2014 Review

I had such an incredible 2013, filled with amazing experiences I never imagined I would have. It was always going to be a tough one to follow, but I could never have foreseen how drastically different my 2014 would be. If 2013 is to be described as incredible, well 2014 can only be described as horrific and in this present moment it truly feels as though it has been one of the worst and most painful years of my life....and I have had some pretty tough years! 

2014 has just been one big battle after another, fire fighting problems but never stemming the source or addressing prevention methods. 2013's review focused a lot on all the things I had achieved in sport and in the world of autism. I cannot sit here and write a bleak account on all the failings and pain of this year, in spite of all that I do have some good memories and achievements to reflect upon so this review is completely personal.

Ankle Injury March 2014

I have learnt a lot this year, some good things, some bad, but also a lot about myself. I always knew that I was fighter and that I was a strong person but even so I'm almost surprised that I am still here, still doing this. If you know me you might think you know what I have been through this year or that you have an idea. You don't and it is likely you never will. You can never know what it is like to be told by every mental health service, the specialist team for ADHD & Asperger's and your GP that they cannot help you at your lowest point, when you need them the most. Nor the irony that it was these very services that brought you to this point in the first place. I've had it all - anxiety, stress, depression, a diagnosis of another neurodevelopmental disorder, dealing with longstanding painful issues, financial difficulties, social care assessments, PIP assessments, increased meltdowns and a severe injury. I don't need to elaborate on these, a fair amount of it has been covered in the blog posts I did manage this year. 

I felt as though I hadn't done a lot this year. Sporting wise I was out of action for 4 months and 9 months on from the injury the ankle still isn't right and I am only just starting to rediscover my form as a fighter. I still won a couple of British titles and a silver and bronze at the World Championships which I hadn't been sure I would be able to compete at following both my injury and also the difficulties I had been experiencing with my anxiety. I had explosive meltdowns nearly everyday while away at the World Championships, in the arena, in public areas, with my team and in our hotel room. I was fortunate to be able to attend this competition with the assistance of my sponsors SEN Magazine and Tough Furniture Ltd.

With the girls from my team at BCKA

Not being able to train and compete to the best of my ability hurt a lot, it hurt a lot having to have all the time off with the injury. I struggled to be at training and cope with it because what I was capable of doing was different to what I was used to. But even though I wasn't coping myself I was still able to help my team mates. I didn't realise how much so until our Presentation Night when many of them and their parents approached me to thank me for helping to improve their fighting, for my support, advice and help when they had been struggling to cope themselves. I'm proud of myself for being able to and choosing to make a difference to other people even when I am struggling myself. 

In the autism world I still managed to do some things. I went to Anna Kennedy Online's Autism's Got Talent, spoke at the Autism Show, spoke at a conference on disability for the Job Centre, spoke at a conference for speech and language therapists, I supported Wear It For Autism and Artists of Autism where I had my own wall about my achievements. My video for the In Good Company project was launched on World Autism Awareness Day, I did a radio interview for BBC Northampton and interviews for Vice Fightland and CNN about achieving in my sport with autism. I also followed up my Asperger's Awareness comic with a comic about Asperger's & Schools. I did assemblies at Baston House School and Green Oaks Primary, as well as being a special guest and keynote speaker at Easton & Otley College prize giving ceremony. I was also honoured by being asked to become a Fighter Ambassador for Fighting For Autism.

2014 was also a year where I got my puppy Oscar. Oscar is an awesome dog. He has grown up alongside what has been a tumultuous year for me but he is so intelligent he has learnt a lot from this. Oscar is a great help to me especially as he becomes more mature and calm. He understands when I need him to be there and how he can help when I am stressed or in meltdown. We have become inseparable and I couldn't ask for a better dog.

I also had two children dress up as me for Sport Relief as their sports hero. A young girl on the autism spectrum called Cherish who I met last year and my little friend Izzy. To have this happen is truly humbling and a great feeling to know that other people look up to me like that.

Eventually I hope that I can put all the negative feelings and events behind me and remember 2014 for all these amazing things that happened but also as the year that I was blessed with such special friends - Owen, Izzy, Mick & Vicky. They have helped me out looking after Oscar for me while I was fighting in competitions and have all contributed something special to my year. Izzy tells me how awesome I am and the first time I met her she decorated a biscuit for me. Izzy always gives me big hugs and is always making things to give me which I treasure. She is such a sweet, kind and generous little girl who desperately wants to make others happy. I have all the time in the world for Izzy and have loved helping with her homework projects this year. Owen and I are both on the autism spectrum and becoming his friend has been one of the most rewarding experiences I have ever had. A lot of people don't get him but Owen is an amazing kid you just need to take the time to really see him, there is so much going on with him - he is so intelligent, so caring and has no idea whatsoever how amazing he is. My friendship with Owen has helped me to not feel so different and I hope that I can help him find his way through life in whatever way he needs me to and show him that he can succeed. We have done so many things together this year - painting, film days, swimming, light saber battles, trampolining, kickboxing, football and we have our own special handshake. Owen also did a charity bike ride for Anna Kennedy Online and in preparation we made an awesome promo video. I was very proud of Owen.

