Dyspraxic Adult Surviving in a Non-Dyspraxic World

Saturday 18 February 2017

How the Dyspraxia Foundation Adult Advisory Panel Works

The Purpose of this blog is to promote The Dyspraxia Foundation E book' "Dyspraxic Adults Surviving in a NonDyspraxic World" self help book for dyspraxic adults. All proceeds go to the Dyspraxia Foundation Adult support groups. Available on Amazon for £9.99

Hello everyone I haven’t done my blog for a bit. As I could hardly see what I was typing. I’ve had one cataract removed from my right eye and I can see a lot better now and will be able to see even more clearly when the other eye is done. Already I can get away with going out without my specks. But If I indulge in 80s handbag dancing, during a night out with friends, I could still trip over my clutch bag for different reasons than not seeing past my nose.

I digress in typical Dyspraxic style. A member of the Facebook Group Dyspraxic Adults Surviving in a Non Dyspraxic World asked me to write a blog about how the Dyspraxia Foundation Adult Advisory Panel Works. The Facebook group was used to consult adults about the eBook with the same title and the book has now sold over 800 copies.

So here goes:

This is how the DF Adult Advisory Panel Works.

The Dyspraxia Foundation Adult Advisory panel consists of 12 members are chosen by the Adult Advisor to sit on the panel. they devise information sheets on dyspraxia, employment a Diagnosis Education and other Adult related subjects and update leaflets. I'm working on a bullying in the workplace leaflet. everything we do has to be submitted and approved by my DF Trustee colleagues before it is finalised We also organise adult conferences with support from the DF Admin team.. We are hoping to have a quarterly e Newspaper for Adults. The panel are mainly Dyspraxic adults who have experience in issues such as education, employment, psychology, welfare rights and neurodiversity. Peter Keegan the previous Adult Advisor had already set up a panel. I already knew the original panel members, as I used to be their Education and Research Advisor and helped set up adult support groups, so I had already worked with existing panel members. I’m not into power trips or making changes for just the sake of it. My first task was to find out which existing members wanted to stay on the panel. The remaining panel members are Richard Todd (DF Trustee, Employment Advisor), Peter Keegan (Health & late Diagnosis), Maxine Francis Roper ( DF Trustee & Media and Publicity), Robert Hopkins (Welfare Rights). New Panel Members are Yvonne Lee (former be a DF Trustee and has experience in Social Welfare and the media), Mary Morris (co-editor of our Dyspraxia book who will be editing an adult E magazine), ilona Singer (Clinical Psychologist), Lisa McCarthy (Former Dyspraxia Foundation Helpline Advisor), Monique Craine (Neurodiversity Advisor). I am still waiting to hear if Jo Todd wants to be our Education Advisor.

As we have panel members from all over the UK, in Manchester, Liverpool, Wrexham, London Cheltenham and South Wales. it would cost a fortune in travel expenses and be very time consuming to meet up face to face. I decided that we would have monthly meetings via Skype.

We had our First Skype meeting in early December. Since the DF lost Funding for the Adult Advice Helpline I have received about 80 emails. The main topic for advice was adult diagnosis. It is also a huge issue amongst adults on facebook groups and in Manchester. We diced that asking for a NHS Adult Diagnostic Pathway was our priority. There are not many places to refer adults to so this would mean that a pathway would be achieved via local GPs.

Ilona Singer and Victoria Biggs worked on a letter to send to employers regarding a job descriptions and person specifications insisting that employees need a car or driving licence even though it is not necessary to be able to do the job. However the other Trustees have not approved it as they majority thought it was a campaigning letter which is against the DFs constitution rather than a fact sheet. I will pass it onto the Coalition of Disabled People to be used for all disabled people who are discriminated against.

This week Sally Payne a DF Trustee consulted the Panel about Movement Matters new definition of Dyspraxia & DCD , we are hoping that there will be more focus on the other issues besides co-ordination that affects adults daily lives.

Im going to the dyspraxia Foundation Conference In Doncaster Friday March the 3^rd and I am staying at the Premier Inn Lakeside Hotel on the Thursday night, so I hope to see you at the conference.

Monday 2 January 2017

Reflections for 2016 & resolutions for 2017

Reflections for 2016 & resolutions for 2017

Happy New Year everyone!

