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UK Mum Gives Speech in Teen Son's Nappy To Drive Autism Point Home

Alli Edwards NAPPY By Alli Edwards

At 4.40pm yesterday I stood up   in front of Earl Howe, continence industry and room full of Health select  committee bods, dropped my skirt to reveal me wearing one of my son Jon's nappies! I   delivered my whole speech like that - and had drinks afterwards and beautifully cut cakes and sandwiches! They were a tad gobsmacked there on the   terrace pavilion! "Good Lord" said Earl Howe as he sped off to the Lords to do a drugs speech at 5pm.

Coping with a severely autistic, doubly incontinent 14 year old son is the most important thing in the world to me, fighting for nappies, having a supply limited -dignity goes out of the window-  not funny - but who cares, this isn't a topic many will engage in, yet it directly affects thousands up and down the country - and there is to be little or no future investment in continence services. We HAVE to change that - and I will do whatever it takes to let people know what I live with.

My speech was hard hitting - but they heard it all before - I doubt they'll forget being told by someone wearing one of the products!

This champagne tea event was the launch of the All Party Parliamentary Group for Continence Care, APPG report "Cost-Effective Commissioning for Continence Care (see photo of me delivering, attached), hosted by Rosie Cooper MP next to me in the picture. The organisers were at an absolute loss to decide what photo to put on the front cover of the document, so they used hands. All the brochure printing in the world won't soup up the mess I have to deal with, there really ought to be a more efficient way of spending a small continence budget, other than brochures when patients are crying out for products - however, I am informed, this is the way it's done!

No-one knows what to do about this subject, the topic is so sensitive yet very important to those affected. It most certainly needs upping on the political agenda - problem is how to get that across.One of the country's top continence professionals who helped on my nappy legal case, despite having an OBE for her work, has lost her post due to cuts.

So many there in that room were behind me (so to speak!!!)

Carers 'on the outside' are at breaking point. The House of Commons Health Select Committee have to ask - what would drive a mum to do this? The story of my jaunt to London is going into my local paper tomorrow with this pic.

Alli Edwards is with www.cryshame.org and a tireless advocate for her son. You might recall this post she wrote titled, The Unvarnished Truth About Autism."

 

 

Comments

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Barbara

Please pass on any information about how to tailor the diet of a child with autism. What to avoid? What to eat, etc.
Thanks

Mr.T

Well done Ali Good on you I have two on the Autistic spectrum I know what its like trying to get supplies you are limited to one pack of tena and one pack of plastic pants these people dont realise again well done

Mavourneen Moore

Well done Alli, what a fantastic statement to make... goes much deeper than words alone.

Jenny Allan

Thanks Alli. You were wonderful!!

Winston Cardwell

God save the Queen -Alli Edwards! (and every other mother on the planet who works so hard, every moment of every day for the same ends!) thank you, thank you, thank you

Joan Campbell

Alli is brilliant and I commend her for her bravery and tenacity.

rileysmom

Alli, you are awesome! Just awesome!

Judith

You are AWESOME!! Keep up the fight!

mama vs. the pharmafia

Well done!!!! Since we don't have a PR/advertising budget of millions, that's the kind of attention-getting "statement" we need a lot more of. Very bold, smart and funny - but totally on target.

Seonaid

Oh well done Alli. There is no stopping you in your campaign to highlight the difficulties faced by parents and their autistic children. How I would have loved to have been a fly on this particular wall. I can just imagine the faces of the audience while you dropped your skirt and proceeded to deliver your talk - nappy clad. I bet it's the most memorable speech ever heard in the House of Commons.
Congratulations in getting such an auspicious audience for your campaign. Super trooper......!

Rosemary Cousins

Fantastic Alli. You are a true pioneer.

Personal Perspective

The Prevalence of Gastrointe­stinal Problems in Children Across the United States with Autism Spectrum Disorders from Families with Multiple Affected Members

6 May 2011

Objective: To perform a large registry-b­ased study to determine the relative prevalence of gastrointe­stinal (GI) problems in children with an autism spectrum disorder (ASD) from families with multiple affected members compared with their unaffected sibling(s)­.

Methods: In-home structured retrospect­ive medical history interviews by parent recall were conducted by a pediatric neurologis­t.

Results: Parents reported significan­tly more GI problems in children with ASD (249/589; 42%) compared with their unaffected siblings (20/163; 12%) (p < .001).

The 2 most common Gl problems in children with ASD were constipati­on (116/589; 20%) and chronic diarrhea (111/589; 19%).

Conclusion­s: Parents report significan­tly more GI problems in children with familial ASD, especially those with Full Autism, than in their unaffected children.

Increased autism symptom severity is associated with increased odds of having GI problems.

-------------------

I'm very pleased that researchers took the time to talk to and interview the parents of autistic children hopefully this will become a "Gold Standard" Benchmark.

Obviously the results speak for themselves and begin to consolidate the evidence in regards to the role of the gut and the immune system in Autism. Which made it's start in 1998

KDM

Good for you!

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