Me and Izzy on my birthday

Me and Owen with our painting

Mick and Vicky have helped me so much this year, they have both taken me to appointments and accept me as I am which I appreciate so much. Vicky was helping me before she even knew me and she still didn't really know me that well but gave me her time and support, not many people would do what she has done for someone they didn't know that well. Some people might say she is crazy but I prefer to recognise that she is just a very special person. As I said I have had to fight battle after battle this year and it has made a huge difference to me to see Vicky there helping me to fight, being my voice when needed and helping me to have and find my own voice. Knowing that there are people like Vicky and Mick around helps me to keep going and I'd like to thank them for being my friends, doing what they can to be there for me and making me feel so valued. Thank you for bringing some good to my 2014.

Anti Bullying Week 2014

Last year I wrote a shortpiece for Anti Bullying Week and this year I have been asked to do the same. I have been going through a hard time recently and due to this have been really struggling, so I didn't think it would be possible to follow up on this. But due to my own experiences this is something I feel strongly about and I feel that there is maybe enough energy in me to squeeze something out and hopefully it will be something more meaningful coming from the place I am at currently.

In 2013 I concentrated on my own experiences of bullying interspersed with a message about different forms of bullying and that if you are being bullied telling someone is the right thing to do. So this time I want to take a different approach. I don't want you to feel sorry for me, I don't want you to read this and think 'ah that was a good post' and then just move on, I want you to read this and not just be mindful or aware but to make a difference. And we can all make a difference, to somebody...believe me.

I often talk about how I grew up and felt lonely, misunderstood and left out. I share how I struggled to join in and interact with other people and how that made me feel different which in turn made me feel not good enough. I talk about how those feelings I already had were reinforced and made stronger by how I was viewed and subsequently treated by other people in my life. When I speak or write about these I give the impression that these are all things of the past, that it isn't like that anymore and everything now is great. But the truth is it isn't.

Admittedly a lot has changed. I have grown and I stand up for myself if someone treats me in a way I don't like. But my experiences are woven into me, they sneak into my interpretations of a scenario and influence how I react. And I am still a person who has autism. I still struggle to relate to, communicate and interact with others. I still exhibit "different" behaviours and react differently than others might and consequently still see those "looks". Everyday is still a battle, not to get through but to get others to "see" me and to understand why they mostly do not want to. It often feels like a battle that cannot be won, trying to be what I am not to fit in does not work or make me happy but I don't get very far just as me.

But in spite of this, just being me with the people who are in my life and who do "see" me is the most wonderful thing ever. After all my experiences acceptance truly is one of the most amazing things I have felt and I am lucky to know that. Although we all have the right to acceptance and to be loved for the very person we are, many are not. Unfortunately it seems that there is a big problem in society in that we are not taught to embrace difference but are actually conditioned to be fearful of it.

I often wish vehemently that I was different, that I was more like everybody else and within the context of this piece that evokes deep feelings of sadness inside me. That somebody who does their best to tell and make others feel that it is ok to be who they are does not feel the same way about themselves. That deep down after all the declarations of "I am who I am", I still feel that that is not good enough. Maybe this is the voice of my current struggles and the fight I am in right now but even so I don't want to think these things anymore. I don't want to think it is wrong to be me, I don't want to feel that being different makes me come up lacking something - I don't want to keep wishing I didn't have autism or ADHD just because I think that if I didn't people would like me more or want to spend more time with me and would ultimately accept me. These thoughts are a waste of time and simply not true.

During Anti Bullying Week I am sure there will be a lot of focus on the act of bullying, the impact of bullying and how to deal with bullying. So I would like to remind you now about the power you hold, the power of your words, of your actions. Not just in standing against bullying or to deter you from potentially being a bully but also in how you can make someone feel valued, accepted and worthwhile. Reach out to those you may usually pass over and include them, however painful it may be to you it is likely to be a lot less painful than the feeling of exclusion. Embrace difference - don't be fearful of it, different minds are responsible for much of the things you take for granted today. Most importantly spread and embody love and acceptance, we find ourselves in a time where these things are called for more than ever. Always be the difference.

