Tuesday, 27 April 2010

Conversations with my son.

Last night I had the following conversation with J who started by telling me why he didn’t want to go to school today.

“I don’t want to go to school because I don’t like assembly”

Assembly has been the topic of conversation a few times with J so I dug a little deeper.

“Why don’t you like assembly J”?

”I don’t like assembly because I am bad and I got sent to the office”

“What did you do that was bad”?

“I can’t behave myself and I am naughty”

“What did you do that was naughty”?

“I can’t behave myself”

"Yes but what exactly did you do"

"I was bad"

We went round in circles like this for a few minutes with J seemingly unable to explain what he did that was bad or naughty or misbehaving. I am always wary of putting words into J’s mouth but can quite imagine the difficulties which might occur if you sit J in a largish hall with echoing sounds perfectly designed to overhype his senses. So I asked him if sitting still was a problem and back came the affirmative. “So” I said “you don’t like sitting there and you end up getting up and fidgeting”?

“Yes” said J “and I got sent to the office and so I cried-ed”

And then came the heartbreaker

“I am a fake boy”

“What’s a fake boy J”

“It means I am no good and I am stupid”

“No you are not stupid and you are good”

“No I am a fake boy and I need to be sent back to heaven”.

Cue lots of tears

Somehow I suspect his self esteem is rock bottom and that is not good. It stands to reason that if everyone around you is sailing along and you are not, if everyone else finds life a breeze and you don’t that you might start to wonder why.

I am now on the point of wondering how I explain autistic spectrum disorder and ADHD to J.

Maybe I start with “you are special because you think differently to other children”

Or maybe I watch a bit of the "Young, Autistic and Stagestruck" series with him.

Or maybe I find a book which explains his differences in a gentle way.

Whatever the choice I eventually make the fact is that at some point I will have to have that conversation with him rather than leave him floundering and wondering why everyone else can manage X, Y or Z and he cannot.

Saturday, 24 April 2010

Young, Autistic and Stagestruck!

Young, Autistic and Stagestruck is a Channel4 programme following a diverse group of youngsters with one similarity, all the children and young people taking part are on the autistic spectrum like J. As J has so recently been diagnosed I was keen to see the programme and  see what  similarities the participants had with J. 
The parallels hit me in the face immedietly the show started as we saw Mollie a little girl with a BIG personality also on the autistic spectrum. Programme One opened with Mollie and right away I saw the likeness with J, I watched knowingly as she raged "I hate you" at her Mum, I recognized the self harming (hitting herself on the head) when raging and in Programme Two watched her head bang in temper as J still does at times and heard the same "er er" noise which J makes. J's Dad was watching some 170 miles away and we rang each other during virtually every commercial break "oh my goodness" and "did you see"? The similarities between Mollie and J were amazing and for the first time I could see how and why J fitted on the autistic spectrum.
Since seeing the first programme I have joined the Facebook group dedicated to the programme and after posting on the wall about the parallels between J and Mollie was touched to receive a message from Mollie's Mum. Mollie and J are indeed very similar - like peas in a pod in some ways but also poles apart and I don't envy S (Mollie's Mum) one little bit. However, Mollie's  actions are more marked and her behaviour is far more challenging than J's. Mollie's rages can be daily and last hours or even days, J's are shortlived and he can (at the moment) be distracted (thank goodness for ADHD - even his rages are unfocused).  I was even more in awe of S when she told me her older son has cerebal palsy but understood when she said she could cope with 20 of him but only 1 of Mollie! Truely the autistic child can be a challenge.
I am so grateful to S and P (Mollie's parents) and to Mollie for agreeing to take part in this programme which is opening up to a wider audience an understanding of what parenting the autistic child can be like. The rages, the intelligence, the talents (hearing Claire sing was lovely), the kindness and gentleness of Andrew, the fierce intelligence, anger and sadness of Ben who made me laugh out loud in the first episode by saying tartly (in response to the interviewer's question "Are you autistic"?) "Of course I'm autistic, what a stupid question, we could have done this interview over the phone". Ben's intelligence masks anger and an inability to cope with social communication which makes him say "I want to die". He knows he is different and does not like it. Other children had different problems, one used to smear faeces which must be a hideous problem to deal with,  others had been diagnosed at a late stage with a parent saying "I always knew he was different but nobody would listen". Varying children and young adults of varying ages - all demonstrating the similar traits of the autistic spectrum. I can't wait for the next installment....

Wednesday, 21 April 2010

and now what?

