Saturday, 31 May 2014

Horror Friday

Autistic Meltdown - Horror Friday

Autistic Meltdown 

Ryan was again temporarily excluded for throwing a chair at the headmaster. Ryan was able to communicate enough to say he hates school. No one likes him, the class is too noisy, the lights hurt his eyes. Said he wished he had not been born and that his head is too full of memories. He can’t concentrate when the teacher asks a question because he keeps remembering other things.

I took Ryan back to the GP again who this time did agree to refer him to Paediatric team. I went back to school to discuss this with the head but Ryan refused to get out of the car. He was literally petrified of going back in to the school. I got back home and we had a lovely evening. We did some work in a literacy workbook and watched a documentary on Orcas.

Autistic Meltdowns are not Tantrums

He asked for a biscuit and I agreed he could have one. He took 4. When I asked him to put 3 back he began a 20 minute meltdown. Kicking, hitting, biting. Screaming he wanted to kill himself. DadiSkilts had to restrain him until he eventually cried himself out. Now I know you are all reading this thinking that it is bad parenting. 6 year olds don’t have tantrums like that. Let me assure you though, these are not like terrible twos tantrums. These are full blown meltdowns. Where stresses build up inside to an unmanageable level and eventually simply explode out. His worst melt down in terms of destruction took place on 19th May 2008 and is detailed in our blog post Sodium Benzoate

Ryan single-handedly trashed his year 2 classroom.

Fizzy Pop Bottle

If you would for a minute indulge me please and think of Ryan as a fizzy bottle of pop. All day he had stresses building in school. Thoughts he can’t filter – SHAKE the bottle a little bit. Lights hurt his eyes – SHAKE the bottle a little bit more. Not understanding the social commands put on him in a school environment – SHAKE that bottle a little bit more. Eventually the teacher or head asked him to do something and that was the equivalent of unscrewing that lid just a little way. A jet of fizz explodes out the sides and this equated to him throwing a chair. He was then excluded, I came to get him - (the lid is quickly tightened to stop the fizz). We go to GP – bottle gets shaken again. Back to school – shaken again. I ask him to put 3 biscuits back and at the same time effectively unscrew and remove the lid of the shaken bottle. You know what happens, fizz volcano, that is a meltdown.

This was a brilliant description that was explained to me when Ryan met his Educational Psychologist for the first time. I’ll introduce you to her later. 

Friday, 30 May 2014

Sodium Benzoate

May 2008

Ryan, now six years old, completely trashed his classroom. This was the biggest most violent episode we have seen to this point. I started a food diary and once again turned my attentions to my suspicions that several food colourings, but particularly the preservative E211 Sodium Benzoate, seem to cause him to be extremely hyperactive. I paid for Ryan to have a full set of allergy tests done on Wednesday 25 June 2008. We found from those that Ryan has many intolerances to food, the worst of which is Gluten, closely followed by Wheat and all Dairy products. Also Oats, Barley, Oranges, and Yeast.

I took this information to my GP as I wanted to request a more detailed assessment for behaviour due to recent developments in school. The GP however did not agree that food intolerances even exist let alone have any impact on behaviour. He did try a refer Ryan for a behaviour assessment but was told they would not see someone as young as Ryan. Unfortunately Ryan trashed his classroom again on Wednesday 11 June and was this time temporarily excluded from school. Over the next few months he had several bouts of illness and by keeping a food diary I was happily convinced that food was indeed a big issue for him and there seemed to be a direct correlation between foods and tantrums. That was however until Thursday 16 October 2008, when he again trashed class room and there was no known trigger. Diet had been excellent and behaviour had been better in school. Little did we know there was worse to come.

Up-turned tables and chairs. Bools & equipment thrown around.

I kept detailed diary entries to help me identify triggers to Ryan's behaviour changes. I listed my findings on a separate page about e-numbers.

Thursday, 29 May 2014

Bang Head Here

There are only two times when I feel stressed: 

Day and Night.

This was the shape of things to come over the next 3 years. I spent more time at the school dealing with Ryan’s inability to cope and increasing violence (he had just turned 4) than I did at home. I was frightened every time the phone rang, dreading what had happened this time and became increasingly embarrassed each time I turned up at the school to find out what he had done this time. We were the 'English family' in a small rural Welsh village.  Everyone knows everyone and everyone talked about everyone.  Ryan had quickly become top gossip.

Dadi Skilts & I slept on different shifts and often in different rooms as Ryan had no need for sleep. Sleep was for the weak. DS & I became a formidable tag team of good cop/bad cop and had to synchronise our cycles to be sure we didn’t PMT at the same time. (Permanently Meltdown Together). We learnt restraint techniques as Ryan was becoming bigger and stronger. To be honest the 3 years, 2005-2008 are pretty much a blur of tears, tantrums and sleep deprivation, from us as well as Ryan. We all simply struggled.