"The surest way to corrupt a youth is to instruct him to hold in higher esteem those who think alike than those who think differently." Friedrich Nietzsche

I'm Off To The World Championships

Most people might probably assume that in my sport fighting for a world title is just literally getting on the mat and fighting at the tournament. Others who are involved or give it a little more consideration might probably determine that the fight starts in training - in getting fit, sharpening techniques, eating the right food, physically preparing yourself to do it , mentally preparing yourself. They might be right but my world title fight has been going on a lot longer than that. 

It's no secret that I have had a really tough year, my lack of usual communication on social media and blogs are huge clues. But this post isn't to tell you about that nor is it to outline all the things that are an obstacle. Some might often wonder why I am so open about my difficulties but the reason is that if I don't speak up about them then how will anyone know? Why should people know? Because there are lots of people in the world like me but who might struggle to speak up when they need to - I speak up so they see how to or possibly don't need to because a little consideration of another's differences can go a long long way. 

The reason for this post is so that I can say thank you to those who have helped me get to this point. Who have supported me to get through each struggle life has thrown at me this year. There have been so many points this year where I thought I would not be able to attend for various reasons even up to recently, some of these were practical reasons such as money, others have been internal battles with my anxiety levels. Nevertheless I am here and as ready as I can be so here are my shout outs:

First off my sponsors - SEN Magazine and Tough Furniture Ltd. I would not be competing without these. I have been incredibly lucky to find sponsors, funding competitions has always been difficult for me as I require a lot of support to travel and cope with being away which means paying for another person to accompany me. That creates a lot of stress when it is already a stretch to cover your own costs. So thank you to SEN Magazine and Tough Furniture Ltd for your contribution, also thank you to everybody who donated to my fund page and my parents for their support. Every contribution has helped so much and I am really grateful.

Next I want to thank my team at BCKA and my coach Alex Barrowman. I have not always been easy to have around this year. It might have been confusing to see my change in behaviour. I couldn't get to every training session. There has been so much happening for me outside of training and a big injury to deal with, my anxiety levels and stress have been intense and escalated with matching behaviour. I haven't always engaged with you. I know it can seem strange and difficult to understand so thank you for your patience with me. Thank you Alex for helping to make things as easy as possible for me at training and making sure I am safe during meltdown. 

Thank you to Christian Baker for kindly giving me your time over the last two weeks. Chris is a talented hypnotherapist and performance coach. With all the ongoing stresses in my life currently regarding my ADHD diagnosis and treatment and getting more support in place for autism, my anxiety and stress have been at an all time high. I have difficulty switching my mind to what it needs to focus on and Chris has helped me with strategies to manage my anxiety. Through this year and all the stress I have forgotten who I am and Chris has gone some way in helping me to remember and feel like myself again. I feel as though Chris gets me where specialists seem to fail.

I also suffered a severe injury earlier this year which put me out of full training and sparring for four months. In order to get myself ready physically for this event and rehab my ankle effectively I have had the support of Sharon Morrow of New Dimensions Fitness. Sharon has had to endure my mood swings, frustration and reluctance to complete exercises but we have got there as much as possible. I do not have the concentration to do exercises on my own currently so her help has been invaluable in getting the ankle as good as it can be. Sharon has been very good to me and I am really grateful for all her support with my weight loss too. I am also grateful to all the medical professionals who have helped with my ankle rehab (except the NHS physio who just discharged me with no instruction) there are too many to list.

Coming to the end now where it is more personal I guess. Adam and Oscar. Unless you live with a person who has autism and ADHD you will not understand what it is like for Adam. My behaviour has been erratic, my moods have been difficult to understand and decipher. Half of the time he's not sure what's going on, the other half he has no idea. If I decide something has to be done then it has to be done. My anxiety has been so intense and my behaviour so unpredictable that Adam has had to take me to every training session, he is tired and stressed and probably at breaking point a lot but he still does it. If you are a parent you don't have a lot of choice when it comes to supporting your child but as a partner there is choice and that is what makes Adam special. Thank you Adam for helping me get to training, helping me plan out going away, helping me communicate what I need and supporting me through the processes. I would not be without my Oscar now, he has been witness to a lot of anxiety, meltdowns and volatile behaviour. He has begun to understand it now and he really does look after me. Having Oscar around makes me feel calm and loved. He is the best puppy I could ever wish for.

