More Stories - Life with TS

The information provided below is all based on real experiences and emotions. I apologise in advance if it is hard to understand, but it is they way I perceived my world at that time.

I am 17 years old and amongst other labels I have been given ‘AD/HD’.

The other labels I have acquired are Mild Autism and Semantic Pragmatic Disorder.

Why do I use the phrase of label? Well that is the way some parts of society view me although surely I am a person first not just a label for society’s convenience.

I am not what you might perceive as the stereotype of an AD/HDer, I am not a 5 year old boy who is ‘hyped up on orange juice’, I am not in prison due to robbing yet another house just to fund a ‘smack habit’, I am not a teenage mum. What I am today, is partly due to damn hard work and mainly due to the way I was responded to when I was younger.

The occurrences and experiences I encountered have helped mould me into the ‘fighter’ that I now see myself as being.

Let me take this opportunity to tell you a bit about my past, just to give you a brief idea as to what I have experienced. I make no apologies if some of what you are going to read might upset you.

Even from a young age I was consciously aware of how ‘evil, ignorant and screwed up’ our so-called society can be.

Within primary school I was singled out by both my fellow peers and by teachers. With the pupils it was semi excusable, because they were young and to begin with knew no better. But what gives a teacher who is a respected member of society the right to think they can mess up a young, impressionable child’s mind? There is no excuse, my parents entrusted them to keep me safe and out of harm between the hours of 9 and 3 but I was far from safe.

I am going to now tell you about one incident of many where I was subjected to torture. I was 9 years old and had been bullied fairly regularly for about 3 years.

One evening whilst my mum was out I decided to tell my dad about what had been going on, he telephoned the parents of the bullies in the hope that if they told them off it might stop or subside, but this didn’t have the desired effect. The next day in school, during assembly I was made to stand on the stage whilst they came up one by one, shook my hand and reluctantly said ‘sorry’. They clearly weren’t sorry because at playtime that day the same children came over to me and told me that they were given a pack of sweets for saying sorry. Needless to say they carried on, the bullying took its toll and as it did I became increasingly more down and depressed, my depression took its toll emotionally, physically, mentally and psychologically. I begun to do myself harm as a release of feelings, which I could not express in other ways. At High School, I hoped I could avoid my tormentors, as it was a larger building. I thought I would have more places to hide away from them. This had no affect as the bullying begun again and this time there were more of them.

I would respond to the treatment I was given and then end up being the one in trouble. After school most young people would go swimming as a hobby, my hobby would be to see how many detentions I could achieve in one week! It was actually funny because in each detention we were given a piece of A4 paper with questions, which we had to answer. The questions were always the same!

Why are you in detention? Do your parents know you are in detention? What advise would you give yourself so you don’t get another detention?

My responses were always the same. I am in detention because school hates me and is out to get me, if I am not at home by 4 o’clock my mum realises I am in detention, the detention was not my fault as I act the fool and then regret the consequences of my initial actions.

I think to be honest that the teachers were fed up of seeing me there as well!

What else occurred when I was in school? Well the following I think are short amusing stories, which will inform you of the resourcefulness of AD/HDers!

Picture this, a science lesson I am 15 years old and in the bottom set. We are asked to copy the work down from the board, I repeatedly asked for some paper without much luck so I decided to use my initiative. I got a compass out of my pencil case and carved the work into the brand new wooden desk. I called my teacher over to tell him I had finished, he asked to see my work, I showed him he said he couldn’t read it so I got a marker out and coloured in the gaps!

On a different occasion, a month before I was diagnosed as AD/HD I managed to get myself banned from Maths GCSE lessons for 18 months for simply informing the teacher of my rights! He was refusing to explain the work to me in a way I understood so I put up my hand and said ‘You are paid by the school, the school are paid by the government my parents pay the government in tax therefore indirectly my parents are paying your wages! Before he had time to send me out I walked out and slammed the door. After that, I had no Maths GCSE lessons for 18 months!

In March 1998, I decided to prepare an information folder about AD/HD for my subject teachers as a way for them to understand me and my reasoning a bit better. My teachers all bar one were appreciative, the one teacher who wasn’t, was my head of year. She called me out of a lesson and demanded to know what I thought I was doing ‘educating’ the teachers. She yelled at me ‘her job is teach, and mine is to learn’. To shorten this story I ended up in yet another detention!

So what would you expect the outcome of my school story to be? Would you expect me to have achieved no or very few GCSE results, and then would you expect me to gain grades F or G? Would you expect me to have even been entered for the exams?