2016 has been a mixed year for me personally but not a disastrous one. I haven’t posted a blog since October when I came back from my 2^nd holiday that year in Pefkos. I was looking for work but I’m still not in paid work but have found plenty to keep me busy. I didn’t think I had anything worthwhile to share with you and although I’m not depressed I got into a procrastinating, apathetic rut. Both things can be caused both by unemployment and dyspraxia without structure.

Pefkos June 2016

I started the year by having 2 part time jobs as well as being responsible for supporting my Mum who has dementia to stay in her own home. I then persuaded my Mum that she would be happier moving to an independence flat at Heathlands, a Jewish old peoples Village In Prestwich. Meanwhile the funding ended for both Jobs and I had to sign on. The only good thing about that was it gave me more time and was less stressful when I organised my Mums move for her than If was managing 2 jobs at the same time. I have dyspraxia and this can lead to organised chaos. But, I used to live in rented accommodation so I have moved home several times so I have developed organisational and coping strategies with moving house. So her move went relatively smoothly. My mum tells me she is really happy now. She is glad she doesn’t have to cook and clean her house anymore. The staff say she walks around with a big smile on her face. However, she is fed up at the moment because the Noro Virus hit Heathlands just before Christmas/Channukah and she has been asked to stay in her room and people are not encouraged to visit her because it has hit the unit where she lives. But this won’t last forever and there will be the usual entertainment and activities will resume soon to stimulate her and I will be able to visit her soon.


Mum & I in Bellinis

I have been elected Adult Adviser/ representative for the Dyspraxia Foundation and we had our first Skype Adult Advisory meeting early last month. My next post will be about how the panel and what we do. We were struggling with funding and had a finding drive and We have reached our funding target of £20,000 to keep the charity running. Im getting lots of email queries recently which I assume is due to the Dyspraxia Helpline losing its funding, but it still exists on a smaller scale.

The posts with the most views have been my post about my first Pefkos holiday in early June with 1740 views. Second my post on becoming the Dyspraxia Foundation Adult Advisor with 1290 views. Although I got over a thousand views on why Dyspraxic Adults should join the DF. I obviously wasn’t persuasive enough as it had little impact on increasing their membership. would like to thank everyone for viewing my blog

Just before New Year after a break from moderating the Group Dyspraxic Adults Surviving in A Non Dyspraxic World which originally was emancipatory research for the ebook I was decided to come back as a moderator. This is more time consuming than being the Adult Advisor. I’m hoping to sort out a more consistent approach to responding to posts with the other moderators and I would like to thank them for all their hard work. Hopefully by the time I get another paid job I will be able to delegate them to run the group without me having to moderate.

For the past two years I have been struggling with blurred vision caused by Keratoconus and Cataracts and due to a shortage of eye surgeons I have had to wait over a year to have it sorted out. I now need a cataract operation, for both eyes. I’m having my right eye done first on 24^th January and the left one done some time after that.

I have been out of work since August, It usually takes me about 3 months to find another job. I’m concerned that I’m into my 5^thmonth of unemployment and I’ve been summoned to my local job club to get help looking for work. I do hope its not like the Job club on the Leauge of Gentlemen. Here is a link about Pauline who is their Job Club adviser.

I could have been doing classroom assistant work at a SEN School but I’d need eyes in the back of my head but need my eyes sorting first I have applied for a job as Peer Mentor for a Disabled Peoples Led Organisation. This job involves helping disabled people and people with long term health conditions to set up support groups face to face and on social media. I have plenty of experience in that so hopefully I will get short listed but I’ve been at job interviews before in community development jobs but not got the job but hopefully I will get this one.

So my new year resolutions are to:

· Get a job so that can afford to go back to Pefkos or Lindos in Rhodes at least once this year.

balance my work life both voluntary and future paid work with my leisure time more
Continue doing my stand up
Get repairs done on my house
Write my blog at least once a month

Monday 10 October 2016

A Dyspraxic Abroad Part 3- My second Holiday in Pefkos

Yammas & La Chaim from Lindos

It has been a few weeks since I did my last blog. The novelty of not having to get up to work had worn off and I was feeling quite low so decided that there was nothing worth blogging about. So I was really glad that I decided that following my redundancy not to cancel my second holiday in Pefkos (on October the 1^st). The Last one was in June

Firstly as I am the Adult Advisor for the Dyspraxia Foundation and this week from October 10^th to the 16^th it is dyspraxia awareness week I will first talk about how my dyspraxia affects me individually and the coping strategies I use as a Dyspraxic single traveller.