Lastly I want to thank my friend Vicky. I am so lucky to have a friend like you. You have supported me through everything this year and made sure people listen. You still think it is nothing but to me it could never be nothing. Thank you for everything. Thank you for your help this week with my medical appointments, for making sure I got my ankle looked at and explaining and supporting me through the process, for the lengths you went to in arranging the assistance and support I need at the airport and that I understood what would happen. Thank you for your support with my social worker, with chasing up the ADHD team, chasing up the doctors, with the ADHD diagnosis, for listening to me and explaining things that I find confusing. Thank you for looking after Oscar when I am away, it makes me feel more relaxed knowing that he will get lots of cuddles and have lots of fun with your family. There is so much more to add but more than I could possibly fit. Mostly though thank you for being you and for being my friend.

I travel to the World Championships in the early hours of tomorrow morning. Who knows what will happen there but I have fought so hard to get to this point now that regardless of that I am a winner. After the year I have had to just be standing means I have won. I am a fighter and I know what it takes to be a champion - I never give up and I will give nothing less than everything I have.

Links

SEN Magazine - www.senmagazine.co.uk

Tough Furniture - www.toughfurniture.com

BCKA - www.bckakickboxing.com

Christian Baker - www.christianbaker.net

New Dimensions Fitness - www.newdimensionsfitness.co.uk

The Follow Up

I am writing this post in follow up to my previous blog post "Services for people with autism and ADHD are not good enough", I had always intended to write a follow up and did start this a week ago but was so angry that I just had to stop. 

My previous post outlined the way things had been dealt with following my diagnosis of ADHD and after much pushing and pushing things have moved on a little although I still do not know what exactly happens and how long it all kind of takes. You will understand this is quite a big thing if you have an understanding of autism. 

When I refer to stress and anxiety sometimes it is unclear what I mean, I guess stress and anxiety, like depression, are words that have been devalued to an extent or at very least are not strong enough to describe what I feel. My stress and anxiety are constantly pretty high. Everything I enjoy and want to do causes me stress. I'm anxious everyday but presently it is like I am walking along a narrow path on the edge of a cliff, constantly ready to tip over. I am explosive. It was only last week I had a meltdown because my phone wouldn't charge, it totally came out of nowhere and there was no stopping it. By meltdown I don't just mean an "arrrgggghhhh" moment, I mean break things, throw things, out of control. And as an adult I usually cope with stuff like that fine, it is not something which would usually result in that type of behaviour but my anxiety and stress are so high that it does right now. I am currently living life on the edge with fear and worry that I could lose it at any time and the biggest contributory factor to my life being like this is how the follow up support from my ADHD diagnosis has been handled.

There is a lot to cover here and I'm not covering this just to moan, I will be taking appropriate action, nor am I covering it to show people "how difficult my life is" as I know we all have our own significant challenges, autism, ADHD or not. But it is important that I do this and the reason behind that I will make clear.

I mentioned in my last blog post that I was diagnosed with ADHD on the 7th July. I was given great feedback and explanation on why a diagnosis had been made and was applicable. I was given timescales for follow up sessions to help me understand and manage my condition. I was told certain things would happen. These things did not happen, the timescales have all passed and I am still waiting, totally unsure of what is going on. With services like these I do expect a wait, it is not ideal, at this stage it can't be ideal - I don't expect perfection. But I do expect professionals to do what they say will, when they say they will. That is important to me. I was diagnosed 7th July but will not have any follow up until mid October - 3 months following diagnosis and I have been struggling significantly for a very long time. I have reached points where I feel there is no hope, no point and that things will never change. Where I feel that I just don't matter. I have been incredibly vulnerable and empty, just taking up space from one day to the next. Feeling useless. And that is a horrible feeling. 

It is frustrating waiting so long. It is not good enough to be given a diagnosis and then left for 3 months - those days, weeks and months following such a diagnosis are a very confusing and difficult time where a range of emotions are felt. Or at least it has been for me. But it is not that wait that has been the biggest issue for me, I can cope with waiting when I know how long there is to wait. At this stage now waiting until October is going to be difficult because I have become so fixated on this appointment due to the anxiety that has come about expecting it to be sooner and not knowing when it would be. The biggest issue has been this - when I was diagnosed and the possibility of medication was suggested my concern was, as it is with practically all medications, how would it affect my fighting and sport? Would it have an impact and I do not want to take a risk and start new medications before big competitions, they are too important to me, I have sponsors and if I am not able to give my best and enjoy my training and competitions it significantly affects my well being. 

