Who's bright idea was it to run a business???

Late 2011 I decided I wanted to change jobs and become a sport and remedial massage practitioner.  I considered all the difficult social related elements involved with sport massage and felt confident I could rise to the challenge.  Since my diagnosis I have almost been like the child who has just taken the stabiliser wheels off their bike and thinks it will be easy to ride without them, I've just flung myself into all the things I wanted to do.  Being diagnosed late I'd always worried about who I was and never really pursued anything I wanted to do, my diagnosis was the figurative green light that signalled it is ok, go ahead.  So I went through a year's worth of training to qualify as a sport and remedial massage practitioner in 2012.

At the end of 2012 and beginning of 2013 I began the task of preparing to be self employed running my own business.  Why I wasn't at all fazed by this back then I have no idea!  Just over half way through 2013 I'm thinking why did I have this idea to do something like this?!  For someone who finds most of the world quite hard to work out normally entering the world of business and networking feels as though I have been tied to a spinning top.  For me social media was great...until I had to start being social!

But it is not only that world and it was not only the sport massage knowledge I had to learn, I've also had to learn how the 'system' works, I have to learn how to market and sell myself and consider how my business runs so that I am compliant with legislation and following best practice.  So now I'm thinking I should have booked myself on more courses than just the clinical sport and remedial massage diploma I did.

Fortunately for me the local NAS have been supporting me although supporting into self employment is a new things for them too.  They have been able to help me to work things out, structure my business and help give direction to my weeks by helping me to prioritise what I need to do first.  The whole process has been hard and I also recognise that I probably make things more complicated with my perfectionism.  I am also lucky that my husband has many hidden talents and has been able to assist with design and technical elements I might have struggled with.

However anything worth having in life is hard.  If it was easy we would all do it and then there would be no value in it.  But I am not one to give up or give in - as much as I would sometimes like to.  I've learnt to be incredibly resourceful throughout my life growing up undiagnosed and I'm not prepared to fail without knowing that I have put every ounce of energy into what I'm doing.  And to be honest right now I am not even thinking about the possibility of failure, I have invested time and money into the dream of a career I love and I'm not doing badly.  Things are probably taking me longer because of the additional challenges that come along with having Asperger's Syndrome and some delays with accessing support but I'm confident I have the right support now, I'm excited about the future and perhaps a little impatient for it to all really kick off.  I know there will be many more challenges and twists in the road but I will learn to deal with those and become a better, more confident person for it.  I worry about my naivety, picking up on 'bad vibes' and also of being taken advantage of.

And the good news?  Since I started doing sport and remedial massage my social skills have dramatically improved.  I have a lot more confidence when speaking to people and I'm more tolerant of small talk and chit chat seeing it as 'part of the job'.  Sometimes I feel terribly awkward and uncomfortable, I have absolutely no idea how noticeable it is but I put it to one side.  A lot of my clients know I have Asperger's, I don't hide it but nor do I drop it in when they come for their first appointment.  I'm happy to talk about it but also don't feel I need to talk about it, just like with anything else in my life it is just another thing in my life but not one that will be a barrier to the life I want. 

For more information on my business you can check out my business website www.topformremedial.com, find my Facebook page https://www.facebook.com/TopFormSportsRemedialMassage or follow me on Twitter @TopFormSRM

Pets And Their Importance

So this is my second blog post in less than a day but I feel I really need to get this out of my system.  Last week I lost my best friend, my 14 year old black labrador Becks.

 

To some people animals are just animals but to me Becks was so much more than just a pet.  There are also people who feel their pets are more than a family pet and are a full family member but again to me Becks was so much more than just that.  Becks was my truest friend, my closest ally and trusted confidante.

At 12 years old, a year or so after my family had lost Kelly the family dog, I had begged and begged my parents for another dog and was absolutely delighted when they finally relented and we visited a litter of 6 gorgeous black labrador puppies.  My two brothers and I fell in love with Becks from the start.  He was the most placid of the puppies, so easy going and patient and these qualities never changed.  

Back in those days I was a quiet young girl with a passion for football, I hadn't even started kickboxing and so Becks was named after David Beckham - my hero at the time.  I also hadn't been diagnosed with Asperger's Syndrome and having Becks proved to be so vital to me over my teenage years, we grew to be inseparable.  I spent hours training him and teaching him little tricks, Becks was always eager to learn and some worked out well and some not so well.  I'm sure a lot of people have had the dream of teaching their dog to fetch them the newspaper out of the door....well I taught Becks how to do this, it worked well until he decided it would be more fun to snatch the newspaper out of the door and bark at the closed door! But most of the things I taught him surprisingly worked well despite my younger brother's interference - I remember one occasion where I was trying to teach Becks 'fetch' in the garden and my little brother decided to chase him round the garden which of course Becks thought was much more fun!!