Autism disturbs sleep patterns

Then a new headmaster started at the boys primary school. A young man in his first headship; he cared and understood. He was the first person I had met that didn’t think all Ryan’s problems were down to bad parenting as we had been led to believe thus far. He had a young Uni’ friend who had an interest in and was specialising in young mental health. He asked me if I minded Ryan meeting him. Minded? Why should I mind. Everyone else thought he was a freak show so why not parade him in front of a few more. Seriously though, this was the beginning of a long road to finally discovering that Ryan is in fact Autistic.

Wednesday, 28 May 2014

Croeso i Gymru

Lansteffan Castle, South West Wales, UK

Life changing decision.

2005 was not a good year as they go. In fact it all started in November 2004, the 5th to be exact when DadiSkilts (DS) was rushed to hospital. He had been ill for a good chunk of the preceding year and thought he had discovered a brilliant new diet where you drank litres of water and lost loads of weight (although you had zero energy and slept most of your life away). I assured him women across the world would have sussed that one, millennia ago. I don’t know why, but I encouraged him to get a diabetes test as the local pharmacy were offering free ones.

After copious nagging and most likely just to shut me up, he went; but unfortunately it appeared their test kit was faulty because it gave a stupidly high reading and it was suggested he should visit his GP for a more reliable test.

More nagging and an eventual Doctors visit on that fateful day once again showed a reading so stupidly high that the Dr thought his machine was also broken until DS commented that was exactly what the Pharmacist had said. Dr immediately called an ambulance and sent DS straight to hospital, do not pass go, do not stop to collect your belongings. I had a call from the surgery instructing me to pack a bag for him and meet him at the ward.

After several days in hospital to stabilise his blood numbers and a place in Diabetic history as having the highest numbers ever seen by the GP (36). My hubby returned home a Type 1, Adult onset, Diabetic and had to over-come his fear of needles PDQ.

Roll on January 2005 when he was un-ceremoniously made redundant from his job and spent the next 5 months unemployed and struggling to cope with ‘Shooting-up’ (as he likes to say in public) 4 times a day. I could see depression creeping up on him like Stephen King’s ‘The Mist’. The redundancy money disappeared quicker than a fart in a fan factory and we ended up having to borrow a LOT to survive.  It put a HUGE strain on our marriage as I was obviously not working and........  

Ryan was having issues settling into Playgroup, was diagnosed as asthmatic in January 2005 and began taking pumps. I also began to believe that certain E numbers were triggering behavioural issues in him. We also began having problems on the once nice estate that we lived on, drugs and crime were on the increase and we didn’t much enjoy the, although free, races on the streets, burnt out stolen cars and regular fly-overs from the Police Helicopters. Things were getting so bad, the local council dug up the park opposite our house and created large mounds in an attempt to stop the racing and car dumping. It didn’t work, it just became an off road track instead.

We didn't want our children growing up in this environment and decided it was time for change, a fresh start. We chose to move to the beautiful rural Welsh Amman Valley for a piece of the good life and that’s where the fun really began.

Croeso i Gymru

The boys started in the local Welsh language primary school. We were offered lots of support and help to settle the boys into an alien environment with a totally unfamiliar foreign language, that Ryan still to this day refers to as gobbledygook. Almost immediately Owen simply thrived once again although he did suffer a little bullying for ‘Being English’. Ryan however was classed a ‘Busy child’ (recognise the term?). Can’t sit still, He’s an outdoors child, Brain seems to be very bright and active, but going a a rather faster pace than everyone else; are all terms that have been used to describe Ryan and little did we know the welcome that truly lay ahead as we battled for Ryan's increasing additional needs. 

Tough Decisions Ahead

After Maternity Leave

I finished my statutory maternity leave during 2012 and it was time to return, once again, to the world of work. Ryan enrolled in Private Day Nursery where Owen already attended and positively thrived.

Ryan got on well to begin with, they were pleased that Ryan already had a routine. He went with Owen every day from 8am – 6pm. It wasn't long however that cracks began to show. The term I heard on an almost daily basis was ‘He’s a busy child isn’t he’. This became the most over used phrase known in Ryan’s life over the next 5 years.

Ryan wouldn't settle, wouldn't eat, wouldn't interact with the other children. I began getting more and more calls asking to collect him. I wasn’t enjoying generally not seeing my children for long hours. They were spending longer at Day Care then at home with us. I asked work to be considered for flexi hours, my boss said to me “We dictate your hours, not you. You chose to have children so you choose between work or them”.

Well I didn't need more than a microsecond to make the choice. My letter of resignation went in the following morning and 2 days later the same boss begged me to reconsider and offered me any choice of hours. Too little too late good boy. It was the best, most liberating decision I have made to date.

Sometimes the hardest thing is the right thing to do

Being at home with the boys was wonderful. Why I didn't think of it before I don't know, but I was fortunate to be able to manage financially, although once we had calculated the maths of day care cost compared to my monthly wage we found I was only earning a couple of hundred pounds a month. 