My training and competing to me have always been necessary in managing my frustration and have always been more useful to me than medication. When I was diagnosed it was made clear to the psychologist that I would be training for the world championships from September, to compete in November with a small gap before training for the next international competition started in January. We asked specifically if referral could be made straight away so the stress of waiting for the appointment would be lessened and it would be clear what happens before I start training and needing to focus. We were assured this could happen and would happen, that it would be the next couple of weeks following the diagnosis. But this has turned into months. The anxiety of expecting and waiting for a letter everyday that would give you an appointment to discuss medication that it has taken you a lot to agree to be open to has been immeasurable. I can't cope with the simple stuff anymore, I struggle to attend my training sessions alone and I have missed a few training sessions due to meltdowns and severe anxiety. I have not slept before 4am in over a week and I am supposed to be training for and focusing on winning a world title. I will be fighting for a world title a couple of weeks after this appointment for medication that I am incredibly stressed and anxious about happens and after making it very clear I did not want to be in that situation it is making me feel so angry that it is exactly the situation I now have to cope with.

But that's not all. My stress and anxiety got so bad that I went to see my GP, where I found out that my GP (as of 28th August) had no knowledge of my ADHD diagnosis. I don't think they were even aware I had been referred for diagnosis. They were also not aware of significant situations which had occurred recently due to my anxiety and level of stress. At a time when I have been at my most vulnerable, my GP has been completely in the dark and I have been unsupported. How does this happen? My GP was just as shocked and appalled by this as I was and has since spent time chasing up and trying to find out from all the involved services just what is going on. But most importantly because my GP was unaware of what was going on they could not help me. 

What more could there be? It almost seems how much can a person be let down and failed? Just a few weeks before the psychologist I see for support with Aspergers was due to leave, they decide it actually might be a good idea to tell me! And right up until our final appointment (8th Sept) it still wasn't clear what would happen after she left. There is still so much work to be done and I feel as though realistically nothing has improved since we started working together. No options on what could happen next were presented, how can I make a decision if I don't know what is on offer? 

The whole service has left me feeling completely baffled. These are the people who are supposed to understand autism and be able to support me but they have made me feel alone, added to my stress and anxiety and essentially made life worse. There is still so much uncertainty around what happens next with the work I was doing with the psychologist and following the ADHD diagnosis. I have very nearly given up and all I want is something very simple, just to live my life as fully as possible. I want the basics. I want to cope with day to day life better.

My experiences with services concern me. I have had awful experiences with mental health services, employment services and I also now have bad experiences with services which specialise in autism and ADHD. Am I that difficult to help or that complex? I'm not sure that I am. These experiences feel awful to me, they have made me think and feel things that no service should make a person feel. And I know I am not the only one. This is why I must share these experiences. I have got to where I am through sheer grit and determination, I have dragged myself through things that many wouldn't and I have achieved amazing things. I am lucky I could do that, for whatever reason I have managed to do it the one reason that is missing is because I was supported adequately by services. I was diagnosed with Aspergers in 2010 and to this date have had no official support with strategies for managing and minimising the associated challenges. I have had to create my own. 

Through social media it is easier now to see more of what others go through and I see a lot everyday of people going through things similar to myself. I have friends of all ages who experience this stuff too - so just what is going on? It tears me up and breaks me to see what my friends go through. To see them unsupported like me, to see them struggle and suffer like me, to see the impact it has on them. The lack of understanding, the lack of support, the insufficient and inadequate service provision is just not good enough - it must change. There must be more passion to help those like myself, these services aren't even getting the basics right - they aren't getting the structure, environments or the communication right, they aren't defining processes, or making it easier for us to process information. The way they run their services seems to just make it harder for them to provide a better service. 

The way things are is damaging. For people of my age it is bad, it is frustrating and difficult to change. But for children and younger people it is damaging - they have a chance that is being reduced and removed by those that are supposed to support them. In some of my blogs I have spoken about how I underachieved at school and didn't reach my potential because I was undiagnosed and unsupported. But now I see that there are those with a diagnosis that are unsupported, given up on and who through having a diagnosis are made to feel even more different and through the negative experiences they have naturally conclude that means they are not good enough. I see so many negative attitudes about helping those less fortunate than ourselves unless it involves tipping a bucket of ice over your head and donating a few quid to a big charity that pays their CEOs an obscene salary. I have a disability, I have dual diagnosis, I am physically able and my challenges are not obvious but I struggle significantly in my day to day living everyday - I don't have the money to donate a few quid to big charities but I give my time to others as much as I can around my commitments. 

I try to bridge the gap in understanding between those who have autism and those who do not as much as is possible from my own experiences. I try to support my friends going through their own difficult experiences caused by autism. I try to help younger people with autism and without autism see the good in themselves, to inspire confidence in them and to provide any support I can to make their life better, so they do not feel alone. I might have my struggles but I do as much as I can to help knowing it will never be enough. As a society we must stop tearing other people down and start building them up, start inspiring confidence in others and understanding difference - we are all different. Services should be there to build us up not bring us down.