Anyone who has grown up with Asperger's Syndrome will tell you that it isn't easy but when you grow up not knowing that you have Asperger's Syndrome life can be incredibly confusing, scary and sad, not knowing why you are different - this was my experience.  In my teenage years I withdrew into myself a lot, I really struggled to connect with other people and to me it seemed that the people around me expected things of me that I could not give nor could I be.  Then there was Becks.  Becks who never expected me to be anything more than I was, who chose my company and completely adored me.  So many people loved Becks and to so many children he was almost like their puppy too, they all wanted him but he was mine and for someone who had often felt 'bottom of the pile' that acceptance and unconditional love was so so important even if it came from a dog.

Becks always knew when I was upset or something was wrong.  He was an incredibly affectionate and intuitive dog.  I remember going through school I would just want to get home and see him because I knew when I did I would feel calm again.  When there were bad days I would sit with Becks in the dark and somehow it all just felt better, he always stayed by my side and never left.  One particular occasion that I remember vividly is when as an adult I had an occupational therapist visit me at home, again this was pre-diagnosis and at that time I suffered a lot of anxiety brought on through the worry of not knowing why some things didn't make sense to me.  These visits were incredibly anxiety provoking for me and Becks must have sensed this.  Normally when someone came to visit he would fuss around at the start but then get bored and either sleep or play with a toy somewhere else but on this occasion he sat by my side, eventually jumping up onto the sofa by me and resting his head on my leg.  It was as though he knew I needed him.

Then came the day where I left home to make my own home with my husband.  I missed Becks so much and we regularly had him come to visit and stay over night until he became too old.  Despite the fact that I no longer lived at the family home Becks didn't forget me and everytime we were together it was just as it had always been.

Over this year Becks began to show signs of old age, physically he began to deteriorate and had difficulty walking.  It has been heartbreaking to see him slowly stop running around, climbing stairs, jumping over things and playing.  All year I have been dreading the day that I would lose him until I realised that I could never lose him.  Whether Becks is still here or not he has helped to shape my life and played a role I wouldn't have had anyone else fill.  So last Thursday when Becks suddenly became very ill I put everything to one side to make sure he was as comfortable as he could possibly be until we were able to have him put to sleep.  As sad and awful that day was I will always treasure those hours I spent with Becks in my arms hoping that what I was doing could in some way repay him for everything he gave me and I was glad to hold him in my arms as he shut his eyes for the final time.  One amazing, legend of a dog that I will miss terribly.  RIP Becks, my best friend.

"Nothing is nicer than having someone who appreciates you in the smallest things.. Accepts you in times of hardships. Comforts you when you're troubled. Loves you no matter what and is simply happy for having you in their life." - Ritu Ghatourey

Autism Show, House of Commons & Becoming a Patron for Anna Kennedy Online!

I have been up to so much recently that it has been difficult to keep up with blog posts, I thought I might as well combine all of these into one post - if I can manage to contain my excitement!  And it truly has been an exciting time for me, exciting and a complete whirlwind, so much so that I'm wondering how I am managing to keep up with everything and this crazy juggling act I feel I'm doing.  In truth I'm probably not keeping up too well hence the lack of blog posts BUT I am still learning...

The Autism Show - Excel Arena, London - 14th June 2013

There I was one day just minding my own business, still incredibly overwhelmed at the response from Autism's Got Talent when my mobile phone rang and who could it be other than Anna Kennedy!  I think I answered it, can't quite remember (I'm not the best at answering my mobile, depends whether I feel I can cope with a conversation) but the message was simple, "please can you come and do a talk at the Autism Show as part of Autism's Got Talent..." ended with the usual I need to know by yesterday!  Of course my answer was an emphatic yes, I always feel it is an honour to be asked to share my story.  

Next came the working out of the logistics...who can help me get to London?  I am terrible at working out where I have got to go - signs, timetables, directions, it is all confusion to me and you'd think I'd be able to pinpoint all the relevant information with my attention to detail but somehow it doesn't seem to quite work like that.  Normally Adam my husband has the unenviable task of dragging me through train stations and airports and to new, big, busy places however unfortunately on this occasion he was unable to take time off work due to the fact we were on holiday the following week!  Luckily I managed to find a friend to come along with me, Amy who was more than happy to come along given her profession as a speech and language therapist. she was quite looking forward to having a look around at the event.

