Showing posts with label CDSSG. Show all posts
Showing posts with label CDSSG. Show all posts

All Party Parliamentary Group: Down's Syndrome

Recently an All Party Parliamentary Group DS was formed to draw up guidelines for best practice with regard to the education of children with Down's Syndrome. Each child is an individual, but our children do share particular learning prolfiles and if we can share information on that with each other and our schools, we can help ensure the very best for them.



You can download and read the full recommendations here, and they do indeed make positive reading. There are a few areas missing, and the DSA are still tweaking one or two recommendations in terms of specific learning schemes endorsed. But on the whole, I wish I had had such a document at my fingertips when we were drawing up Natalia's Statement of Education Need before she started school.

Yesterday, Sandy Lawrence who chairs the Cornwall Down's Syndrome Support Group invited 3 other Mums along with her to County Hall for a meeting with our local Director of Children, Schools and Families to discuss implementation of the guidelines locally.

We arrived, suited and booted so to speak, I had even dusted off a skirt and blazer. All of us were clutching our 36 page documents under our arms, each of us with a different experience of education and with children at different stages of the journey.

Between us we brought experience of primary and secondary schools, home education, flexi-schooling, Area Resource Bases, 2 of us were former teachers, one had a business background and the fourth a medical grounding.

The meeting went well. Trevor Doughty was clearly open to talking about improvements for our children and those with Chromosomal Syndromes that follow similar health and learning patterns. We all realise that purse strings are tight for all at the moment, and that money for support doesn't grow on trees, but I think we all felt there were ways we could re-use what we already had at our disposal in a more efficient way.

Within our County, that seemed to be:


  • Some flexibility of the transport system, so that parents didn't feel they would have to send their child to a further away special school or ARB, for fear that if their first choice of a nearby mainstream secondary school didn't work out for any reason they would then lose the right to free transport. The rules currently state that only if a school consider the placement of a pupil unsuitable will free transport continue to a subsequent school.
  • Ensuring support continued to allow children with additional needs or disabilities to be able to participate fully in after school clubs and school trips.
  • Rethinking the way existing speach therapists are used. Perhaps moving towards a place of fewer assessments and writing of reports, freeing up more time to spend actually engaging in therapy and activities.
  • Setting up a Co-Worker system, so that interested parents could be trained in basic speech therapy by the DSA or Symbol UK for example, so that they could set up and run small group sessions for children, under the supervision of a trained SALT. How wonderful would sing and Makaton sessions be for babies, or more targetted games and activities for older children!
  • Then we began to try to envisage a way to identify and bookmark a team of Special Interest Professionals would could be called upon coutywide to deliver advice and support to schools and parents. This could include parents, OT, SALT, Physiotherapist, TAs, teachers, IT and SEN software experts and more. That way, the onus on the parent to research and source cutting edge information would relax, and every child would get a fair bite of the cherry, regardless of the experience and expertise or interest level of their school.

As a group we determined to begin to organise this, for we are all doing our bit already by talking to schools and SENCOs. We just need to coordinate our efforts. And you can't say fairer than that. Perhaps you could do the same.



(Oh, and the crack team squeezed in a cuppa and bite of lunch together before heading off home. So a well spent day all round. I do love a bit of scampi and chips, don't you?)






Downs Side Up Uncovered - the Shoot

After Kate @kateonthinice who writes the Naked Mum blog persuaded me to join her one naked mum a month drive to celebrate our mummy bodies, I decided to tie it in with World Down Syndrome Day on 21st March, the theme being LOTS OF SOCKS or different socks as we are calling it in our house, for everyone is different.

While I was at it I thought I might as well raise funds as well as awareness, so I am collecting monies for the vital work of Down Syndrome International, the Down's Syndrome Association and the Cornwall Downs Syndrome Support Group.

And so the wheels were set in motion. These things are always organic, I never have an end plan, I just follow my nose. 

The wife of a former employer is a supremely talented and professional photographer Maryna Halton of Photograph by Maryna, who happens to specialise in boudoir photography. Although not the natural Mummy look we were trying to achieve, she was used to snapping naked bodies, putting semi clad women at ease and had 'seen it all before' so to speak. She very kindly offered her skills for free. 

So too did her partner Julie Wieczorek of Angel Face, expert mineral make-up artists on Miss World.

Julie applies make-up to a trembling Hayley

A local film maker also offered his services, and Geoff's video clip of the preparations and why I did it is at the bottom of this page.