I will put you out of your misery and shock you, when I tell you that I left school last summer (1999) and surprised everyone when I got the exam results of 1xA, 2xB, 2xC, 2xD and 2xE! When I phoned my mum from school she said she wouldn’t believe it until she saw it written in black and white! I showed my head of year who’s response was ‘I’ve just lost £10!’ I was so shocked, I kept asking people to read me the results, I was convinced and still am at times that I was given the wrong result slip.

So what am I doing now with my life? Well I am almost finished with my first year of college, where I am studying an Advanced GNVQ in Health and Social Care, with the long-term goals and aims to become a social worker! - I figured that if I am unable to beat the buggers I might as well join them! I would also like to specialise in AD/HD and associated difficulties. My other reasons for wanting to do this are because I don’t want to sit back and know that other young people are having there lives messed up and their emotions thrown around by people who should know better.

I am also the founder of a web site called Y.AD/HD.PM which means Young AD/HD People Matter! I launched the site on the 10th of February 2000, and thought that if I help 10 people realise that they are not on there own with AD/HD then it would be worth while. After a quick glance at my site a few minutes ago the hit counter is approaching 3700! Please realise that the counter does not register my visits! So, it is not a case of I have been pressing ‘refresh’

Within my site, I have written which explore my emotions and experiences, there is a section devoted to a translation of what AD/HD is in easy to understand English, I have included a section on the positive and negative of being AD/HD within school and much more. The site has also won numerous awards ranging from ‘The Golden Web Award 2000 – 2001’, to gaining a ‘Family Friendly Status Award’.

I receive emails continuously from visitors to my site, who regard me as ‘ a hero, a great person, a person with so much to give, a fighter, a survivor etc’

I do not personally see myself like as those things. The years of bullying I encountered ‘crushed’ my confidence and it is now slowly coming back and stabilising.

At times I still have a ‘brick wall’ around myself, I think that this is because I am frightened of letting people in too close in case they hurt me.

When people complement me for the good and positive I do I have immense difficulties in believing that they have no hidden agenda or motives for being so nice to me, I think that this is because I subconsciously see the ‘what might be’ in occurrences. This is a habit and pattern, which I am attempting to break free from.

What else am I like? Or what else do I do? Well I am a Leeds United fan and have been a season ticket holder for several years. I find going to matches and yelling is a great release of anger as if I am shouting at a match I can pretend the player I am yelling at is someone or something that has upset me in the past!

I also volunteer and help out at a local youth centre with a group of 9 –11 year olds. Whilst there I do whatever! A few weeks ago we had a party and the youngsters paid to throw ‘wet sponges’ at me. It was amazing seeing their faces when they realised I was not bothered about how wet I was rapidly becoming! I had more fun and felt a greater level of satisfaction when I saw how happy and pleased they were.

I think that is all I have to report on apart from to ask you a few questions and to make a few suggestions to you.

The next time your AD/HDer, is what society regards as ‘playing the fool’ please stop for a minute and think and ask yourself why are they behaving in such a way? When you are teaching a class and a student is letting on they are ok with the work, spend 5 minutes and just make sure they fully grasp what is expected of or from them, a tip which I gave to one of my old teachers was ‘expect nothing from me and therefore whatever you get me to produce is a bonus.’ AD/HD is a gift and should be used as an ADDvantage instead of focusing on the negative.

As I switch on my mobile phone every morning, I receive the message ‘If I thought first, my second action wouldn’t be wrong’.

Please love, care, respect and attempt to understand AD/HDers, we have far too many enemies when in fact all we want is friends.

I will conclude with the thought that ‘Ignorance is curable, where as AD/HD is a chemical imbalance’. If a diabetic requires sugar they are given it, if an Asthmatic requires an inhaler they take it, AD/HDers want and long for understanding. Please give it.

Dot’s Story

Hi everyone, l thought l would let you know of some of the things l have come across in the past year. First my family make up

We have 3 sons all grown and getting on with their own lives. The youngest of them S aged 27 was diagnosed with ADD 4 yrs ago and is now at university. We have a son 19 with aspergers, he was fostered but is now staying with us as a boarder. We also have a daughter who is now 17 and has mild CP plus oral dyspraxia. These three merit stories in their own right but l’ll just tell you about my youngest, T who we are still trying to understand

T has learning difficulties, he had an abused early life and was placed with different carers ending up in a children’s home till he came to us 21/2 yrs ago. he is now 7yrs. He had lots of little idiosyncrasies but that was just him. We cared for him for 18 month’s with no problem. He was wearing but so are all kids.

