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.

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....

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.

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.

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.

Letters I would like to write..........

To my new neighbours


The bin store is located at the back of the building just behind the bottom of the stairwell a few yards from where you abandoned your full rubbish bag and the flattened cardboard box. I can see from the full bin bag that putting rubbish in such a receptacle is not an alien concept. Perhaps you would like to take another bin bag and fill it with the coke bottles, bread crusts, ciggie packets, dog ends etc etc which appear to have been abandoned on the stairwell (and on my door mat) since you moved in.

I am giving you a week to settle in by which point I would hope you will have cleaned up after yourselves – if not I will ring the Council.

Oh and welcome to the area.



To Basildon Council

The big H.O.L.L.Y.W.O.O.D sign in the Hollywood hills denotes glitz and glamour. A similar sign in 5 ft letters spelling out the word B.A.S.I.L.D.O.N on a small rise alongside a busy road does not denote the same glitz and makes Basildon look even more ridiculous than it already does on the eyes of the world. Lighting up the letters at night is just unnecessary and screams “chav”.

                                  Why? I mean...... just why?



To Everyone who has said “you must be relieved to have a diagnosis for J”

Thank you for all the support we have had as it was a real shock to hear “ASD and ADHD” (even if not totally unexpected). Yes I am relieved that J has a diagnosis and a label to hang all his little quirks and odd behaviours on, I am relieved that this will be the kick up the bum which the Local Authority needs to provide him with that elusive Statement of SEN which will lay down in a legal document what his educational needs are and how they will be met, I am relieved that J will finally get the support he needs.

But actually....

I am not bloody well relieved; I didn’t want to hear “ASD and ADHD”. I wanted to hear “a bit immature but nothing which won’t correct itself as he gets older”. Not for anything in the world am I relieved to hear that my darling boy has a lifelong disability which will make his life much harder than if he did not have ASD and ADHD. I know there are plenty of people who do well in life and who are on the autistic spectrum – Einstein for example is suspected to have been autistic. But I don’t recall him having an easy life nor any of the other “autistic geniuses” who have been quoted to me since we were told J’s diagnosis.

And finally.....



To Dru

Dora the hamster is a pet, a friend and part of the family. She is not now or ever a plaything, a meal or a source of entertainment. Please could you stop sitting next to or even worse “on top of” the hamster cage. Admittedly Dora does not help matters by being a one hamster escape artist – all I can say is that she must have 9 lives pretty much in the way you have to have survived this long in your company.

D-Day

Finally at age 7 and after 2.5 years of assessments, support in school and varying meltdowns we have been given a diagnosis for J. That diagnosis is Autistic Spectrum Disorder with co-existing ADHD to add to the fun. While getting a diagnosis is a relief and a reason for all J's little quirks it was also a shock. The confirmation of all the suspicions I have had (and hoped were incorrect) was like a punch in the stomach and only 48 hours later do I feel like I have begun to absorb it all.

J is autistic - not high functioning autism or Aspergers as I was suspecting because his social skills are actually not advanced enough to meet the criteria for those - that was the punch in the stomach.
Recently in school there have been several incidents which have culminated in J assaulting other children much to my sadness and disbelief. There was also a dreadful meltdown during the car journey home one evening after I commented to J that he looked tired and shouldn't use the Wii that evening. J raged and kicked and screamed then finally took a shoe off, held it to my face screaming "I hate you - do you want a piece of me"? This is a line from Toy Story, a film not known for it's violence and I was shocked by the raging.

After J was born I suffered severe post-natal depression which made life very hard, I was constantly tired, had no desire for life and caring for J was difficult. Recently I had begun to wonder if J's problems were down to my post-natal depression. There has been various research looking at how PND in mothers impacts upon babies and especially baby boys. This was enough to make me feel desperate and to start a bit of self blame. I had even got as far as making an appointment with my GP to discuss a referral to the children's mental health team. I reasoned that if my PND had impacted upon J negatively then the attachment must be all wrong and that this was my fault. I even attended a lecture about "Disordered Attachment" and listened anxiously to all the signs of good attachment as opposed the disordered attachment. I was relieved to note that J and I ticked all the boxes for good attachment but still felt my depression must be partly to blame.

On Thursday 25th March we attended the appointment at the Social Communication Clinic, to be honest I wasn't sure what to expect. I thought it would be a short appointment with the promise of further assessments and follow ups. In fact the clinic already had the previous assessments done in school by the speech and language therapist (SALT) who specialized in social communication problems. A different specialist SALT was present at the appointment along with a paediatrician and a worker from SNAP (Special Needs And Parents). The SALT took J off to play some games with him - he went willingly and during this time the paediatrician took a long and detailed history form myself and J's Daddy. We talked about everything, all the quirks, the prolonged headbanging as a toddler and small child, the obsession with washing machines as a small child, the problems in school, the hand flapping, J's distractability and attention problems, the rages, the lack of eye contact at times. The paediatrician asked if J had been overly interested in Thomas the Tank Engine - a question I was at loss about until I read about the love autistic children often have for Thomas.
Finally after nearly an hour the paediatrician asked us to wait outside while they discussed the outcome of the assessment and also the observations of the SALT who was still playing with J. It was then that I realised we would actually be getting an answer (possibly) that day.
We waited anxiously - part of me wanted a diagnosis of high functioning autism or Aspergers as it would provide a label to hang all J's problems on, the other part of me did not want that at all - no parent wants to think that their child who is already finding life difficult will continue to do so.
J joined us happily and talked about playing games, he appeared to have enjoyed himself. Finally we were called back in, I left J with his Daddy in the waiting room I wanted to be able to hear without interruption. J was not happy about this so squatting down to talk with him I tried (and failed) to get eye contact. Finally J accepted that he would stay in the waiting room and as I walked down the corridor with the paediatrician she asked me if I had noticed that J had not made eye contact with me but had looked beyond me. I knew then that we would have a label for J's behaviours.
The SALT asked me how I coped as she had spent an hour with J and was exhausted. Then the paediatrician told me that in her opinion J had Autistic Spectrum Disorder and probably also had ADHD although she would need to do more assessments to confirm the ADHD. Apparently ASD rarely exists as a stand alone problem and there are usually co-existing problems. The paediatrician suspects that in J's case this co-existing condition is ADHD.
The worker from SNAP stepped in to say that she was impressed by how we had coped with J and it appears that far from causing J's problems he is all the better for having had good parenting (Mummy will take a little pat on the back and a sigh of relief here). SNAP will be making contact with me over the next week to arrange a visit to their centre. They will support me in applying for DLA, they will support me with behaviour management.
The paediatrician says she wants to see J again in six months and although I am still shell-shocked it feels a relief to have an answer finally. Now the fun begins - the pressure will be applied to the local SEN board for a Statement of SEN and I am going to push them for full-time one to one support in school so that J is always supported and helped.
I am proud of J and I love him so much, despite such difficulties he is on the whole a gregarious and sociable little boy