Owen started reception at the local primary school in Sept 2003 and continued to thrive. Ryan (now almost 2) and I joined a local mother and toddler group two afternoons a week. By the following year Ryan started to attend playgroup on his own 2 mornings a week, but once we tried him on 5 mornings a week at the beginning of 2005 (he was 3), things began to fall apart again.

Organic Teddy Bears

GSD, Beagle, JRT dogs

Hi I'm Ryan. 

I used to play Xbox and games like Call of Duty and Minecraft. Other games are available. Now I am a PC gamer. I play Warframe, Terraria and CSGO.

I am not religious, I used to have Asthma, I am hyper-mobile which means I can dislocate my thumb and roll my belly muscles. I can move my diaphragm downwards at least I think that’s what it is.

I remember Nanny and Granddads’ house in Birmingham with the humongous stairs. There were about 5 flights, but I don’t remember my own home. I don’t really remember the 1st house we lived in when we moved to Wales, but I do remember there was a snow day and we played outside. I sort of remember the farm house though. At the second house we moved to in Wales there was a pig sty and a little cubby hole in the middle of the stairs.

I was probably the worst behaved child in the entire school. I only really remember one of the teachers with many names, Evil Edna, The Soul Taker, Mrs Reaper. I trashed the year 2 class room. I threw a chair at a teacher, she wasn't the best. Top tip - Don’t work in a school if you hate children. There was a shop across the road from the school and a park with a field behind it and a pub to the left. I used to run away from school and hide up in the tree.

Living with autism is imaginative. Not different from any other human just a unique mind set. 

Autism Word Cloud / Wordle

Animals are sometimes your best friends; they are friendly, cuddle with you, cute & soft, like organic teddy bears. Sometimes though, they are your worst friends when they scratch on your door and wake you up. When they are purring or meowing or barking at 6 o’clock in the morning.

I don’t have much of a social life; three quarters of it is in my pocket (my phone), the rest of it’s at school. I went to a different school in year 3, it was okay. Some of the teachers didn’t really like me, there was one teacher there that I remembered the most. Mr Jones my year 4 & 6 teacher. He may have been mean but he taught me a lot of skills I still use today, how to tie a tie; how to deal with change; how to use a pencil properly. I also went to War Hammer 40,000 club and I enjoyed it. It was just a board game but really fun.

Secondary school has lots of mean teachers but Mr Johnson is the funniest, coolest and   shows his nice side more than his mean. I give school overall 3 and a half stars out of 5.

Life of Ryan

Once upon a Saturday morning. 

Single Daisy Flower

10 November 2001, only hours after leaving my job on the Friday evening to start my maternity leave, I gave birth to my second son. For the previous nine months I had convinced myself that I was having a girl. I already had a wonderful son Owen and a little girl would complete our small family perfectly. I didn't even have a boy's name picked, so when the midwife congratulated my disgustingly easily labour and invited me to say hello to my beautiful new son my first reaction was total shock and my first words were (yes I am almost embarrassed to say) "I didn't order a boy, I am having a girl, her name is Megan. Can you send him back?" Of course this shock only lasted a matter of seconds for the moment the midwife placed him in my arms I was hooked to this utterly gorgeous bundle of tiny awesomeness.

I can not pin-point the day or time exactly when I started to suspect that things were slightly a-miss, but very early on in Ryan's life I began to realise he was different somehow. Something was not quite right. I started to make notes in his red 'Personal Child Health Record' (PCHR) that is every new mum's Bible. Ryan's Development 'Firsts': Lifts head clear of ground - 16 weeks. Rolls over - 5 1/2 months. Sits with support - 5 1/2 months. Sits alone - 7 months. Crawled - 7 months. Stands holding on - 8 1/2 months. Walks holding on - 9 1/2 months. Walking confidently - 13 months.

All seems spot on so far, I didn't present any worries at his 6-9 month check although the health visitor did comment he took a long time to get through the hearing test. At his 2 year review I was worried! I commented in his PCHR "Very violent episodes - kicking and hitting, not during tantrum. Totally unprovoked. He seemed also to have his own little language. I can understand him, just, but no-one else could, not even his dad. The advice I was given on this occasion was to not worry, he is probably just a late developer. 

By his 3 and a half year check I was really concerned. He was very clumsy, had several falls, cuts, hospital visits, was (and still is) a very sickly child, not potty trained and still not speaking. Wouldn't speak at all to health visitor who again assured me he was just a late developer. His height and weight were consistently below average but I was told (yes, actually told) to stop being neurotic and attention seeking.

Real Mothers Quote

I was called neurotic and attention seeking on many more occasions to come too. 

This is our story of Ryan's journey of Autism and ultimately Cancer. Welcome to the ride of our lives.