Being the perfectionist crazy person that I am, I decided that instead of doing the same word for word talk I did for Autism's Got Talent that I would change it slightly.  I think that I had been doing a lot of work for my business that I had begun to realise how much of a challenge and achievement it was for me to be doing that as well as my more obvious achievements in kickboxing and I decided I wanted to balance that out a little bit.

I am still very new to speaking to larger audiences, I am used to big audiences of small people in schools or small groups of adults - so speaking to all these grown ups who also have some experience of autism is quite daunting.  I have always struggled with confidence and have never been the kind of person to speak up in groups and previously I would have done anything to avoid this kind of activity which my friend Amy reflected on having known me from my school years.  What has changed since then in me is a defiant belief that I can do anything I want to do and that I have a right to be heard and understood for who I am.

I really enjoyed doing the talk and after I had finished Anna Kennedy made the announcement that she would like me to become a patron for her charity.  It was an amazing feeling and honour to be asked to fill a role that I personally thinks carries so much responsibility.  Growing up as I have done and often feeling 'bottom of the pile' to others it was such a great feeling to know that Anna thinks that I can be a good role model to other people.  I really hope that I am able to live up to that and want to do as much as I can to help others and bring awareness to the challenges but also positive stories about Asperger's and autism.

House of Commons - Positive Image Celebrating Women in Sport

So there I was a week after the Autism Show on holiday and again Anna Kennedy calls.  'Jo, do you want to come to the House of Commons on Tuesday?'  Completely taken by surprise I thought why not.  Anna had been invited to an event by one her Tesco Mum of the Year friends Kate Hardcastle, it was an event as part of Kate's Positive Image Inspiring Confidence campaign with this event in particular celebrating women in sport.  Anna thought as I was a woman and heavily involved in sport that this would be a great opportunity for me.  I, of course, agreed!

So on Tuesday 25th June, my husband and I travelled down to London once again to the House of Commons.  Here we went on a tour and met Victoria Pendleton.  Anna said some really nice things about how great I was to Victoria.  My experience at the House of Commons was brilliant - I met some fantastic, inspiring women including Tina Boden who has since been in contact with me trying to help me to raise the funds I need to be able to compete in this year's World Championships.  Anna was great to me again in bringing my challenges in getting the funding to be able to compete to the attention of various people.

If anyone is able to help me out, however big or small, with getting to World Championships please go to this address http://www.gofundme.com/2kvedw - I really appreciate any help or support given.

Winning & Working Hard

Winning and working hard are usually two things that come as a pair and it's something that I do on a daily basis.  Everyday I am working hard and everyday I am winning and I don't mean in a sporting sense.  

I grew up undiagnosed on the autistic spectrum and I can tell you that is not easy and certainly not fun.  To not understand or know why you can't seem to do some of the things everyone else is doing is simply devastating to your confidence and self-esteem let alone the fact not only could I not do those things but I also did not have the help I needed.  To have always felt on the periphery of social groups and like you never belong or fit in and to not know how to connect with others has always been something that made me feel unbelievably sad and terribly inadequate - never underestimate the value of those things.  On the outside I appear completely "normal" most of the time, especially to people who know me and who I am comfortable with, but all of the time I'm having to work incredibly hard just to keep up with the world and you.  To some people it is implausible to think that I could have difficulty with a lot of the things I do and to those people I can come across as being rude, disrespectful, insincere, awkward and even a little bit thick.  I am anything other than those things, I want and try so hard to please and help other people going way beyond what is required or even expected of me in order to do so but often this is not noticeable.

Since I was diagnosed with Asperger's Syndrome I have achieved a lot of things both in my sport and also in other areas of my life.  I attribute this to the attitude I have rather than to how much or little ability I have.  The most able and talented of people will not achieve without the right attitude to working hard - life is all about attitude.  I am fortunate to be able to say that to me Asperger's Syndrome means that I just have to work a little harder to achieve my goals than other people might.  I am determined and driven, I want to succeed, hate to lose and refuse to accept what people believe I can't do - I love to prove them wrong and make no mistake if you ever doubt me I will prove you wrong.

You could say that some of the traits of Asperger's Syndrome are like an extreme form of what other people experience in some of their daily lives.  To me Asperger's Syndrome is never knowing what to say to people, needing structure and organisation, struggling to understand what others mean to name a few but I'm sure there are many people that can say they have experienced times where they didn't know what to say or where to start.  For me it is just more extreme and an everyday challenge, the most trivial of things to you can be incredibly upsetting to me.  I have to have a purpose to everything I do, everything has to be logical and make sense - sometimes I need help to see the logic and without it I won't do what you're asking me to do.  