Now I have written this post tearing into services but it is needed because attitudes within services need to change. However as much as I am doing that here my many suggestions for improvement will be made in an appropriate way but for those suggestions to be taken on board, the failures and the impact of those failures must too be highlighted.

Services for people with Autism & ADHD are not good enough

I have been quiet for a little while and I guess this is kind of why - services for people with Autism & ADHD are not good enough. One of the things I say is that I have a voice and I want to be heard...well I don't feel like my voice is being heard much less listened to right now so here I am and here is this post. I feel there is this assumption that as I have autism what could I possibly know about what is good for me and what I need? That is how I feel and I need to get this out here and now.

I feel powerless. Totally and utterly powerless. And writing this post is evoking extreme emotions I am unable to rationalise or fully express. I am now 28 years old and I have finally just been diagnosed with ADHD, a few years following my diagnosis of Asperger's Syndrome. But I'm no different to the person I have always been...except now I know. I am told I should take delight and pride in my achievement, that it is much greater because I grew up with undiagnosed autism and ADHD, battling against each other. And I didn't come out too badly so all is well - but is it? Is it ok that I struggled horrifically, invisibly, to get to where I am now? And if I got here by the skin of my teeth, if I just managed to get here well what else could I have done with some support? What is there in me that remains locked, untapped, untouched, unused, wasted?

My 20s have not been typical - I didn't go to festivals, clubs, on holidays with friends, travelling. I haven't had those types of carefree experiences, these years have been heavy, fraught with struggles, my experiences included mental health services, crisis intervention, diagnostic assessments and psychology appointments - if you are able to look in from the outside and be dismissive you have no idea how lucky you are that you do not have to understand or experience this. When I transitioned into adulthood it was like turning up to climb Everest with the equipment to go scuba diving - I had to improvise, I had to be resourceful and when you grow up undiagnosed you certainly know how to be resourceful. I am a master at resourceful, at blending, at hiding the fact that I don't understand what you are saying or doing. My life growing up was about masking all the things that made me different. My 20s and the demands of adulthood have brought me to my knees but they haven't been entirely without success. I have still done and achieved things that not many would and maybe it is these things which are part of the problem I have now.

Services for people with Autism & ADHD are not good enough. As much as I have been theorising about if I had had extra support with an earlier diagnosis, it is entirely possible that if I had been diagnosed as a child that things would have been no different. My childhood might have been a completely different kind of battle with services. But I couldn't imagine the diagnosis or knowledge making any difference and that is wrong because it should, it really should. If we can't get it right for children, how can we get it right for adults? It is all hypothetical of course, I could never know what life would be if I had been diagnosed earlier and I can't change it, but life as someone with a late diagnosis - well I have gotten by but things steadily deteriorated. I have been unable to sustain and maintain the sheer effort required for that base level of living and certainly not on my own. I'm talking the basics. I have never been independent as an adult. The older I got the more burnt out I felt, the less I have been able to cope with. Struggles I have which aren't visible because they aren't understandable. How could I do that fine then but not now? Why was that possible then but not now? How come you couldn't do it yesterday but today you can? You coped well before, you won a kickboxing world title, you did a speech to all those people - you're so focused and driven - you don't need help, how could you be struggling? But I am.

I was diagnosed with ADHD on the 7th July and my diagnosis didn't come about through just waking up one morning and thinking 'hey maybe I have ADHD, maybe I should see if I can get a diagnosis for the fun of it' - I never ever imagined ADHD would apply to me. It has been an explanation of a set of longstanding problems and difficulties I have experienced and the diagnosis has brought with it more frustration - life with ADHD does not feel fun. I was diagnosed by the ADHD & Asperger's team - so they should understand Asperger's and I thought that the assessment would be as hard as it got, (the assessment did not take into account that I had Asperger's which made it tougher to go through). But we are approaching the end of August now and I feel as though I have been forgotten. On the day I was given my diagnosis there was so much information to take in, first the information about why they were giving me the diagnosis and then the what happens next. I simply do not have the ability to process that amount of information presented verbally and nothing has been followed up in writing aside from the sheet of paper presented to me with a list of books about ADHD on it and this is incredibly disappointing especially as I was told to expect a letter within a couple of weeks confirming my diagnosis. My concentration and attention has been so bad lately I don't think I could sit and read a book. I have been trying to ascertain what is going on and when all the things they told me would have happened by now are going to happen. It is confusing. Why would they say it is going to happen within a timescale that it wouldn't? Have I just been forgotten? Of course I understand the limited resource and associated wait but at least is there not any indication because I need to know these things or I become crippled by anxiety - and sadly this has happened. Life is constant confusion.