Somehow this makes people think I’m brave doing it on my own and as dyspraxia is a hidden disability some people think this makes me even braver. Now if I’d rescued one of the well fed & looked after Cats in Pefkos from a burning building I would consider myself brave and be deserving of a medal. However hidden disability or not there is nothing brave about stuffing my face with delicious Greek food, getting pleasantly squiffy on wine & cocktails and sunbathing on St Thomas & Lee Beaches. I have a poor sense of direction but didn’t find it hard to get on the right plane or find my way round Pefkos & Lindos and seeing that I used to do travel training for a living Nor is wondering round the narrow cobbled streets of Lindos, on my own worthy of that kind of praise.

Delicious food of Pefkos

Going back onto the subject of dyspraxia and how it affects me individually I have difficulties with organisation, co-ordination and short term memory. So if I joined I n Greek dancing unless one knew what to look for, my un-co-ordinated attempts to dance the same as everyone else would give people the assumption I had been downing too much Metaxa and I’m a bit awkward with getting in & out of boats in a dignified manner.

This time I nearly left the necklace I had to take at Manchester Airport security behind but the security man spotted it and unlike last time it was much more relaxing and less stressful as I checked in earlier this time just in case they changed the times again. Transferring to Pefkos went smoothly and The Marianthi studios were the first drop off point. There was a bit of confusion at reception about giving out apartment keys which but this was eventually sorted.

The apparent was typical of Greek apartments and similar to my last one bout in a much more central I found there was no kettle in my apartment but was given a brand new one quickly and when the cooker ring didn’t work when I wanted to boil some eggs for packed lunches later in the week to keep within my budget it was sorted very quickly. The plug sockets weren’t well planned. I had to use chairs to charge up my phone and boil a kettle. There was a toaster there but I had fruit 0 % fat yoghurt, granola and honey for breakfast so I didn’t have to do a risk assessment for making toast. The apartment walls were very thin and next door there was an extended Cockney family that could have been out of Eastenders, who had no self awareness about how loud they were, so I decided to use my music and headphones rather than falling out with them. It is just as well as I chatted to loudest member of the family when he was on his balcony next to mine and he turned out to be a nice person.

Although I’m disorganised I have developed strategies with packing by making a packing list and ticking everything off in my case. I had been to Pefkos in June so convinced myself that I didn’t need to refer to my list this time and I would defiantly pack less than in June as I took too much clothes last time. Now I don’t know if watching Shirley Valentine on my Kindle Fire on the outward flight, gave me a Friedan slip, but I realised I had forgot to pack my nightie. Never mind it could be worse at east I’d remembered my knickers. I ended up buying an extra large man’s -shirt as a nightie substitute as I have a thing about sleeping in the nuddy in case there is a fire. I also forgot my mascara and nail polish remover pads. I thought I’d left my jewellery at home but found them in my suitcase on my last night. I left my phone and sunhat on a boat trip but got them back before it drove off.

The weather was warm without being unbearable and I didn’t need a cardigan in the evening. The highlight of my holiday was when Captain Nickolas asked me if I wanted to go on his boat trip so I though why not. I know what you are all thinking! but he is nothing like Tom Conti he is a respectable family man, who’s family ran the Zig Zag cocktail bar. I met Anne who was also a solo traveller., We had the boat to ourselves. I can tell you that the boat trip was well worth the 20 Euros and we stopped at a tavern in St Pauls Bay and had deliciously fresh Calamari and grilled seabass. I met with Anne that evening to have a drink with her at Zig Zag, that night but she was flying home the next day. and we may meet up next year as holiday buddies.

Captain Nikolas Boat Trip

I had a very special Rosh Ha Shanna (Jewish new year) New Year’s Eve in Pefkos so ate apple honey yogurt and honey rum to celebrate and I had dinner Lindos. I didn’t want to go away the next week during dyspraxia awareness week. It is just as well as some flights were cancelled due to the Greek Air traffic control strike. I was lucky that our Departure flight was only delayed by 45 minutes and it wasn’t affected by the strike.

I felt really guilty about going on holiday when I was unemployed and wondered if going back to the same place was a good thing. I am very glad I did as I had an even better holiday on Pefkos than I did in June., and when I get a job and have saved enough money I will be back in 2017.