Views of and experiences with the Dyspraxia Foundation

A place to talk about your experience of living with Dyspraxia

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Views of and experiences with the Dyspraxia Foundation

Post by Tom fod » Wed Sep 19, 2018 8:12 pm

Hi all

I'm Interested in people's experiences with the Dyspraxia Foundation (DF)

Have you had cause to call their helpline or attend an AGM or one of their other events or are part of or in some way involved in one of their local support Groups?

Are you a member or past member?

Do you feel annoyed that they are too parent/child focused?

What could they do better for adults as far as representation?


I am a member myself but other than scan reading their monthly Newsletter I have not really engaged much with them.

Since I'm lucky to be relatively mildly affected and don't feel the need to shout about my Dyspraxicness. Is mine and others adults reticence to talk openly 'part of the problem'?

Or does the vast spectrum of how we are affected make positive stories of those who are coping well make it potentially harder and more demotivating for those who are having a more difficult time with the condition?

I would quite like to attend one of their AGMs but due to cost of travel /lack of will on my part /other commitments I have not made it to one yet.
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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Thu Sep 20, 2018 6:18 am

I have been an active member intermittently since 1999.

Sadly too few adults engage with the organisation, if they did the constitution could be changed to put more focus on adults and have more actual folk with DCD on the board of trustees, SCOPE had similar difficulties - well intentioned but not meeting the needs of its largest group of potential members - adults with dyspraxia.

I am 69 - there should by now be a section dealing with the needs of older folk but there is not.

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Thu Sep 20, 2018 9:08 am

In a reply to a tweet from the DF I referenced this group - thus
"I am sorry to see DF Board/ Staff do not seem represented here (link provided)"
They replied: -
"DYSPRAXIA FOUNDATION
‏Verified account @DYSPRAXIAFDTN
Replying to @Andrew_S_Hatton

The @DYSPRAXIAFDTN is involved in many groups across social media but with little resources and manpower we are unable to have a voice on every forum. We do have dyspraxia adults on the board and our adult Rep is setting up a panel. We also hope to host day in Scotland soon.
8:24 AM - 20 Sep 2018 from Letchworth, England "
I said: -
" Replying to @DYSPRAXIAFDTN

So be it- it has been in existence since BEFORE Tue Oct 02, 2007 - & is not as old as that started by Jenny Peterson - first chair of DF ASG in 1998 which is still going - both are better for debate than Facebook or Twitter https://groups.yahoo.com/neo/groups/Dys ... ages/45282

8:38 AM - 20 Sep 2018 "
https://twitter.com/Andrew_S_Hatton/sta ... 7270278144

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Tom fod » Sat Sep 22, 2018 10:51 pm

Andrew

Thank You for your replies and for your efforts in flagging us to the DF. I have also messaged the DF about the forum in the past in the hope it could be flagged to their membership and would hopefully thus increase participation and posts here. I don't think I ever got a response. However I was recently encouraged to learn that the NHS page on Dyspraxia in Adults carries a link to this forum (no referral cash as yet so looks like my super yacht will always remain a pipe dream!)

Out of curiosity, how active/busy is the Yahoo Group?

I'm also active in some of the closed groups on Facebook myself but I do think there are some who are not fans of
FB and may be concerned about posting openly on there.

This Forum was set up in (iIrc) Jan 2006 and Dan and Pooky must take the credit for that. I came along in 2011 and probably became a moderator maybe a year or so later.

Living a significant distance from London/the Southeast and having a full time job

I've heard there is a perception within the DF that some adults may be angry about the lack of specific assistance/campaigning to help adults gain recognition/diagnosis and in some ways I sometimes wonder if official endorsement by the DF could prove counterproductive to either the Forum and/or the DF but I am cognisant of the fact and ideal that we should if possible work together since that could increase the volume of our voice.

We have quite a few visitors from outside the UK who have comparatively less recognition and support available.
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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Mon Sep 24, 2018 10:00 am

how active/busy is the Yahoo Group?
Almost moribund BUT it does have a massive searchable archive - though Yahoo Topics do not display (in my opinion) as clearly as in these "phpBB" Forums - I have been a member of several down the years.
perception within the DF that some adults may be angry about the lack of specific assistance/campaigning to help adults gain recognition/diagnosis

I agree - I am one but now DANDA has long folded DF is the best we have got AND they are better than in earlier days.

I should say WE - not THEY.

As for the International thing - yes it was ever thus - I recollect Mary Colley gave support to others from overseas - sadly she died EIGHT years ago - I still miss her greatly.

I was quite shocked a year or so ago - to discover this Forum had such a large repositry of posts - even though there are few active participants and to discover it went back over 10 years - I think I may have been a member in the past but withdrew at a time I needed to cut back, but am I very glad it is as healthy as it appears - I find it much better than Facebook - if only because the Forum providers allow users to just get on with it and do not organise things in the way facebook seems to do.
Last edited by Andrew_S_Hatton on Mon Oct 29, 2018 1:53 am, edited 1 time in total.

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Re: Views of and experiences with the Dyspraxia Foundation

Post by otis_b_flywheel » Mon Oct 01, 2018 12:16 pm

Tom fod wrote:I have also messaged the DF about the forum in the past in the hope it could be flagged to their membership and would hopefully thus increase participation and posts here.
To be fair to the Dyspraxia Foundation, when I joined they sent me a list of useful web links, one of which was to this forum. I think they do recognise the limitations of their support for adults and are embarrassed by these, but are starved of resources and not really in a position to do more. Perhaps if more adult dyspraxics joined the organisation this would help???