So –  a month has  elapsed and people are aware of the diagnosis which we received for J. The responses have been overwhelmingly supportive towards us and I am beginning to think towards the immediate future.  In among the positive stuff are the various “other bits” the comments that “ he doesn’t seem autistic” and “ are they sure”. These comments irritate me as they are similar to all the disbelief that goes through my own head. Yes “they” are sure about the ASD diagnosis – they spent over an hour observing and assessing J in addition to the reports from previous assessments both in school and at home. There is no doubt regarding the diagnosis and the only unknown factor is exactly where J lies on the spectrum. Even that is relatively easy – J is definitely at the high functioning end but not considered to meet the criteria for Asperger Syndrome.
In looking at J I notice the things I have always noticed but which in the context of his ASD diagnosis make much more sense. The echolalia for example – the stock phrases from films and TV programmes he uses in his communication, the echoing and repetition of phrases again and again so that I sometimes want to snap “be quiet”.  Not a good sign.
More than anything I notice the fact that his verbal skills mask a little boy who finds social situations and rules utterly confusing. On first meeting J he can appear to be very communicative (and he is), he will talk the proverbial off a donkey but dig a little deeper and the confusion will surface and this is behind his conflicts with other children when they occur. I am aware that at 7 all children can have their moments when social skills fail them. For J though this is more of a regular occurrence as he lives very much in the “here and now” hence the rages when things do not go his way.
 Watching J with his cousins recently was distressing as he failed to accept and understand their desire to change from the game he wanted to play to another game. They wanted to play Charades, and they wanted to act out film titles and book titles. It was totally beyond J even with the help given by L his older cousin and he went into a bit of a meltdown. We left and went home where he could play with Lego, use the Wii and generally understand and predict the outcomes.
I notice the meltdowns and the outcome of these, J will rage and scream, he will tell me “I hate you” and he will hit himself on the head in frustration.
If the surrounding environment is too loud and echoing J may (but not always) hit the floor with his hands over his ears.
So – all in all we are watching and waiting to see what the immediate future holds. I’d be lying if I said I wasn’t nervous about this.

Friday, 9 April 2010

A walk in Spring.

Today it is beautiful and a real glimpse of the lovely weather to come (hopefully). I had a day off work, the sun was shining and J was ready for a walk. Accompanied by Nanny we headed off for Dunton Nature Reserve and bought duck food for the lake birds and an ice lolly for J.
The ground was muddy in places and J found plenty of opportunities to sink his feet into soft mud - opportunities which were not wasted!
The blossom was in full bloom and everything was bursting with life and promise of riches to come. The birds were in fine form and the air was filled with melody while the rabbits scuttled around half hidden in the densely wooded areas.

J looked and listened and noticed different things - the stony remains of a house post and trees which had been felled and which provided a home for all manner of creatures.

J was keen to get to the lake most of all though.

J fed the ducks, geese and coots with the bagful of food he had. Once this was empty then he harrassed nanny for the remainder of the bird feed she had.

He found some very hungry birds at the lake and they were pleased to see us. There were one or two punch ups between geese and ducks and a few between warring males and females. In the end though I think all were fed happily and the bags were packed safely away to be swapped for a lolly on their return to the visitors centre.

We continued the walk all around the lake and I enjoyed the chance to breathe in fresh air and watch J as he ran, fell, laughed and cried at various times. We left the lake behind after watching J wobble and nearly lose his balance while standing precariously at the edge of the lake. I asked J if he had tried to fall in the lake on purpose - the answer was an emphatic "No" but then "I just wanted to try and fall in Mummy". Thankfully he failed in that little endeavour.

We headed back to the car  and through more muddy puddles. The visitor's centre gave a J a lolly in return for his empty duck food bags and a second lolly "to put away for tomorrow". Now we are home and the jeans, trainers and T-shirt are in the washing machine. Ben 10 is on the telly and J is lounging on the sofa eating crisps. All in all a good day I reckon.

Wednesday, 7 April 2010

The Natural History Museum

Yesterday we took J up to London and visited the Natural History Museum.

J really enjoyed the train journey up there and made the most of a window seat.

The weather was lovely and the queue for the museum was  very long much to J's disgust. However, the queue moved quite quickly and we were soon at the front.
J was fascinated by all the dinosaur bones and fossils. We ran from fossil to fossil scarcely taking anything in. J doesn't really "do" concentration but neither do most 7 year olds in such an exciting place. It was very crowded and we had to manage J with severe sensory overload. Generally J found it fun but the constantly bursting balloons were a big problem especially when we went to the restaurant. The first bursting balloon madr J jump, the second one some 30 seconds later led to fingers in ears and the third one about 20 seconds later saw J clambering under thye table for safety.

J really liked this Opthalmosauraus and
we had to take several photographs of him with it.
The Opthalmosauraus is a type of Icthyosaur and there were many fossils in the museum of this
particular creature.

Once J had been totally overloaded with sensory stuff we took him outside for a much wanted ice-cream which he thoroughly enjoyed as you can see. Lacking any wet wipes (always the organized mother me) I did the one thing I always said I would never do - wet a tissue with saliva to clean him off much to his utter revulsion because "now you've put your germs all over me Mummy".

After this we embarked upon a two milish walk across London and through Hyde Park to get to Soho Square and various chain type restaurants for supper before getting the 19.40pm train back to Laindon and the car. J was exhausted by then and fell asleep within half an hour of getting into bed (a record). It was after 9pm but still an improvement upon some of his other evenings. I guess he just needs a good long walk every day.