Natty Wins Child of Courage or Achievement Award

FINALLY Friday came.

Our house was filled with excited women and one token man, all preening and beautifying each other.

We don't get out of our jeans and wellies nearly often enough, obviously!

Natty and Mia beamed from ear to ear as we washed and straightened hair, painted nails, including a layer of glitter, and gathered dresses, tights, new patent shoes and hair bows together. Their babysitter is a hairdresser and she came in to help and Natty sat stock still while she wielded the scary looking straightening irons through her fine hair. She wanted a touch of lip gloss and a wave of mascara to be like Mummy and Mia too.

We even pinned Daddy Downs Side Up down and plucked his eyebrowns and buffed his nails, and shaved his head. (You all do that to your menfolk before a big night out, right?)

Handbags were found and laid out ready...

Ready for the biggest family night of our lives! For we had all been invited to the Pirate FM Local Heroes Award Ceremony, a glitzy black tie affair, taking place against the beautiful backdrop of the Eden Project. Little Natty had been awarded the Child of Courage or Achievement Award for her modelling, opening of doors for children with disabilities everywhere and gently changing perceptions as she melts hearts wherever she goes.

And yes, there was to be a disco. "With actual DJs who actually work on Pirate FM playing the music we listen to on the radio". (Mia G, 9)

And yes, there was to be "staying up late". (Natty, 6)

And yes, the girls were "coming too". (Natty 6)

...And yes, there "was going to be champagne". (Mummy, 43).

We were dressed and ready to leave in plenty of time. The girls were a cloud of pink and yellow chiffon in the back of the car. As they sat poker still, I joked to Bob that my only stress was keeping them clean until the point that the awards were given out. My biggest nightmare would be a dinner swimming in gravy and a pudding floating in chocolate sauce. I believe pale chiffon is the biggest magnet for dark brown liquid foodstuffs.

"I'm sure they won't serve that..." (Daddy)

Mia and Natty all set to party

On arrival there was a red carpet to float along while photographers took shots from every angle. I bristled with pride as Natty and Mia confidently strode into the room filled with smartly dressed adults, with not another child in sight, apart from the wonderful young woman Megan Rumsey who had won Young Person of the Year for being an incredible sister and voice for those with disabilities.

Mia marvelled at the beautiful gowns, Natty asked everyone "What's your name?"

We sat at the beautifully decorated table, complete with gold bows on the back of the chairs and gold star-shapped ballons, "Just like my shoes!" exclaimed Natty. 

Of course, just for you inspirational girl.

We chatted to our category sponsors, the truly lovely people from Kidzworld who helped set up the event, and began eating. A simple Caprese salad to begin, followed by roast beef and... A SEA OF GRAVY! 

I panicked (thinking of possible big brown stain right down the front of that yellow chiffon) and the lovely waitress brought Natty a dry dinner without the sauce poor mite. Both girls had to be pursuaded by everyone at the table to wear their napkins, so we all ended up doing it to set an example.

Napkin fun

Help, my mother is embarrassing me

Oh and yes, there was chocolate sauce with the brownie for desert!

After dinner the the award ceremony opened with former X Factor star Amelia Lily singing a beautiful trio of songs, the last of which had the most beautiful lyrics that seemed so fitting for Natty. 'You Bring Joy, You Bring Pain'. My facade cracked and I began to cry. Natty took to the stage to meet Amelia and was presented with a signed photo of the singer.

There was some dancing and quite a bit of showing off and bottom wiggling.
That's Natty not Amelia you understand!

We were all emotional before we had even begun.

The awards began and we were all treat to an amazing array of stories that affirmed our belief in community and the human spirit. 

An elderly neighbour who collects prescriptions for those who can't get out. A young woman driven to raise money for eye charities following an eye problem of her own.

A chef who happens to be a supportive and thoughtful boss as well as a culinary genius. 

Parent of the Year, who is a positive force for her children, one of whom has Autism, despite being a single Mum and having her own health issues.

An amazingly brave Emergency service worker, a coastal rescuer, an environmental guardian angel, an encouraging teacher and great paralympic sportswoman and a lady with healing hands.

Natty's award was called. She and Mia took to the stage with neither parent to help them. I wanted both girls to feel an equal part of the celebrations, for Natty is only Natty because her big sister is such an incredible influence on her.