I'm fortunate to have the financial resources to travel to the occasional DF conference etc, but wish that others were in the same position. Living in the Highlands, the distances are crippling and I typically have to spend two nights away from home and that included my assessment in Durham - the nearest place it could be done!

I went to the AGM this year and found it moderately useful, though if I hadn't also used the time in London to visit a friend it wouldn't have been worth the expense and effort. I've been trying to get to the East Scotland meet-ups but so far have been too busy. I am, however, definitely joining that group in Perth in November and am looking forward to it.

Regards
Tim

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Lucy » Fri Oct 05, 2018 9:27 pm

I'm a bit late in replying sorry but I have quite mixed feelings about the DF. Yes they can be quite child-focused but I can see they are making a real effort to be more inclusive of their adult membership. The problem I find is that I don't really feel there is that much detail/substance to a lot of their fact sheets for adults - I have to work quite hard to figure out how their leaflet on the workplace actually relates to me, for example. Part of that is unavoidable, because of course they are generic and different industries will inevitably be very different, but I also felt a bit... I don't quite want to say patronised because that's too strong but it's the closest I can think of at the moment. But that might just be me, others may feel the materials are pitched at the right level for them - and that's always going to be tricky with such a range of ways and degrees in which people can be affected. I also feel like there was not really much there for me when I was just diagnosed as that all seemed aimed at parents/children/young adults - and I wasn't sure the rationale for the session about reasonable adjustments/disclosure at work being 16-25 at the last AGM. But there are some really interesting pieces in their journal, so that's been useful.

I'm not sure how I feel about the DF really. I didn't feel like I quite 'fit' there but I think that is just because I'm in a different place in my journey than the other adults I spoke to at the AGM. I'd love much more detail and examples in their information, but of course there is a limit to what is possible for them to provide. But they did give me enough information to have the confidence to pursue diagnosis, so that is important, I think.

Not sure if that helps?

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Tom fod » Sat Oct 06, 2018 6:40 am

Hi Lucy and welcome.

That's a very valid point. We're a diverse bunch so anything anyone tries to produce as guidance can be very subjective and was probably written to be non specific. I don't think they mean or intend to be patronising and perhaps we have to remember that.we can all be a bit prone to be clumsy in how we make our points. I'm very detail specific and dare I say it set in my ways.

I do feel their Hidden Asset Guide they produced with employers in mind, was good. I saw it being advertised on one of the Facebook Groups I follow and it is linked to from various posts on here too.
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Re: Views of and experiences with the Dyspraxia Foundation

Post by Lucy » Sun Oct 28, 2018 10:40 pm

Hi Tom,
Yes I don't mean to sound critical - for me 'thinking, speaking and moving in a clumsy and disorganised fashion' pretty much sums me up lol. I am glad to have the resource they offer, it is definitely valuable. I've had a look at the Hidden Assets guide you mentioned now too, which I did like; thanks for letting me know about it!

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Mon Oct 29, 2018 2:02 am

Thanks to Lucy for that.

How can those with the concerns come together, to find a way forward rather than respond individual to what others produce, are you reading this Pete Guest?

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Pete_D&L » Mon Oct 29, 2018 4:33 pm

I’m reading!

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Mon Oct 29, 2018 4:52 pm

Well done and thanks.

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Tom fod » Tue Oct 30, 2018 9:06 pm

Lucy wrote:
Sun Oct 28, 2018 10:40 pm
Hi Tom,
Yes I don't mean to sound critical - for me 'thinking, speaking and moving in a clumsy and disorganised fashion' pretty much sums me up lol. I am glad to have the resource they offer, it is definitely valuable. I've had a look at the Hidden Assets guide you mentioned now too, which I did like; thanks for letting me know about it!
Lucy
No offence taken. I think we will often say what we think and that honesty is refreshing. As someone once said diplomacy is telling someone to go to hell in such as a way as they are looking forward to the journey. :evilb: I like to be direct and make the meaning crystal clear


+++++

Having had the opportunity to listen to and briefly meet one of the DF's Trustees, a couple of weeks ago. I now understand that they're still a v small outfit and while we might want for them to do more, they only have time and resource for so much and are often giving up their own time.

While I am fiercely me and may not always 100%. agree with how the DF do things, they are trying to do the best they can for a very diverse range of people with diverse needs and expectations.

Not sure if we can change the world here or how we can assist the DF in advocating for ourselves and others and where/what/who we can focus to bring about positive change?
Tom
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Re: Views of and experiences with the Dyspraxia Foundation

Post by Andrew_S_Hatton » Tue Oct 30, 2018 9:35 pm

Firstly we need to be members of DF, it is about £3.00 a month.

Then we can think in terms of we instead of they.

It is a small organisation, and I think with relatively few long term active members, but I maybe wrong.

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Re: Views of and experiences with the Dyspraxia Foundation

Post by Tom fod » Tue Oct 30, 2018 10:21 pm

I do have individual membership of the DF and have had for around 5yrs now.

I have regrettably yet to attend one of their AGMs or other events as not been one in my neck of the woods (Gloucester) at a time where I've been free. I would likely need to make a weekend of it and book well ahead for coordination of train /coach and night (or nights) in hotel.
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)

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