Asperger's frustrates me intensely on occasion - some days I resent the fact I have Asperger's to the extent that I resent myself and suddenly everything made harder by having Asperger's I can't do.  I do have those days but because of them I also find life with Asperger's to be quite rewarding.  When I have worked hard to achieve something and it pays off the fact I had to work harder makes it doubly as rewarding, the end outcome of some of my perfectionism can be truly worth the frustration and just being to true to who I am is such a relief after the years I spent worrying and covering up my difficulties through fear.  I enjoy my own company, I'm happy and content doing the things I love and I'm at peace with who I am - there are few people in the world who can say that.

So please forgive me for the fact I don't always look you in the eye, forgive me for not always picking up on how you feel or what you mean and forgive me when I do something you don't understand because I forgive you for not understanding.  Asperger's Syndrome and kickboxing are the perfect marriage for me because through having Asperger's Syndrome and growing up undiagnosed I know what it means to fight and I know what it takes to win - I have had to fight for everything I have, just to live in your world...and I'm still winning, everyday. 

Sounds & Distractions

It's been a while since my last update and really I didn't mean for it to have been so long, I have been incredibly busy and stressed with it. I have just got a new tablet and new business phone and trying to adjust to these and also making the most of new technologies has proved slightly challenging even though I am pretty good with new technology. However here I am now, sat with said tablet writing my first update on it.

Sounds and distractions are the inspiration behind this post, please bear in mind that I'm writing of my experiences and not a generalisation of Aspergers Syndrome. Tonight I was sat synchronizing my google calendar and booking systems onto various devices and various other things and it was taking me forever. I was getting distracted by the tv which my husband was watching and other things that were going on. I just couldn't think straight. I found myself getting more and more stressed out, the more stressed I became the harder things were and the more difficult it was to shut those things out. People with Asperger's sometimes have problems with how they perceive or process through their senses, with hearing being one of them.

Sensory issues can manifest in a number of ways, they can be heightened or under sensitised, specifically in terms of hearing (since this blog topic is sounds) certain sounds can appear louder than others, all sounds can hit at the same volume or certain sounds can be distressing. In social environments I find it so hard to follow what people are saying to me if there are lots of conversations going on or sounds around simply because I'm unable to filter out all the things I don't need to hear. It can be frustrating and embarrassing as I just end up nodding along, smiling like I have some idea what has been said and hoping they don't ask a question or I don't say something that reveals I have absolutely no idea what has been said over the last half an hour!

On this occasion in the end I resorted to getting hold of my headphones and iPod as I so often do in order to regain my concentration...and it worked! As soon as I pressed play an instant wave of calm and relief passed over me and I could concentrate again. I think this works by filtering out all the things my brain has to work hard to work out replacing it by something easier to listen to, music.  My husband often moans that it is like I have a soundtrack to my life as I walk around the house with my iPod on or music playing through loudspeaker on my iPhone,  its that or the hifi is blaring and he can't concentrate the same way I can with music. I seem to need music to fully concentrate, he needs quiet to concentrate and the odd sound doesn't distract him!  Does anyone else do this too?  Or what do you find distracts or helps you?

Autism's Got Talent

In recent months I have had the pleasure of meeting Anna Kennedy on twitter (@AnnaKennedy1).  Anna Kennedy is a wonderful woman who has dedicated a great amount of her time to advocating for those with autism through various ventures conducted by her charity Anna Kennedy Online.  She has been recognised with countless awards and honours including an OBE.  Having already shared my story with her in support of her anti-bullying campaing 'Give Us A Break', I was proud to think that she thought of me as inspirational through the things I have achieved and how I have turned my life around from what it once was.

Then a couple of weeks ago Anna got in contact with me to ask if I would be able to speak at the show Autism's Got Talent that Anna Kennedy Online were organising with help from Pineapple Performing Arts School.  Autism's Got Talent is a show featuring performers who are on the autistic spectrum.  I knew straight away that this was something I couldn't turn down.  This celebration of the talents of those who had an autistic spectrum condition was something that I really believe in and I always have a lot to say so I said yes!

The show was to be held on the 11th May at the Mermaid Theatre in London with an estimated audience between 400-600 people.  However first there was a matter of a meet and greet at Pineapple Dance Studios on the Friday.  Myself and my husband travelled down to London on Friday afternoon, negotiating the London Underground was not a prospect I relished and I know full well that without my husband's help I would have ended up well and truly lost!  On the way down to London he said "I think I would really enjoy going to London if I were going on my own", so I asked him why he wouldn't enjoy it so much going with me to which he replied "because you're a pain in the arse"....that just about sums up me and travelling!!