A video clip was played, showing an interview with Natty and I. I don't mind admitting I sobbed like a baby, taking handfuls of the tissues thoughtfully provided on each table.

The clip was funny as well as heartwarming, featuring raspberries, funny faces, more bottom wiggling and a few "You are joking!'s". You can watch it here.

            

The audience laughed with Natty and she and Mia took the applause well, beaming even wider from ear to ear.

They were presented with a selection of toys from World's Apart (who Natty has modelled for ) and a family pass to Kidzworld. Natty couldn't have been happier as she stood and posed for the journalists centre stage.

We had just enough time to meet a couple of the Heroes before some had to leave.

2 people really stood out for me, Matt Vernon who tried desperately to save the woman whose car slipped off the King Harry Ferry slipway last month. An unassuming man who embodies all that society should be, and Shane Edwards who offers oncology massage and has worked her calming and relaxing magic on over 1000 cancer sufferers many of them terminally ill. A woman who simply radiates love and care.

We were just throwing some shapes on the dancefloor when we realised we were in danger of turning into pumpkins. Natty was flagging and finding the music a little loud, so Mia had to cut her wild routine to Guns and Roses short. It was half past midnight!

Thank you, thank you, thank you to all the sponsors and Pirate FM and the judges and nominators and fellow heroes and all those who made Friday night possible.

I know 2 little ladies who had, quite simple, the night of their lives.

I leave you with a quote from Natty this weekend:

"I want party again. I want gold shoes and present for me and surprise for me and music and dance, waggy bottom." And that sums it up in a nutshell. 

Happy to have been nominated here:

                                                                

Thank You Body for What You Have Done

As many of you know I recently took my clothes off, save for a mismatched pair of funky socks, for a photoshoot. They are at the bottom of this post, but I'd ask you to read about my reasons for doing it first.

Primarily it was Kate On Thin Ice who invited me to do it, she who writes an inspirational blog about boosting women's mojos and giving them confidence. 

Yes, I thought, I will show the world that we must celebrate our Mummy bodies, in all their stretched and squidgy glory for they have created our beautiful children.

Then I thought I might as well raise a bit of cash for my chosen Down Syndrome charities while I was at it. Nothing like getting your kit off to get people to look up and give, I figured.

£3500 WAS RAISED FOR VARIOUS DOWNS SYNDROME CHARITIES. THANK YOU X

So, at 43, I did it. My photograher friend at Photography by Maryna donated her time and expertise, along with a make-up lady Julie of Angel Face and Geoff produced a video of the preparations and my reasons. But I found the day strangely emotional, as this behind the scenes photo shows.

The tears behind the bravado

Why was that?

I thought at first it was because I was thinking of all the families just starting their journeys with their little ones with Down's Syndrome and remembering that tricky time of acceptance and adjustment for us.

But no, it was more than that.

I then thought perhaps it was because the last time I was naked in our house with a group of people around me, it was at the planned home birth of Natalia. Perhaps my body was remembering, revisiting the shock and worry.

It was only when I was chatting to a journalist one evening about the photos and why I wanted to share them with other women, that I suddenly realised why that day had been so emotional....

Like all women, my body can tell a story, the story of my life.

The growing up and adjusting to my new shape, the hideous toes I hid until I was into my twenties and moved to Cornwall where flip flops are de rigeur, the growing to accept and gloss over the bits you don't care for and make the most of the bits you do. 

Then there was the stuff it has lived through the horse-riding falls, being married to husband number one Mr Aggressive, the keep fit fads and phases, the parachute jump, the minor RTA.

And then I turned my thoughts to babies

I have been pregnant a total of 7 times. It's quite a lot and it's not something I think about every day. But they are there as part of my journey.

We first became pregnant unexpectedly quickly on our honeymoon, a paradise beginning in the Maldives. 5 weeks later that ended amid blame: the sun, the diving, the rum. I was desperately upset, for life is supposed to go exactly how you plan it when you are first married isn't it? I Googled and researched and planned a detox. It would not happen again.

I became pregnant straight away after our second attempt. We were already more cautious, keeping the pregnancy quiet even from family because it didn't seem real. But it was very real and the morning sickness kicked in with a vengence. I was so desperately ill, lost weight, was listless and struggled to keep down dry crackers and San Pelligrino water. Anything else was unbearable, even the smell of food. Bob had to eat in the garden at one stage. Gradually the illness passed and out came our beautiful, strong, feisty, dark Mia, the image of her father. She was an undiagnosed breach, but luckily we managed.

