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Tuesday, 7 April 2015

PREPARATIONS , BIRTHDAYS AND COMIC CONS

I am trying to improve the blog so that as well as detailing my life, trials and tribulations being an amputee and in a wheelchair, but also as a source of information, help and advice.

I would like to think that if just one person found an answer to a question or reassurance that life goes on and they don't need to think of themselves as a burden on family then  I have done something right.

We are coming to the end of our first year on University campus but my 2nd year of a 4 year extended degree in Psychology. It has had its ups and downs but has definitely been an experience that am glad I had and looking forward to next year.

The support has been brilliant from Student Finance, the disability team at University and from the staff themselves. But we are now coming up to exam time. eeek ! But do not fear, every thing has been put in place for me to succeed , well as far as not worrying about access etc I still have to sit and pass the damn things.

I have received my own timetable, been given extra time to complete exams a long with a separate room and invigilator, PC and some one to scribe for me if needed. This is brilliant as it takes off any added worry or pressure that this could have caused for me. Now just need to try and stay calm and sit the exams in May. Wish me luck.

Last month I took part in a number of things after making a promise to myself to have as many new experiences as possible. Never let anyone tell you you cannot do something because you are disabled or in a wheelchair.

First off I took place in raising money for Student Minds through a group at university called Thinking Ahead.  This involved doing a couple of radio interviews with Sun FM. I set a target of  raising  £100 , once reached then I would shave my head.Well as you can see from the photo the target was not just reached but smashed with a grand total of approx £182 raised ! The head shave took place in The Prospect building at University where we offered people the chance to take a chunk of hair for a donation. After an hour the head was shaved.

If you wish to donate the link is https://mydonate.bt.com/fundraisers/jenniferclark1

Thinking Ahead are on Facebook https://www.facebook.com/thinkingaheadsunderland?fref=ts

We also celebrated two birthdays in the house. Toyah turned five and Eden turned nine. Unfortunately did not make Toyah's birthday party due to ill health , but from all reports it was a success and Elsa stole the show.

Eden's was held at the Sandcastle Pub in there fun house. Access for myself was fine with no issues being able to get in or out of the building or the fun house. The children all had a great time and what was even better was there was no mess for me to clean up. So a win win situation.

My other big outing during March was to Newcastle Comic Con which was organised by Showmasters. We bought Early bird tickets for both the Saturday and Sunday. We all got dressed up and on the Saturday I went as Maleficent.
 The attendants on the car park where helpful and checked the blue badge before directing us to disabled parking then informed us that it was free. Bouns ! Access to the building was on the level and no issues getting in . Although after the event I found out that on production of my DLA letter and Davids Carers letter he could have got in for free. The website does not state this any where and having emailed them several times about other things they are really bad at replying. As yet am still waiting for reply's on my questions !

The foyer was not crowded and no one give me a second look, well to be fair with all the Green Arrows, Storm Troopers , Darth Vader's etc I guess I wouldn't.

Being honest I was concerned about how things would work for me accessing stalls , autographs and photo shoots. But apart from the odd hiccup it was nothing to worry about and there was other people with wheelchairs etc present as well.

Showmasters had handled things really well considering how badly things could have gone and I was impressed. It made my first Comic Con very enjoyable and wanting me to do more. The staff where helpful regarding access to signing and  the photo ops and the stars themselves went out of their way to make sure I got the same opportunity as the other fans. Finding the disabled toilets at the venue proved a challenge

so ended up using the normal toilets and getting out of the wheelchair to use the cubicle. Not great if that is not an option. Getting around was slow as the venue was not large enough for what they had in there and the main worry was Anna crashing me into stalls, autograph tables (which she did twice) and taking peoples ankles out. It also made shopping and looking at the stalls very difficult. But we waited until it had cleared out a bit by 4 pm and accessing the stalls at that point and being able to get around was fine, much easier. If you don't like crowds or being hemmed in with the threat of going into some one or them falling on you I would  wait until it has quieted down for the shopping.

The only problem with that is that the traders bring limited stock with them so you may miss the chance of getting that certain something.

Unfortunately due to the long day and excitement my fibro flared up and stopped me from going on the Sunday. But I must have made such an impression as Garret Wang ( ensign Kim from voyager) saw Anna and asked where I was .....not sure if that was good or not as not certain whether it meant I made a good impression or the wrong type of impression !


So something I want to try again. Thinking about heading down to London Comic Con at the Olympia, Again not certain of their access at the venue for wheelchair users as waiting on Showmasters replying to my email. But lets see what happens. Hotels are proving  difficult as a couple of them that are near the exhibition center are  not disabled accessible, nor  do they have accessible bathrooms.

Transport is also proving an issue as we are trying not to take the car due to the long drive and the price of parking. We are trying to stay as near as possible so we don't have the nightmare of trying to access public transport  such as the tube !
Also off down to Manchester in May with Anna as  she is going to see Tyler Oakley???? Which means we are taking her down and having an over night stop down there to do some shopping. So this should also prove to be an interesting experience. I have to admit these two next trips will be very much taking me out of my comfort zone and I have many concerns especially about how things will work for access, transport and accommodation.