Is any of this good enough? Should it just be accepted and what can be done about it? I was taught many years ago that you have no right to complain if you are not going to do anything about it - accept it or change it. So what is the plan here? While I am faced with this agonising wait for a follow up to this diagnosis, for discussion about medication - how can I make my life better for a start because that is what I was referred for some 9 months ago now. How can I begin to make sense of this when I don't have the tools or support to understand it? I have been placated with 'hang in there, what is waiting a few more months when you have always had to cope with this' - seriously?! But maybe there is some truth in this. In the grand scheme of things what am I? Just another patient, client, statistic - part of somebody's job that they can pack up and go home from at 5pm...but this IS my LIFE and my life runs 24 hours a day, 7 days a week. So what is there left to do but be resourceful and try and figure it out on my own...which is great I know exactly what I need in place contrary to popular belief but if I could act to put all these things in place on my own then why would I need the support in the first place? Maybe I wouldn't even have the diagnoses I have now. And the frustration caused by knowing what I need but being unable to implement it is undescribable.

And this is not the only experience I could describe, to describe them all would take me beyond a reasonable length for this post but at the moment it is the most pertinent. I was diagnosed with Asperger's in 2010 and now in 2014 have only just been made aware of what support I could and should be getting. After more years of stress and anxiety trying to just get on with it, being let down. I have had services apologise that they cannot help me but thanked me for teaching them about autism. I have been told by services that were there to help me with employment that they were used to working with people who were more disabled than me so this should be easy before they had even sat me down for our first meeting - and they failed. If I was so easy to support, why did they fail? I sensed all they were interested in was signing off their paperwork and closing their cases rather than supporting me to get where I wanted to be and into what was right for me. I am a person, I am complex and intelligent with feelings. I want to contribute and be part of society but I feel disconnected and isolated. I want the chance to show what I am capable of and to be supported in that but instead I feel less and worthless. Forgotten.

 

And the saddest thing is my experiences are not the only ones, nor are they the worst. Things can be a lot lot worse and in all honesty I haven't been able to explain my experiences in their entirety, some of it is too painful and upsetting. But sadder still is that these are the experiences that children are having and using to form an opinion about their disability with - as an adult doing the same I must end this post with the quote "it is easier to build up a child than to repair an adult". Services for people with Autism & ADHD are not good enough - it is obvious that a major issue lies within funding but for this to change there needs to be awareness and understanding in the right places. And how do we achieve that?

Sponsors for 2014 - SEN Magazine & Tough Furniture Ltd

2014 has been very difficult for me. It has been a year with challenges everywhere I turn - I have had significant injuries, a diagnosis of ADHD and a lot more in between. One thing that has been consistent with other years though has been the need and battle to find funding for my sport, in particular the World Championships. I had hoped to raise the money bit by bit over the course of the year but circumstances meant this was not possible, instead I had a lot of stress over the last month or two trying to find what to me is such a large sum of money.

I wrote to companies and appealed over social media through my Go Fund Me page and the response from friends and followers in sharing my fund page and offers to help me find a sponsor were simply amazing. I am lucky to have and know such kind and caring people and I'd like to thank you all now for your efforts.

Fortunately I have managed to find sponsorship and it has relieved such a huge amount of stress. I have always found it so hard to find sponsors so to have people come forward and offer to sponsor me has just been so unbelievable and I really hope that I do not let them down. So I wanted to take the time to announce my sponsors and explain a little about what they do.

SEN Magazine - www.senmagazine.co.uk

SEN Magazine is the UK's leading special educational needs magazine which provides inspiring features, the latest news and practical advice on all things SEN. Keep up to date, read articles by SEN experts, share best practice and develop your skills.

Tough Furniture Ltd - www.toughfurniture.com

Tough Furniture - for challenging environments. Tough Furniture are specialists in the supply of attractive, yet very strong furniture, to suit the special needs of challenging environments where abuse, carelessness or challenging behaviour is a problem.

I am so grateful to both SEN Magazine and Tough Furniture for their support as without it would be impossible for me to fund both myself and the additional supporter that I need to be able to attend. Please follow the links to their websites to find out more about them and like / follow them on facebook. 

Once again thanks to everyone who contributed to my Go Fund Me page. I am still looking for sponsors for the Irish Open next year and UK competitions and raising money to cover my training costs (including remedial treatments) so money contributed so far will go toward my preparation for the World Championships.

For more information check out my newly updated website www.joredman.com

My Competitive Strategies

Strength. What is strength? What does it mean? To me being strong is not hiding your weaknesses, or ignoring them. Rather it is acknowledging that those things are there, accepting and embracing them as part of what makes you who you are and then overcoming that to become all you want to be. To quote Nelson Mandela "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear". To be afraid but to do it anyway, to succeed anyway, that is strength. 