Being a Mum was wonderful yet all consuming. The tiredness continued, Mia didn't sleep well and breastfeeding on demand continued for many months. The last thing on my mind was another baby at that moment. But, just around the time of Mia's first birthday I became unexpectedly pregnant again. It seemed too early, but I knew I would have coped, but by the same token I was wary of my body's ability to sustain this pregnancy. I had a 50/50 chance right? The track record showed it.

I was right. Again at around 6 weeks I miscarried.

Lying on the sofa in pain, covered in blankets. I began to wonder what was wrong. Why was my body rejecting these babies? Surely there couldn't have been something wrong with both of them. My diet was incredible, I was taking Folic acid, I was only 34. Was that too old?

My GP said there was nothing to worry about and that they would only investigate after 4 miscarriages in a row. Gosh, what if that happened. 4! I wasn't sure if I could take the emotional trauma.

We moved house and quickly pregnancy number 4 was conceived. This time when I saw the blue line, there was no excitement at all. I just thought, 'Right, let's give it our best shot. Here we go again." It became a challenge.

I rested as much as you can with a 1 year old, lifted nothing. But to no avail.

I sat at a baby sign class, looking around the room at other pregnant Mums, so happy and oblivious to my pain. Tears plopped silently onto my lap. Why was it seemingly easy for others and not for us? A selfish thought.

My head knew we were lucky to have Mia and I knew other's pain was much worse. All our losses were early but my heart was growing fearful that I would not be able to make a sibling for our firstborn.

It wouldn't have been the end of the world, we would have coped, adopted maybe. But those were my honest raw feelings of the time.

Pregnancy number 5 came fairly quickly afterwards. I getting frustrated with my body, cross and angry, impatient too. I began searching around for more help, a definitive answer.

I went to a herbalist and Foresight who tested a sample of my hair and prescribed various vitamins for the shortfalls it highlighted. If any of that works it was too late. Again the dull ache that signified the end. The lack of sickness or hideous metallic taste always a sign it would come. I was clutching at straws I guess.

Bob found it hard to comprehend my dark despair. He urged me to relax, that all would be fine, and that anyway we should be grateful for having Mia. I guess for many men, until they see a baby it is hard to feel a pregnancy in the same way as a woman does. She lives it after all.

So, now on the regime of various vitamins, Natty was conceived. I panicked, was desperate to know if all would be fine. I paid for a private ealry scan at 6 weeks. The heart was beating and we were to go home and wait. Nothing more could be done. There were no answers.

The metallic taste came and the nausea rose, I knew these were positive signs. Less nausea than with Mia but never-ending vomiting right until the day she was born. It was miserable but I clung to the notion that this was a good sign. Family tried to take over when they could, to entertain 2 year old Mia. CBeebies played on a loop in between.

When Natty arrived, and there's enough written on this blog about her entrance into our world, people said things about the state of my eggs, my age, why hadn't we had 'the tests'. All those questions making me feel that I had caused her medical problems. Again the body was at fault. I feared my marriage would be over because of an extra chromosome. My body looked fine on the outside but it must be decrepid on the inside. Did all those other miscarriages have DS too? The genetic counsillors could not tell us. Apparently there are no answers to some of life's hardest questions.

It's funny how your mind works when you are in shock because in reality Bob bonded with Natty far earlier than I was able, saying she would be just fine, his Italian belief in family outweighing anything else. And of course babies with DS are born to women of all ages and backgrounds.

But here is the thing:

Natty is not a mistake, nor an error. She is just as perfect as Mia. They are incredible and we made them. Not only that but my body produced every single drop of milk they both drank, for Natty that was expressed life-giving milk that passed down her nose tube for 3 months. When the tube was removed she breastfed successfully for 18 months. Thank you body.

After a period of readjustment, almost mourning that baby we thought we were expecting, Natty drew us in, melted our hearts, began her life long work of teaching us and the world around.

She will face obstacle in life, but we are here to try and smash them out of her way. Perhaps, deep down, this is me trying to make up for that teensy bit of guilt, that I too was initially a part of those barriers. 