Another thing I am trying to put into place is a fundraising site called The Psych Twins. This is to raise money and awareness for local North East Charities. In October we are going to be holding a Monster Masquerade ball to raise funds for Sunderland Carers Center. We have a comedian and burlesque act . meal. raffell and disco all being held at the Stadium of Light. We have Johnny Depp's official stand in Simon Newton attending as well as a special guest to be announced nearer the time.

https://www.facebook.com/psychtwinsfundraising?ref=hl

But on top of this I am currently carrying out research on services pre and post op for amputees .  I believe that not enough is being done with regards to advice, support and therapy.
Once the research has been carried out my colleague and I are hoping to set up a center where we will be able to provide this along with a web page containing advice and on line or telephone counselling.

If you can spare five minutes and are an amputee please follow the link and complete the survey.

https://surveyplanet.com/5509dfbe1945880c2c5b4701

If you do need to talk , advice or concerns you can contact me through twitter or Facebook

https://www.facebook.com/theamputeediaries

https://twitter.com/greebo89



Thursday, 12 March 2015

TIME GOES SO QUICK....

So Annabelle 16th birthday has came and gone already. Michael is coming up twenty one in less then a week and Eden ( my second eldest daughter ), turns nine the day after Mikey.

As well as getting crowned in Disney we took her for a meal in town. A restaurant called D'Aqua in Sunderland.

Now this restaurant does not have disabled access, in fact there is quiet a steep set of steps at the front of the premises. However upon ringing them they helped to solve the problem and told me that there would be no issues for me to use the kitchen access at the back of the building as it was ramped with one small step to negotiate,

The staff and owners bent over backwards for myself and to accommodate the wheelchair and where fantastic with the little ones as well. Nothing was too much trouble for them and they made the children feel welcome. even thought it is what I would class as a up market/ chic restaurant. As for myself I felt very comfortable and not once did they make me feel as if I was an inconvenience ! Bravo ! unfortunately there are not many places around where they bother to take into account your whole experience including how you feel and make you feel welcome.

So if you are looking for somewhere a little different and that little bit special I would defiantly give this place a go.

If you do have mobility issues like myself then do ring them They are very accommodating (within reason of course), and are more then happy to help if they can, The prices where good and the food quality was out of this world. My kids can be fussy eaters especially Tyler as he has sensory ASD, but they left nothing and even asked for more.
 The cake we had made for her by Bella Sweet delights, I will put the link for both the restaurant and Bella at the end of this blog should you be interested.

The limb center meeting about the bleeding stumps and coldness of the legs went better then expected. They are sending me for a scan of my legs as although they have a good pulse they could be a narrowing of the arteries or a blockage which is causing the issue.

This has had to be referred from the GPs  so as yet still waiting on an appointment.
The kitchen is now looking more like a kitchen. We finally got a sink back and cupboards to put things away. Still waiting on flooring but we do have the holes fixed with ply wood over the top, An extractor fan and tilling still need to be done so we can then decorate but still missing skirting boards.

This has now been on going for  6 or 7 weeks now so starting to get a little sick and tired of it all.

The last thing I want to mention is help for anyone who might be looking or thinking of going back to work.

Don't think that there is no help out there as if you need support, help with your travel needs or specialist equipment then it is available through Access to Work.

As well as this there is a little known about incentive for employers to take you on as well. There are funds available for the prospective employer to have adaptations done at no expense to them as well as money for taking you on. There is no cost to the employer for any help or equipment supplied. This can include things like chairs, desks or wrist rests and many more things.


Next time I will be reviewing the services used for Toyahs birthday, my charity head shave, Sun FM interview and help being put in place for the exams (hopefully ).

I would love feed back on this blog so please feel free to share and comment and if there is anything in particular you would like me to look into or have a question about then please let me know.

On a lighter note..when moving please remember to take the one break off you have put on as you will end up going round in circles..just like I did because I forgot !

https://www.facebook.com/pages/Bellas-sweet-delights/619275984859630?fref=ts

http://www.dacqua.co.uk/

https://www.facebook.com/pages/DAcqua-Restaurant-and-Bar/158809227587465?fref=ts

https://www.gov.uk/access-to-work/overview








Monday, 16 February 2015

ITS BEEN A WHILE...MISS ME?


First off my apologies for not submitting anything for a long time.

A lot has happened in 6 months. Started university in Sunderland and although some days are better then others am managing alright for the most part. The Reg Vardy building has a few issues in regards to accessing the rooms for seminars and the lift has been off a few times in the last couple of month , but over all not too bad, I have seen worse . The prospect building where the bulk of the lectures are held and the library is housed is great and very easy to access. I have a support worker to push me around with me not being able to self propel due to the fibromyalgia and to take notes if things get too bad, but the lecturers have been extremely helpful. Not doing too bad on the work side of things and coming up to exam season soon so preparing for that. Busy finishing up the last of the essays and reports. Can't believe the time has gone so quickly.

Went back to Florida again in October and what a brilliant time. Flew with Thompson and I have to say their attention to detail was outstanding.

