6 February 2015

App Review - Carezone

I am going to start my app review with an app called Carezone. I can't even remember how I came across Carezone, it wasn't an app or type of app I was specifically looking for but some of the things I specifically find difficult are regarding the management of my health, remembering to take medication and generally knowing where to find information. I had got to this point where information around my health was stored in all these various places - electronic files, filing cabinets, admin trays and keeping track of all the different professionals and people involved and also determining who could help me with different aspects of managing my care was really stressful. So when I came across Carezone I thought it was worth investigating.

Carezone is free to sign up for and is designed to enable you manage the different aspects of caring for someone. You can manage multiple profiles so while it has its merits for myself, for a parent of children with additional needs it could be really useful particularly because it also enables you to share Carezone profiles which then makes it easier to co-ordinate care. You can use it on your desktop computer, tablet and smartphone and all information syncs together. 

So why do I think Carezone is useful, what does it actually do? 
How you make use of the features of Carezone is up to you but here is a run through of what I use each feature for and what the potential for use could be:
  • Profiles / Carezone - for each person you care for you can create a profile or carezone which keeps information about their care needs (detailed below). These can be shared with whomever you choose on an individual basis and you can also restrict specific information for privacy if necessary. So I have a profile for myself and I also set one up for my dog to keep all his information together and so far I have shared both of these profiles with my husband so he can see what is going on without me having to tell him. In the future I can share my profile with friends or family as necessary and also with support workers - depending on whether they chose to use this app. 
  • Journals - each Carezone has its own journals and I have found this really useful. Having just started ADHD medication and having difficulty with sleep I have set myself a reminder with a question about how my concentration has been and how my sleep has been. By being prompted to record this information it means when I see the specialist I am able to give a better account of how well it has been going since last time. I also update my journal with information about appointments I have had which helps me to process what happened, it also tells my husband what happened if he didn't go with me so he doesn't have to ask he gets an email notifying him I have updated my journal. He finds this really useful as I really struggle to remember to or actually communicate things to him. He is also able to enter a journal entry about any behaviour or event he is worried about and he can make comments on my journal entries. So for parents this could be good to update how their child has been with the other parent or a carer to add input or their observations. And then a record is being created of events which can be helpful in identifying triggers or patterns to behaviour. If a carer has access to the Carezone they can provide updates on behaviour etc or school updates can be copy and pasted into journals to keep all that information on behavioural patterns and challenges in one place, easily accessible and evidence to pass onto medical professionals. Updates can also be privately shared with specific people on a post by post basis.
  • Contacts - this is straightforward, this is a list of relevant contacts for that person's care. You can import these from your phone contacts or add them in manually. This is useful for me because I struggle to contact health professionals so I have to ask someone else to do this for me. This means I am forever, even to my husband, having to find the telephone number or address to pass on. Now they are all in one place and better still my husband doesn't need to ask, he can go into the profile and find the information himself - this means one less task for me and that makes a difference. For a parent it can be useful depending on how organised you manage to be, how often do you need to contact someone and then spend ages trying to find out the telephone number or details - to have it all in one place with nothing else to scroll through is certainly an advantage.
  • Medications - the medications feature is great and the more medication that needs to be managed the more useful it is. Carezone helps you to keep an up to date list of the medication you need to take and how often. Medications can be input manually or you can take photos of the label and it will take the information from here. Once you have input your medication and how regularly you need to take it Carezone creates a schedule. You can set reminders to take medication and also reminders to request and collect repeat prescriptions. You can make note of who prescribed the medication and where you get it from and you can also keep log of medications that you no longer take. The schedule enables you to record which medication you take, this is useful for showing missed doses and also how often you have needed to take PRN medication. You could combine this with a journal entry explaining why you took PRN medication to help build a story to feedback to your doctor. But what else this section does is enable you to print off or share medication lists with various levels of detail and medical information cards stating what medication you take in case of emergency. These lists could be shared if your child or the person you care for is staying with a relative or on a residential trip and again could help to save you time writing out and filling in information.
  • Calendar - each Carezone profile has its own calendar. This can be added as a calendar onto your device or shared with someone via email. All medical appointments can be added onto this calendar and alerts can be programmed. I don't use this calendar to remind me of appointments or events and I don't use the alerts because I use the calendar on my iPhone. But the Carezone calendar has an important use for my care. I need to be accompanied to medical appointments because I struggle to communicate and understand without support. Carezone lets you assign a calendar event to someone or select that you need a volunteer. So how I use this is that I input appointments I need help with and I assign someone, for example if I know my husband can take me I assign him and he gets an email telling him he has been assigned an event and he gets a reminder. If he can't go with me I select "needs a volunteer" and then all those I have shared my Carezone with get an email telling them I need help and giving details of the appointment and this email will be sent daily until someone is assigned. So currently it reminds my husband he needs to help me work out how these appointments will be managed. Appointments are stressful for me to organise. Carezone also automatically inputs onto the calendar when repeat prescriptions are needed with an alert.
  • To-Dos - this to-do list is very simplistic. It doesn't enable deadlines but similar to the calendar above it allows you to assign to someone or request a volunteer. I currently use it to assign to my husband the things I need him to do on my behalf for my care, things like contacting health professionals. This helps me because I don't have to wait until I see him or to hassle him with messages, I can add it onto the list and assign it to him and he then gets emails. He said this works better for him because he can check it later and add it onto his own to do list and plan it in. Also if I need help with a task I can select "needs a volunteer" which means the email goes out telling those who have access to my Carezone I need help. This would give a good overview of what needs to be done to parents sharing care of their child or anyone caring for another family member.
  • Notes - this is just straightforward, any notes on any information such as instructions on dealing with specific behaviours, references to anything you need to remember such as insurance numbers or anything else. On my dog's profile I have a note with his microchip number in and things like that. These notes can be made private or shared only with specific people.
  • Photos & Files - you can upload photos and files about the person being cared for. I have uploaded my diagnostic assessment reports, I have a letter from my GP regarding my difficulties in airports, files with plans about what to do in emergencies and letters about my care. These photos and files can be made private or shared only with specific people. From a perspective of if at some stage I shared access to my Carezone with a support worker this could be helpful in terms of reference for them if something went wrong being able to access my plans and information files on the go.
Carezone also gives you articles and news on subjects you highlight as an interest ie specific medical conditions. You can set the app to be protected by a passcode and set how you wish to receive notifications. I use Dropbox for files and also Evernote for jotting down thoughts and ideas etc and Carezone is like a more streamlined and medical equivalent to these applications but with additional, useful features specific to co-ordinating and managing the care of someone else. So far I have found it really useful and it gives me a sense of control and order surrounding managing all the appointments I have been having. My husband has also found it useful in keeping up to date with what has been happening and how situations have been changing - he has a much better idea about how I am feeling or coping on a day to day basis. 