Maybe that's why I throw my whole life into changing things for others, not ever wanting any other parent to feel the desperation I felt in those early days, and working to knock down and obliterate those obstacle for her and others like her. My head knows I didn't cause them but my heart is determined to smooth the way.

A couple of years ago came the very last pregnancy. A dangerously ectopic one that found its way despite a coil in place. That time I was relieved when no medical intervention was needed to save me from surgery, that my body dealt with it by itself. 

So that is why I chose to take my clothes off. To thank my body for the babies, those with us and those lost. To thank it for feeding our girls for 3 1/2 years between them.

To shout out to bigots like Frankie Boyle that parents of children with disabilities are like any other, not the fuddy duddies they like to portray us as. 

And, guess what, we are wives and partners and we are still desireable. So there.

LOVE

PRIDE

MUSIC OF LIFE

CHROMOSOMES

ENLIGHTENMENT

I'm going to Britmums Live. Come and say Hi

This sounds ridiculous, but attending Britmums Live last year was one of the high points of my entire life.

I was terrified about going, a country girl from Cornwall who is happier in wellies and playing with my chickens. I'm uncertain in London, a fish out of water. I knew no-one other than a couple of chats online with Kateonthinice and RenataBPlus3.

I had been asked in advance if I would read at the keynote speeches (on a stage in front of lots of accomplished writers!) YIKES!

I was also shortlisted in the Inspire category of the BiBs. Again a very scary and proud moment.

Well, in a nutshell I arrived, terrified and shaky, the butterflies met me and put me at my ease. I wandered around looking for those I might know, staring at stands and feeling overwhelmed, looking at a timetable of workshops that I couldn't decide between because I needed them all. 

This feeling didn't last long, everyone was so supportive and friendly, and once the naked wine buffs came out in the evening, I had found Kate and Renata to share a giggly glass of Prosecco and the awards ceremony with. So many of those I had voted for won, the mood was electric.

A small group of us went for a lovely dinner afterwards and then the all important full night's sleep in a hotel by myself :)

The next day was one of serious note-taking. I felt like a student who wanted to gain every last drop of knowledge from the speakers. But the nerves about reading at the keynote were mounting. I recall several chats with lovely people who told me I'd be fine. Darling HerMelnessSpeaks being one of them and I will never forget how her confidence in me made me feel.

Well, it came to the speech. It was emotional. I shook so hard I thought I was going to faint. I cried. People brought me tissues. People cried. I stopped, caught my breath, repeated my message. Then there was a standing ovation. I just saw it start in front of my eyes, which have tears in them remembering the moment. I have never felt so surprised or proud in my whole life. I didn't even know I had in in me to get on that stage. DoingItAllForAlenya helped me walk back to my chair and held me tight until I stopped shaking and crying.

In short, leaving my children for the first time with my ever so capable husband and doing something completely for me since the birth of my children, not just a relxing treat but something that made my brain shake alive was a turning point for me. I can trully say tha Brimums changed my life forever and I will never look back. Read Thank You For Having Me which I wrote in the post Britmums Live glow, when they gave me a Blogger of the Week award.

Well this year the wonderful ladies at Britmums have asked me to speak, or at least be on a panel during an actual workshop. I'm not sure if I feel a bit of a fraud, but I hope you will enjoy joining us.

And my humble blogette has been shortlisted in 3 BiBs categories this year: Inspire, Commentary and Outstanding. 

And oh goodness, I am just as nervous this year as I was last year...

This is me:

Name: Hayley Goleniowska

Blog: Downs Side Up

Twitter ID: @DownsSideUp

Height: Petite

Hair: 75% grey and costing increasingly more to keep a natural 'mouse' colour ;)

Eyes: Grey/blue, often red and tired!

Is this your first blogging conference?

Last year I was an utter novice, so this is my second.

Are you attending both days?

Absobloominlutely! I live in Cornwall so I have to make it worth the trip. 

What are you most looking forward to at BritMums Live 2013?

2 full nights' sleep! 

Meeting the bloggers that have become close friends online. Meeting new and inspiring bloggers that I hope will become life-long friends. The sense of support from all at Britmums is tanglible.

Actually taking part in one of the panel discussions alongside some incredible bloggers who are my gurus.

What are you wearing?