The help we received with the wheelchair and getting the help I needed to get on and off the flight was brilliant. We stayed in a Finding Nemo suite in the Art of Animation and although it was budget it was a lovely resort, very accessible for me including the pool area. They have accessible rooms with roll in showers which where fantastic.  We used Tiffany Town cars to get around outside the park and again great when it came to dealing with me and the wheelchair.



No matter where I went, shopping, Universal or the Disney parks the staff where all very helpful and it never felt that me or my needs where an inconvenience. I have to admit the first time I thought of going on holiday after the amputation never mind abroad it was terrifying ! Then to go abroad on a 9 hour flight, well lets just say I thought I was insane to do it with 5 kids in tow, but if you are willing to take a leap of faith it is worth it. I experienced more this time and made a point of going on more rides and taking part in more photo opportunity's which is exactly what I did.  To be honest it is a shame that places in the UK don't take a leaf out of Disney, Universal and Thompson book with regards to how they treat disabled people and children with disability's

Tyler was never left out of anything either due to his ASD. When the ques where too much for him and there was issue with sensory overload due to his ASD they give us a card . You went to some one on the ride showed them the card and they would give you a time to return for that ride FREE. Now this might sound familiar and so it should. It is the same principle as the fast pass system used in this country at places such as Alton Towers and Thorpe park, but these you have to pay for on top of your admission ticket. In the UK you are made to feel like an inconvenience in these places or that you are making people go out of their way to accommodate you. This in turn can make you feel like you don't want to take part or get in the way, even when you are like me and have a hide like a rhino.

November and December passed with a few issues concerning my health and Tyler's school.

A small run in with a teacher who was teaching back in the day when children being "too clever for their own good" or the attitude of no such thing as ADHD just naughty children applied. Tyler and him had a few run inns just before Christmas which caused Tyler's ASD to escalate. This accumulated in a suggestion being made that he should go to a inclusion school as he would never pass his STATS due to being uncontrollable , (this was news to us as Tyler has never had any issues like this at school before) and things happening like Tyler walking out of class and getting into arguments with the teacher. (mind you why a grown man is arguing with a ten year old to start with never mind a ten year old with ASD !!). After a very interesting meeting where it was pointed out that said teacher shouting at Tyler all the time was the same as him physically hitting him.,(Tyler's ASD is sensory so loud noises cause him pain), and asking why things that had been agreed to be put in place had not been implemented yet, making sure things that had been implemented where still being carried out I requested for him to see a Educational Psychologist.

After various tests it turns out that Tyler is a gifted boy and there should be no reason why he wont pass is STATS, go to comprehensive in top sets and fly through University ! Said teacher is retiring this year.
So Christmas came and went and so did my kitchen. After a hole appearing in the floor it was deemed too dangerous for me to use the kitchen with the wheelchair. So I started trying to cook meals alternating between the kitchen and taking rests in my wheelchair that I had parked at the entrance to the kitchen. This did not work well. Then the real problems started.

Now am used to my left stump splitting, after checking with the limb center I was told that this was nothing to worry about as it was the way the scar was and it was just rubbing in the liner. But now my right stump has split and there is no reason , nothing to rub and it has split along my scar. After a run around with the NHS and being bounced from a NHS direct call center , to a paramedic, to the GP, to a skin specialist who turned out to be a district nurse and finally to the limb center, I have ended up on antibiotics and a emergency appointment at the Limb center. However this has unfortunately lead to nearly two weeks off from University,

 So now you are all caught up.....just about. There is some interesting news on the horizon. A colleague and me are going to be doing some research into therapy pre and post op in the hope to push this through into a regional center to provide support, advice and therapy for people  not just with amputations but with all disability's. I am also looking at expanding the use of this blog into assessing venues, events, hotels, pubs, cinemas, clubs etc for the ease of use, treatment and helpfulness. AS well as this we are looking to set up a website and information leaflet. Watch this space !!

Next blog I will let you know how my daughters 16th went and how the restaurant helped me to make the most of the night with my family. I have two birthdays coming up at different venues in Sunderland as well as Newcastle Film and Comic Con at the Newcastle Arena, which I will be reviewing as well, hope fully am looking to get some input from said venues and events as well.

 Hopefully though my experience of taking chances like going back into full time education, starting my own business, going out to work etc I can encourage and help other people to do the same. Showing that just because you have had a amputation, or you are wheelchair bound or in fact have any kind of disability, even if you know some one ,a family member or friend maybe even your child who has a disability  that effects them, there is places you can go, things to do and experiences to enjoy.

Live life to the max. Never give up.


Useful links from this blog:




http://www.tiffanytowncar.com/about.html link to the town car service used in Florida.



http://www.thomson.co.uk/gsa/gsa.html?q=disability&site=default_collection&client=production_frontend_new&proxystylesheet=production_frontend_new&output=xml_no_dtd&toySiteSearch=Go  -  Link to FAQ about issues concerning disability's on Thompson holidays and flights

http://sls.sunderland.ac.uk/disability/dsa/ - Link to Disability services at Sunderland University.