben Tennyson can still withstand massive physical alien attacks, yet his foes are easily vanquished at the flick of a wrist).  They can also push you to your limits.

I suppose my point here is that we should feel guilty when we shout at our children, but not too guilty.  Hmm, doesn't seem a very definitive conclusion to me.

Anyway, the point of this entry is that stress can come in all forms.  At the moment, H is into his 3rd stubborn week of refusing to eat fruit.  He never has eaten fruit (aside from a lick of apple once and a nibble of watermelon) and we have tried everything.  But 3 weeks ago we took a stand.  We refused him any sweets or treats, and bought him a big toy as incentive.  Even now, sat above the TV, lies a 2 foot long Star Wars blaster gun, full electronic sounds and flashing lights and chosen by H himself. 

Me:  "You can have than when you eat some fruit".
H:  "I will never eat fruit".
Me:  "Then you won't ever get your gun"
H:  "ok".

And off he trots.

This child has a diamond will, a titanium strength determination to do what he wants.

Now, I know as a good parent, he should eat fruit, and I don't want you to think we don't give him anything, he has veg hidden in sauces and dinners, he eats carrots, he will even have the occasional innocent smoothie (the purple one), but fruit is the barrier that will not be crossed.

This causes both my wife and I to stress.

This blog is about L though, and what is really quite upsetting is that L doesn't like there to be any disturbance of the force in our house.  So when wife and I are cajoling H again to eat some fruit L gets upset, and demands we stop.  We threaten, we promise, we reward, all for H's benefit.  We do explain to L as well why we are doing it but I can understand why when we are raising the roof in superhuman effort to get H to eat fruit, he finds it upsetting.

So with one person shouting at another and a third shouting to stop it all, sometimes I am in the 1%.

"Worst Dad ever" Follow-up

Following my earlier, rather dark post, I would like to add that all by himself, L retracted his statement this afternoon, confirming that he didn't really mean it and was actually very happy that I was in fact the "Best Dad in the World".  I'm sure I have a mug to prove it anyway so I wasn't really concerned, but it was very nice of him to realise he had upset me earlier and to retract the statement.

There followed another tantrum when I asked him to stop playing with my iPad, but this only resulted in 13 stars being added to my naughty chart, which he actually invented today for his younger brother, but which he made a special column for me to document my naughtiness to him.

Finally, this evening he came out of bed and walked downstairs to declare, very happily, that he had now blown his nose himself for the first time.  At 7 years old and with a history of hayfever in the family, this is actually quite an achievement.  One of his non-typical behaviours is his mild obsessive cleanliness, especially in that he doesn't like having dirty hands or a dirty face.  Any hayfever sufferer out there will know the tolerance required for heavy nasal excretions using a tissue and the need to be able to manage the fallout around one's face.  This is the most difficult matter for L to deal with, so this evening's achievement is all the more wonderful for that.

There.  I hope that was  a little lighter of a post.

HEADLINE: “Worst Dad Ever” Tragic suicide

“A young, handsome father of two boys has committed suicide following a cruel indictment from his son, labelling him the “Worst Dad ever” in a hand-written note.

It is understood that the young man received the note following a treasure hunt game with his two sons which turned dramatically sour following delivery of a “very bad map” to his eldest son, 7. Following his efforts to find a fun distraction following a shopping trip to Wickes and Aldi earlier in the day, Mr T decided to draw a map of the garden for each of his sons and hide 6 of their favourite toys, marking each one with a cross to identify their location. Unfortunately, his eldest son could not locate any of his toys and whilst his youngest son, 4, sought help from his loving father, the eldest instead threw what was described by neighbours down the street as ‘a massive tantrum’. The witnesses state that the tantrum lasted between 4 and 7 minutes with the boy shouting “that was the worst map ever”, “rubbish map” and “I hate you” and Mr T showed a great restraint in not raising his voice, however what followed was clearly distressing to all concerned.

The son disappeared for a few moments while the well groomed man started to mow the lawn before returning with a hand-written note. On it in his own handwriting he delivered the crushing verdict.

"was dad evre"
He knew that this translated to “Worst Dad ever”.

He continued in his task to mow the lawn for a few more minutes before suddenly breaking into a sprint with the lawnmower, heading directly over the power cable for it’s full length, making corrections as he ran to be sure he cut the cable and it’s blissful release of electricity surged through his body before collapsing to the ground, his now smoking corpse quivering as the final volts surged through him before a final bang came from the house as the fuse finally conceded defeat and ended the torment.

The family of the attractive man confirmed that his son is autistic and that his tantrums are not rare occurences, and the shock of the suicide is made even more acute by the fact that he was apparently dealing well with his son’s condition.

It is a tragic illustration that the pen is mightier than the sword, and that even when things all seem ok, beneath there lies a field of magma waiting to erupt.”

I would just like to point out that the story above contains many facts, but is mostly the documentation of my internal feelings.  Except for the suicide bit, I'm not that emotionally fragile. Sometimes it is hard to ignore hurtful things, even when they come from the mouths of babes.