Suddenly there was a team involved in Downs Side Up Uncovered. The sponsorship started rolling in and there was no going back. Gulp

As the day dawned and the props had been gathered, the nerves increased. I'd made my reasons for doing the shoot clear in Downs Side Up Uncovered, showing the bodies of mums of children with disabilities are like any other, that I lay my feelings bare in the blog, that I am not just a campaigner and Mum but a woman and wife as well.

The day began, the nerves soon abated, but I was astonished at how emotional I found moments of the day. Tears welled in my eyes. What I hadn't foreseen were the stories of those helping out, the reasons behind why they wanted to help.

I hadn't twigged either, that the last time I had been naked in front of near strangers was at the birth of darling Natalia. My body was remembering. I thought too about the families we support and what the day was all about and the tears pricked more, a kind of pride too I guess.

Then of course there are the emotions associated with getting older. The last time I took a really good look at myself naked was probably about 10 years ago and I didn't have to suck my tummy in then. Now, at 43 years one has to work a bit harder to look effortlessly natural, or maybe it just doesn't matter as much what you look like. Priorities have shifted significantly.

Hayley clings to her trusty dressing gown

And so, we did it. We spent 5 hours, doing different poses and locations. We all felt washed out at the end, nervous to get it right, not offend anyone, to produce artistic, tasteful images that portray the real woman. I haven't seen the pictures yet, Maryna is looking through them now. We'll choose the best and  send one over to Kate for her blog next month. Perhaps we'll reveal the others slowly as the charity funds mount up in the pot. Maybe a newspaper would like to feature one and champion our cause. Who knows. 

For now, here is the first of the behind the scenes pictures of the naked mum that is Hayley Goleniowska.





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WATCH OUR VIDEO CLIP ABOUT HOW THIS PROJECT CAME ABOUT AND MY REASONS FOR DOING IT HERE: 


 






Downs Side Up Uncovered


It's that time of year when we begin thinking about World Down Syndrome Day which is coming up on the 21st March. The date represents the 3 of chromosome 21 that individuals with Down's Syndrome have. 

To raise awareness it is also Lots Of Socks Day, or Different Socks Day as I prefer to think of it. For we are all unique and play an equal role in life's colourful tapestry.

We can all get involved in this, wear different funky socks, dare to be bold, get your school involved, your colleagues.
I've decided to do some fundraising for 3 major charities; our local support group, the CDSSG, the Down's Syndrome Association who help families on a national level and Down Syndrome International who work globally.

What am I going to do? Run a marathon? Cycle from Lands End to John O Groats? Sit in a bath of baked beans? Sky dive? 

No. I don't have the time or the stamina for the first two options and I'm not very keen on beans, and I did a sky dive for charity when I was at college, so...

I'm going to be taking my clothes off for a photo shoot. I'll be protecting my modesty with a multitude of differently coloured socks.  Yep, that's right, I'm getting my kit off Calendar Girls style.


Yep, that's right, I'm getting my kit off Calendar Girls style.

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OR TEXT DSUU 47 £AMOUNT TO 70070 TO DONATE


How on earth did this all came about? It's is a question I have been asking myself the last couple of days as I nervously prepare for the hoto session.

It began last year at the Britmums Live Brilliance in Blogging Awards ceremony, where I met Kate @kateonthinice for the first time. Kate and I really hit it off and shared a giggle over a glass of bubbles. We are both quite different, but our personalities slotted together, and it felt like I had always known her. It was a very rare evening where we felt like women, friends, writers, not only Mums.

Kate's blog The Naked Mum is a wonderfully supportive community for Mums trying to value every aspect of their lives, whilst supporting one another. She's had an idea to ask one blogger a month to pose naked, a way of showing that we are not just mums, but women, wives and partners too.

Kate says we should try things outside our comfort zone. It's better than regretting not doing them later on in life. And after all, in writing a blog, one lays ones feelings bare every time you press the publish button.

But more than that I want to show that Mums of children with Down's Syndrome, in fact any disability, are just like everyone else. We have wobbly bits and bits we like to hide, there are the unwanted pounds, places we are proud of, bits we don't mind flaunting, bits that have been stretched beyond return but most of all our wonderful bodies have made and nourished our beautiful children, just the same as everyone else. I am yet to find the green scales replacing skin.

Natty gets her first taste of breast milk at 4 days old

I remember when Natty was born, that I felt ashamed of my body,  foolishly guilty that it had not got it quite right. I have also suffered 5 miscarriages. By getting naked for this year's WDSD I am burying that ridiculous notion and I hope it helps other women celebrate the wonder that is creating all and every life.

I also help to raise awareness for World Down Syndrome Day and raise some money for those wonderful charities. Please sponsor me.

Hayley x