Just a year ago this June, the month he was adopted we bought him a sand set from Toys R Us the spade hadn’t got the usual triangle at the end of the handle and T would kneel flicking the spade end for ages. Little did we know what was to come. He suddenly became hyper, and l mean suddenly. He was in and out of the garden in seconds he would repeat the same thing over and over and repeat behaviours. He trashed his bedroom ripping all the wallpaper off and throwing all he could get his hands on, including clothes, on top of the wardrobe. (This has since been resolved by installing the floor to ceiling sliding doors and removing everything else)

T’s main thing is shoes, he has always smelled peoples shoes but now he was flicking them too, l seem to be able to cope with most things but that. The constant rumbling of a shoe on a table turns my brain to jelly. (Apparently his mother was a shoe smeller too)

He will scratch his head and smell his fingers, he smells the car lights when he gets out of the car. The other day he pulled the waist of his joggers out, put his hand in there then smelled and licked his fingers, then he made a few strange gestures making an AAHH aahh noise at the same time. Then continued flicking. He wears a nappy at night and every morning he is wet where he has had his hand inside, l know he is touching his penis because the skin was back on it one day when l changed him.

Going back to last summer. We took him on a few trips to the seaside where he completely lost it, he screamed, bit himself (and me when l tried to stop him ). He was snarling and snapping it was very scary. My son S visited one day and told me he definitely needed Ritalin, l said no chance at first but he told me to go and see the paediatrician about it. T was given the Ritalin which has curbed the manic behaviour. My son say’s Ritalin doesn’t drug you it just helps you to focus yourself. l realised there was a sensory problem too and looked everywhere on the web typing in “sensory”, it just came back with Viagra type stuff. Then one day l was looking up something to do with my daughter, at the bottom of the page was the word sensory. l clicked on and there was SID. Sensory Integration Dysfunction, l read ton’s of stuff and decided yes this is him. l found out that on those day’s to the seaside his senses had been overloaded and he just blew cause he couldn’t cope. He has also bitten kids at school, looking back it was because another child was either crying or having a tantrum which made him high. The teacher sat him on the naughty chair on these occasions but he bit himself and put his tee shirt in his mouth and tore it like tissue. “The Out Of Sync Child” book is recommended so l bought one for myself and the school, the community nurse got one too. All bought through Amazon.

This Easter T started spitting, he had also started to run upstairs in a morning to close the bathroom door, soon he wanted everything in his rightful place. That’s when l came to the tourette site, yes l do see him there and am busy trying to get a diagnosis but l think some of you would benefit greatly from looking at the SID sites. As l look around different sites l can see all my kids in there to some degree. Tourette’s has complicated symptoms. ADHD, autism, sensory issues all need to be understood individually. l feel the sensory stuff is the most important cause although our kids are compulsive, it’s the sensory things that drive them to do the things they do.

T loves the tumble dryer, he used to sit in front of it smelling it all over and putting his ear to it to feel the vibrations (low sensory behaviour). Unknown to me he was going in the laundry room and leaving it switched which resulted in it burning itself out. The new dryer has two buttons to press so he can’t turn it on. It also has a buzzer that goes off when it’s cooling. One day T was busy having a good smell when the buzzer went off. he put his hands over his ears and ran off. He is scared of it now which means he is showing signs of being the opposite of low sensory so could give people the wrong idea. You have to be sure people observing them get the right picture .

Low sensory means he searches for stimulation. If l stroke Ts legs he goes into a trance, l have read that this too has implications. Although it appears to calm him it stimulates him so much that it can stop him going to sleep for hours. It’s all so very complicated. T jumps up and down and flaps his hands, he falls over his own shadow, all signs of SID. But where do the vocal tics come from?. He hums all the time he clicks his tongue, he stutters sometimes and constantly repeats things over and over. When T wants a sweet he will either say “ you can have a sweet if you are a good boy” or “how are you. Simple enough, l was bowled over last week to read that “How are you” is a tic !!!! he doesn’t just say it to us he can say it as he is walking around and will even reply “I’m fine how are you”??

Some of you may see your child in T, if so please get in touch it’s hard enough trying to make sense of all this. Teachers, community nurse, etc, have never heard of SID and although have heard of tourette know nothing about it. l’m trying to educate myself and others too. l prefer usually to read of others behaviour but just wanted to mention the SID hoping it would help someone. Please get in touch if you want to chat or can offer some help.