We all have these situations where we fear something, we fear being different, fear failure, fear being great - there is always something. I fear not reaching my potential, wasting my life and time, not being understood. In fact I also fear the things I do most of the day, feeling anxiety that does not match the importance of the situation. I live in a constant state of fear and anxiety because I feel inadequate when I have to ask why or what you mean. I fear getting it wrong because this has happened so much to me and no matter how much it doesn't get any easier to deal with.

But I am alive. I am here alongside you, living a life, my life. It is probably not like your life, but who has the exact same life anyway? I am guilty of forgetting that being alive is a wonderful thing no matter how anxious you are, how much you fear or how difficult things seem to be - living is good. I have succeeded at something just because I am here.

I can only live my life in the way that makes sense to me. And through that I am free and it is ok. Things are going to be tough, problems will surface and obstacles will be there but I will find a way to stay free, to achieve my goals and be all that I was meant to be. All my life without realising it I have been creating and adapting strategies in order to cope and get the most out of my time here.

A lot of my blog posts recently have talked about how I have been struggling with my concentration on simple day to day things and in how I have struggled to cope with the feelings this brought on in me. But this struggle has always been the same albeit sometimes to less of an extreme. I think a lot, some might say obsessively, I prefer intensely and I have been racking my brain about what I was like years ago, did I have these challenges and how did I cope? And the answers are interesting, or at least they were to me. 

I am exceptionally good at repetitive tasks but they bore me, I need to approach them in a certain way to be able to do them. In my second job I was working on a project and did the same work all day long, everyday. I struggled greatly with this, my mind would wander and I'd daydream about fighting and all kinds of things. I could put together a work process in no time at all but I couldn't sit and read the 10 page guidance notes and updates and meeting minutes that were provided about what the work was for and how it should be conducted. It got to the stage where my manager would just highlight the things I needed to consider that might not be obvious to me. I could just 

see the logical processes and how it needed to work so to me reading all this repetitive documentation was pointless. 

But the data work I had to do was so monotonous - it amounted to a lot of proof reading, data checking and cleansing. As it was I couldn't approach this at all, I tried to do the work but would drift off staring into space. This was pre-diagnosis and I had nobody really giving me any strategies to cope or any understanding of why I couldn't maintain my attention on my work. I realised I was struggling to start and I was losing track of what I had done because there was no order or structure to the work. So I made a few rules and a logical approach to follow and I set about doing the task like this which worked great for a while until the novelty of following the new process wore off and I was stuck again. 

Now I am a fighter, I am very competitive and I was very aware of my drive to win and succeed, kickboxing seemed to be the only thing I could really do long term with any success. It seems like I work at my best with a little pressure and competition. So I thought why not see if I can apply how I am in kickboxing to other areas and made it a competition. Every hour I was determined to improve my record of how many data records I had successfully got through. In the second hour the improvement was slight but after this it would be 50 records more and more and more as I got used to the process and the work just became automatic. I became so in tune with what I needed to look for, correct and match that my brain only saw what it needed to and cut the rest out. I reached phenomenal work rates in the amount I was getting through each time beating the previous hour and throughout this time you couldn't reach me, I was so focused on my activity, on my competition. 

And thinking back further everything has always been a competition. Working in a warehouse I'd "compete" against all the other workers, wanting to pick more items than anyone else, I'd get so frustrated when I couldn't find an item because it slowed me down... In my first job every piece of work given to me I had to do as quickly as I could to surprise whoever gave me the work and similar to my second job, when entering orders I conditioned myself to see only the necessary fields. There was competition with myself in that I was always striving to add more tasks, more responsibilities to my workload, to handle more and more.

All this competition produced great work but I could not give myself time out, I had to maintain that level of activity all day everyday and naturally this just wasn't possible. I'd get burnout and again be unable to concentrate but overall it all balanced itself out as when I was so focused on my work I was doing vast amounts in such a short space of time.

My mind has to be occupied with something constantly or I just drift off. So now the challenge is how can I keep it occupied, how can I create that sense of competition again in my daily activities and how do I start? I know that I will find a way to do this because the alternative is to do nothing and I can't do that. And right now this is tough, it is frustrating and I get really angry with myself. I am even more anxious because I feel I am getting nowhere but I have encountered this before and I dealt with then just like I will now. My history tells me that although I have those fears, those obstacles I am strong enough and driven enough to overcome them to succeed. And the difference now is that I know. I know what I am dealing with and that has to give me an advantage in producing a new strategy that will enable me to get the most out of my life.