Myself and Anna Kennedy

Upon arrival we met the wonderful Austin and Lisa from the AKO team, who between the two of them got us to Pineapple Dance Studios in rush hour.  Here we met Anna Kennedy and some of the performers including one young man who had come all the way from Canada for the event! 

The next day we had to go to the Mermaid Theatre where the teams from AKO and Pineapple worked relentlessly to ensure the whole show would run smoothly that evening.  Just before doors opened and the big event began we all had our photos taken on the red carpet with Anna Kennedy (see above).  I felt slightly nervous about my planned talk, I had struggled to fit everything I wanted to say into it but I adopted my fighting mentality and relied on the belief and conviction I had for what I had planned to say.  I had the privilege to share a dressing room with two extremely talented singers Madelaine Hardy and Marie Gorton and we all helped keep each other calm and reassured.

For the first part of the show and following my contribution I sat in the auditorium as a member of the audience and was treated to some magnificent individual and group performances.  There was something for everyone over the evening with a rock band, dance groups, singers, raps and even a panto scene.  I enjoyed every single performance with everyone stepping onto the stage showing themselves to be a true star of the show.  It was so inspiring to watch everyone demonstrate their talents and through doing so give encouragement to other people to be who they are and believe in the things they can do.

And as for my talk...well I think this went well.  It was the first time I had spoken at something that big and I am relatively new to public speaking.  I have received some incredible feedback which I am extremely pleased about and more than anything hope that I might have helped to inspire others on the autistic spectrum...or not on the autistic spectrum to never give up and follow their dreams just as I have done to become who I am today.

I would like to thank all involved in the production of this wonderful show, your efforts were very much appreciated!  All in all I had a wonderful time and met some great people.

Misunderstandings and Ignorance

The intention of my blog isn't to go on just about the negatives or challenges of Asperger's.  I want to create a more rounded view showing the positives, but there are some challenges you can't ignore and one of these is the very reason I started this blog - misunderstandings. 

Misunderstandings happen on a daily basis in every walk of life, essentially it is a part of life.  But you could certainly argue that for people with Asperger's or autism misunderstandings happen on a greater frequency, let's face it when you process and think differently to the norm it is likely that this will be true.  But it is not just the misunderstanding that is the problem.

 

Generally where there is a misunderstanding, whether it leads to confrontation or not, it can be corrected.  Yes...sometimes the damage is already done but repair work can still be started.  In people with Asperger's sometimes this correction or repair is extremely difficult because they might not have the skills to negotiate such a situation.  In my experience these situations are unbearable and everything inside me fails to come out and I accept criticism or other negative consequences when it is inaccurate or unjust.  Either that or I end up feebly protesting to someone who is no longer listening.

 

Ok so that kind of covers misunderstandings as a result of an action.  However misunderstandings go much deeper than this, I suppose you could call them misassumptions.  By their very nature people with Asperger's or autism are misunderstood or subject to misassumption.  The way they present or appear from the outside can seem strange or even intimidating in some cases.  Such as the child acting out terribly in the supermarket that someone may assume is just a really naughty child when in fact that child is responding to a stimulus that upsets and distresses them.  Whether you know of a person's diagnosis or not there are likely to be behaviours particularly the more direct behaviours like total, brutal honesty that can make others feel uncomfortable. 

 

Inevitably these misunderstandings are caused by ignorance to the "problem" and maybe a little bit of something you are not used to.  Now I have no problem with people being ignorant to what Asperger's is and in being able to recognise it - sometimes this is unavoidable and it is impossible to walk around diagnosing everyone and having full or partial knowledge on every condition known to man.  People, as well, are concerned with their own lives and what affects them and largely that is ok.  On the whole most people are open to learning about differences.  The kind of ignorance, however, that I do have a problem with is when people who are informed of diagnosis and maybe information on how it affects you choose that instead of being supportive or 'accepting but inactive' to take ignorance to a new level by applying judgement and basically bitching about the way you are - because you struggle to be social.  When my actions are not harmless and to be in these environments is difficult for me, and they know that, I find that distasteful and hard to accept.  You wouldn't trip a person on crutches so why would you make an already uncomfortable social experience worse for someone with Asperger's or autism?  Just because they are not like you?

 

Of course the other side of the coin are the misunderstandings about the rest of the world and other people that Aspies make.  We try very hard to fit in or adjust to a world that doesn't suit us that well when really it is and should be perfectly fine for us to just be ourselves.  I hope that one day I won't need to explain my behaviours and I will certainly never apologise for them just because I seem a little different...