Dyspraxic Adult Surviving in a Non-Dyspraxic World

Sunday, 17 July 2016

A Hectic first week as Dyspraxia Foundation Adult Advisor

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

Why Dyspraxic Adults need to bear with me until August

My first week as Adult Advisor has been really hectic. It has been one of those weeks where it has been really busy, especially in my personal life and at work, then there have been a DF Trustees issue that required my urgent response, due to confidentiality I cannot disclose it yet, until it has been discussed further.

Personal Life

Some of you may know that I am responsible for Mum who has the middle stages of Dementia, she is still living in her own home with support. Mum can still make her own decisions. but She finds it difficult to manage her finances. She is now finding living in her home more of a struggle. I am her power of Attorney over her finances with my Second Cousin Ian who has more idea of assets than I have. I feel a bit useless as a daughter as my dyspraxia means I cannot drive down to see her except on a Sunday as its hard to get to her house from work by public transport. I’m sure Ian thinks I use my dyspraxia as an excuse for not supporting my mum enough, but if I get too stressed I can’t function to hold down my 2 part time jobs.

Just before the DF AGM and Conference I looked at my junk mail to see if anything important was hiding in there. I came across an email that had been there nearly a week offering my Mum an I dependence flat at Heathlands a Jewish old people village in Prestwich. When my Grandma went into a home it was different it was a bedroom with a sink in it. It was realised that this can cause deterioration, institutionalisation and learned helplessness. Now if an older person still has some level of independence they get a studio flat with a support package according to their needs. Heathlands independence unit Moorview is upstairs. On the lower floors have units for older people who need more care to varying degrees. On the ground floor there is an activity room, a synagogue/ entertainment hall supported by the local community, a restaurant that serves 3 meals a day, morning coffee and afternoon tea. A there is also a café that sells snacks and a hairdressers. The Flat she wants is beautiful and overlooks reception so she can see who’s coming and going and it overlooks a stunning communal garden.[JT1]

Heathlands Village

I wouldn’t mind living there myself. I’m not sure due to being severely Dyspraxic, if anyone would be able to tell if I had the early stages of dementia or not. To some degree I do similar things to my mum. I forget to close windows before I go out. I lose my possession, I putnon edible things in the fridge & not remember how they got there. I forget people’s names or get them wrong even when I know them. But these things only happen when I’m stressed, overloaded or don’t get enough sleep. To be honest my mum house is always spotless. If a social worker assessed me on how untidy my house was as to see if I was coping, I think I’d get more points for not coping than my mum ever would.

I digress. My Mum who adamantly refused 2 years ago to even look at a flat, viewed the flat. A synagogue volunteer took her down to look at it, as it was within a timescale before it got offered to someone else and I had urgent commitments at work, that I will explain later on. I went with Ian this Thursday the only time that was mutually suitable for Ian, myself and my Mums social worker to look at my Mum’s flat Which happened to be on my busiest day at work when my Open Awards verification had to be completed.. My cousin had to sort out if Mum could afford it or not in a very short timescale before he went on holiday. I am very grateful to Ian and I can’t thank him enough and I have no idea how I can return the favour. She now wants to move in straightaway and get very cross with me when I tell her nothing has been signed yet and I can’t help her until August, when I will only be working 2 days a week, so I will be less stressed and can sort out her move.

Work

I have 2 jobs based at the Trafford Centre for Independent Living in Sale. My first Job is with Future Visions a Self-Advocacy Charity for people with learning disabilities. The second for Trafford CIL as a Travel Training Project Co-ordinator where I train & support volunteers of varying ability to travel train people with Learning Disabilities. My job role has changed and I’m now the internal Verifier. Future Visions has put on courses accredited by Open Awards. I am very lucky that Urszula is a very competent Tutor and assessor so verifying her courses has been reasonably easy. But verifying involves cross referencing assessment criteria which are numbered and cross referenced. It involves checking that assessment criteria, learner feedback and achievement decisions have been completed in individual files. There are 3 courses with 3-4 units and about 10 adult learners. I this all had to be finished in originally about 2 days before the external assessor visited us.

Luckily my line manager suggested I do the travel training report for my second job next week . I could concentrate on verification this week which gave me an extra day. Due to a team effort Urszula, John and I got a glowing report and we I can now verify internally without an external verifier.

Adult Advisor

While all this was going on, Vee from a dyspraxic Adult whom I met at the conference phoned me with a funding Idea so I have arranged to see him next month. I am staying at my cousin Jonathan’s on the Thursday night as the Trustees Away Day is on a Friday, near Heathrow Airport and would take 4 ½ hours travelling there and back in one day. I have maximised my train fare by arranging some appointments on the Thursday. I have a meeting with Michelle Lee the DFs Chairperson & Eleanor Howes Chief Executive Officer, to discuss what my role involves as Adult Advisor. After this I have made an appointment with Vee so he can explain his funding idea.