From my perspective as an adult who has diagnoses of Asperger's and ADHD and needs support to manage medication and health it has been very useful in making sure I am getting the support and communicating the support from and to those who are there to support. So it is useful to adults in similar situations as myself, however I feel that for parents or caregivers of children or of adults who need their care managed for them this app could be of even greater use and benefit if utilised fully. I would advise if you were to use this app that adequate time was spent on setting it up with information and ensuring all those who are involved in providing care were on board and understanding of how it works to ensure maximum benefit.

For more information on Carezone, click here or search in App Store or on android.

Click here for more information on my App Review blogs.

5 February 2015

App Review

Diagnosis with ADHD last year gave me an explanation as to why even with the knowledge of my Asperger's diagnosis I had been unsuccessful in establishing structures and strategies that enabled me to function fully and get things done. Contrary to popular belief (it seems) many people who have a diagnosis of Asperger's Syndrome, ADHD or autism spectrum condition do actually want to be as independent as they can be and do as much as they can to "help themselves" - I am one of those people and it just wasn't working for me and I couldn't work out why.

I am a highly intelligent person but I do struggle significantly with some simple and fundamental activities many take for granted and my writing style gives false impression that such things could not possibly be a challenge for me - things like communication, understanding and adapting to change. I can see the kind of things I need in order to increase my independence but to implement these alone is a cause of great frustration as it just fails for reasons I don't fully understand no matter how hard I "try". 

After the ADHD diagnosis I had a renewed sense of knowing I needed something in place that kept me organised, reminded me of my daily responsibilities and as far as possible aided me in carrying these things out. One of the most useful tools I have is my iPad and iPhone - to me these are not luxury items, they are necessary. Paper organisation systems become overwhelming and get lost. Everything in one place, accessible at any time - out of my head is such an attractive proposition and if you spent any time inside my head you would totally get why.

So I set about finding apps and tools I felt would be able to help me manage some of the areas I face challenges in to free up my mind to be able to learn and concentrate on skills that were missing. To me this was a logical approach and in the absence of support and guidance from professionals it has been all I have had to go with. I have plans for a whole app based system to help with some of my challenges - this is not fully set up yet so there will be lots to work out to make sure it works as best it can although I know too that this system on its own is only going to be a foundation as on its own it will not be the answer or solution to all the difficulties and challenges I face. 

In the next few blog posts I am intending to cover various different applications I have discovered that may be useful to people who have a diagnosis of autism or ADHD or both and their families. Each app or part of the system I have devised will have its own post and I will update this blog with a content list and link to the blog. I am always on the look out for any apps which may be helpful so please feel free to suggest any in comments. Take from this what you can, different things work for different people and I'm just sharing what I have found in the hope it might help someone else.

Blog Post 1 - Carezone - co-ordinate and manage the health and care of yourself and your family

23 December 2014

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.

17 November 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

31 October 2014

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.

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

9 September 2014

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.

25 August 2014

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?