When I came home from work on Friday a huge wad of Trustee document were waiting for me to read so I looked at them on Saturday & filled in the relevant forms. I have also received several emails from Trustees and information passed on by Peter Keegan the previous Adult Advisor. I was not going to reply properly until the weekend so I could process the information when I’m less stressed, but a whole thread of a very important issue came up that I needed to respond to as soon as it had been brought to my attention. So Now you know why I have asked all Dyspraxic adults to bear with me until August.

In order to recharge my batteries, I have chilled out this weekend so I’m not too overloaded to start the travel training project report on Monday.

I think when all things are considered I have coped really well with such an eventful week. I have decided to treat myself for Rosh Ha Shana on October 1st (Jewish New Year) by booking another week in Pefkos (back just in time for Dyspraxia Awareness week on October 9th), before my paid working hours drop. All I need to do is save up for holiday spending money.

[JT1]

Sunday, 10 July 2016

Dyspraxia Foundation Adult Advisor – I’m very proud of my new role.

Yesterday I attended the Dyspraxia Foundation AGM and Conference- ‘Back to Basics’. I woke up at 4am but didn’t have to get up until 5am to catch the 6:55 Virgin Train to London Euston. Once I’m awake I’m awake, so I got up.

I had prepared my bag for the night before and had everything ready. I had time to wash my hair and put my make up on without rushing I even had my breakfast prepared, it was the famous Slimming Word overnight, oats, fruit and 0% fat yoghurt ready in the fridge an airtight bowl. For snacking I brought more fruit and hard boiled eggs and had remembered to bring them and not leave them sitting in the fridge. Rushing makes me more stressed and therefore more Dyspraxic. I arrived at Piccadilly Station in good time to catch my train.

I sat on the train congratulating myself for being so organised. However, when the Virgin Train ticket inspector looked at my tickets, I had brought every bit of what looked like a ticket except the actual ticket, so I had to buy another one. I thought I was being fair to the DF by booking a Saturday Day Saver and was saving them a few quid. Hopefully I will be able to get my unused ticket refunded (if I find it in my drawer).

The Day Saver included an underground day pass to get to the Norton Rose Conference Centre. This avoids the stress of having to queue up and the rush hour and fumble about, remembering which zone the ticket is in, while impatient people tut behind me, making me feel more flustered.

I joined the queue from hell to get my underground ticket. I had been to the Norton Rose Conference centre for 2 previous DF Conferences so I was convinced that I knew the way so I didn’t print out directions for the underground. My Mind went blanc, I vaguely remembered that it was direct on the Northern line but got a bit disorientated as my eyesight has deteriorated since last year. I was just about to look up the route, when Peter Keegen the former Adult Advisor tapped me on the shoulder and rescued a somewhat Dyspraxic, disorientated, damsel in distress. I told him I thought it was direct on the Northern Line but he was adamant that it wasn’t. So After 3 changes on the Underground a very stressed and flustered looking Peter arrived with me at the DF Conference.

When we walked into the conference, I met Monique Craine an Autistic/ Neurodivergent speaker at the conference in the flesh for the first time rather than talking on the phone or Facebook. There was just enough time to say “Hello” to everyone at the DF, go to the loo and get a brew before the conference started.

Selfie of Janet Taylor

Peter Keegan stood down as Adult rep and I took over the role as Adult Advisor/ Representative. I am very proud to take on this role and somewhat apprehensive that so many people have such faith in me and very high expectations of what I can achieve. The DF has limited resources but I will do my best. (Self-doubt is characteristic of being Jewish and Dyspraxic so I get a double whammy LOL). I will be facilitating an Adult Advisory Panel and representing dyspraxic adults at Trustee meetings (Away day in August, my first meeting in September).

At lunch time I only just managed to grab a plate of sandwiches which I didn’t count the syns as I’m below my target weight but they would have been quite high. If I hadn’t been called into a trustees meeting to be introduced to everyone. I would have had second helpings so it’s just as well.

I was given lots of information about my responsibilities. To be honest I did feel overloaded and it felt a lot like a first day in a new job. Eleanor Howes the Chief Executive of the DF and Michelle Lee the Chairperson of the DF had picked up on this so in August I have been invited to meet up with them in London to have my responsibilities explained more fully to me. I can also discuss my support needs in my role. Then I can explain to you all what my role is and some of the ideas I am going to bring to the DF Trustees, in September. By 3pm I was feeling very tired and overwhelmed by it all so and had wished I had used Monique’s relaxation download on the way to the conference. I heard the magic word “cake” so I went to investigate.

The conference went really well and I met up with some lovely Dyspraxic Adults in a pub afterwards, By this time I was exhausted. I unintentionally sounded really abrupt, untactful and unapproachable. When I gave out my Manchester Adult Support group business card and said. “Oh I didn’t realise my mobile phone number was on there I didn’t want people to have it so that they phone me at work”. Luckily I was with a group of dyspraxics so hopefully they will understand I wasn’t deliberately being stand-offish.

My Journey home was quite smooth and I went to Euston on a direct line and I managed to block out about 3 different families with very loud toddlers and babies by listening to music on my Kindle Fire. My new noise cancelling headphones were very effective and ensured that my journey to Manchester was very relaxing. I arrived home at about 10pm. I was exhausted so for future London visits for my new role. I will be asking my Cousin Jonathan in Golders Green to put me up for the night instead of doing it all in one day. Luckily I have a day to myself now to recharge my batteries.

Sunday, 3 July 2016

I’m Dyspraxic and I am proud of who I am

Please note that soon I will be voted in as Adult Advisor for the Dyspraxia Foundation, this post is not the opinion of the DF but my own personal views. Whether my influence changes their views are another matter. :-)

This blog is an attempt to explain “People First” or “Person First Language” and why I do not think this is appropriate for Dyspraxics. There are regional and international charities named “People First” who are self advocacy and peer support charities for People with Learning Disabilities. In this case I’m referring to people identifying themselves as a person with a disability rather than identifying themselves by their disability. or in other words "identity first language". For example a “Person with Dyspraxia” rather than “Dyspraxic”.

Yesterday I went to the Manchester Autism Show at Event City to represent the Dyspraxia Foundation, sell our book and to network with Autistic groups and Autistic individuals. Russell Stronach very generously gave me space for my leaflets on their Autistic UK stand. Some organisations are for “People with Autism” or who “have Autism. and others are for “Autistics”. The former organisations are usually run by parents and professionals and the latter are run by Autistics. Autistic UK argues that neurology is not and accessory like a handbag but that they are Autistic. An Identity First Autistic campaigner designed a mug which gives a clear visual explanation as to why Autistic UK prefers this term.

Neurology is not an accessory

The Dyspraxia Foundation uses the term People with dyspraxia at the moment they are a cross between parent and professional led organisation and one led by Dyspraxic Adults. This is because the Dyspraxia Foundation has an Adult Advisory panel led by a Dyspraxic Adults and the majority of the Advisory Panel are Dyspraxic Adults with varying expertise and skills. However it would be rather short-sighted to disallow non Dyspraxic Adults to share their expertise as it would be cutting of our noses to spite our faces. However they will have to have an understanding of the Social Model of Disability. The majority of the panel should be Dyspraxic Adults. I think there are about 4 Dyspraxic adults who are DF Trustees. (I will change this if there are more). I prefer to be identified as Dyspraxic as it is who I am.

The term ‘dyspraxic’ is used throughout. “Dyspraxic Adults Living in a Non-Dyspraxic World”(This is a link to Amazon) to describe us. This does not intend to medicalise us but to highlight our marginalisation from a society designed for non-dyspraxics in the same way that the term ‘disabled people’ is used to describe the way disabled people are excluded from society. It is our intention to reclaim the word ‘dyspraxic’ as something to be proud of. (Janet Taylor, Chapter 1, 2015)

Why does terminology matter?

“The medical model suggests that the disabled person is a tragic victim and uses terms such as ‘sufferer of dyspraxia’. People using this model normalise themselves using phrases such as ‘battling with dyspraxia’, ‘overcoming their dyspraxia’ (suggesting that they have somehow cured themselves.) Terms such as ‘in spite of their dyspraxia’, suggests that they can fit into a non-dyspraxic world. In social model terms they are not ‘suffering from dyspraxia’ but are ‘suffering from a lack of dyspraxia awareness’. They are not battling with their dyspraxia or overcoming their dyspraxia but battling with and overcoming disabling barriers. They are not achieving in spite of their dyspraxia, but are achieving in spite of societies’ disabling barriers.”

Many dyspraxics are unnecessarily discriminated against due to a badly designed building or environment, with bright florescent lighting in noisy environments and discriminatory attitudes and practices in institutions such as education and employment. Such barriers bar many dyspraxics from obtaining an adequate education, a job, an adequate income, and opportunities for inclusion in society”. (Janet Taylor 2015, Chapter 4)

The next step is to persuade Dyspraxic Adults why this is the preferred term and hopefully get my Dyspraxic peers to agree then pass it on to the Trustees to let them know that we prefer to be identified as being Dyspraxic.