Comfy yet trendy for the day and killer heels for the party. Really not quite sure exactly what yet though. I'll just be myself.

What do you hope to gain from BritMums Live 2013?

To gently change a few more perceptions of Down's Syndrome from within hearts.

I really need to learn how to be a bit more techy. I am such an accidental blogger.

I also want to publish a book shortly, so need to make contacts for that.

Tell us one thing about you that not everyone knows

I was the voice of the Cheats Mistress on a Games Walkthrough Guides and Cheats hotline. My Lara Croft-esque avatar had a leather mini dress on (perhaps I should wear it to Britmums!)

Number 10 Downing Street

It's been a wonderful, emotional, tiring, inspiring, proud day.
I'm a little emotionally drained to be honest but I want to share a few pics from No.10 Downing Street visit with you straight away.
I will fashion a proper post when home and on the pc.

Let's Pull Together and celebrate our children

"When a light shines brightly, shadows appear darker, they come out fighting. We must keep shining bright and drown them out."

Please join us to write, and write with integrity, to show the world how this man has upset us and just how incredible our children are. That we wouldn't change them for the world.

It's been a fraut, emotional and upsetting week.
The comments of an all-too local Councillor have been impossible to ignore.
And finally John Pring from Disability News Service gave Collin Brewer enough rope to metaphorically hang himself from. Please do not read the article if you are easily upset.

I have started at least 4 posts on the subject, each deleted and scrapped for one reason or another. I feel that Brewer, and a small minority of others like him are nothing but trolls, albeit trolls in the public eye with a microphone in their paws. And my motto is always to starve trolls of oxygen, not fuel their craving for publicity at any cost. If we stoop to their level they have won.

But this man we cannot ignore, we cannot allow him to remain in power (however minor that power might be).

Many have written succinctly over the weekend about Brewer's latest interview, including journalists far more qualified than I. I felt it futile to write another post about his comments and how they echo of Nazi propaganda. I found it hard to write without anger and hurt in my voice. There had to be a gentle effective Downs Side Up way...

So I spent the last few days writing to as many human rights and disability campaigners as I have ever had the pleasure to meet.

Their replies have been heartwarming and calming and I now feel ready to act in my own way against this monster. The positive slant I have chosen to emply doesn't detract from my anger. But there are many ways of skinning a cat so to speak.

1) Sadly complaining to the Council and signing ePetitions are not going to work as no-one appears to have the power to sack Brewer. I have accepted this and will now work in a legal direction. I have asked national disability groups to take this up for us. We have some very high profile people on board. A multi party group of local councillors have written their concern.

2) We must bear in mind that the majority of people are good, loving and accepting of difference. Only a tiny minority, such as Brewer exist. Furthermore, the man is ill and may be displaying signs of mental degeneration or incapacity. It is difficult not to become disillusioned and depressed at times like this but we must focus on our amazing children.

3) We need to show the world what we all know, that individuals with disabilites contribute as fully to society as everyone else.
Let's all flood our local media outlets with wonderful, positive, inspiring stories of the achievements of those with disabilities. Get in touch with your local paper about an event, sporting or for a charity and an individual who has done something news worthy. A person's worth can never be measured in pound coins.

4) If you blog, please join our linky here. I'm calling all the amazing bloggers I know, who write with integrity and intelligence to join together. 

It might be how the Brewer affair has left you feeling, it might be be how amazing your child is. It might be a nugget of support for other parents, a poem or a religious word. Please keep all posts respectable and let's join together in a wave of support for each other, a way of showing the world that Cllr Brewer is utterly wrong. I for one don't want to come out screaming like a banshee.

My first vlog: The end of an era

The baby phase is long gone. Now I've had to accept that the cuddly toddler and beyond phase is to be packed up and put away too.

For Natty, who grows and develops at her own gentle pace, this has extended to 6 years, but I finally had to face the fact that she had grown out of many of her firm favourites. The clothes that had been worn while so many memories were made. We affectionately call them her 'trusty steads'.

Last week I read a touching post by Ross Mountney: Parenting - What Really Matters. about appreciating and enjoying our children while they are young, even if those phases are the toughest, for it simply does pass too quickly.

So please join me for my first ever vlog, about packing away that phase and looking ahead to pastures new. I'm rather nervous about it and would love any feedback you have.

           

Guest post by Rich Harris

Rich Harries

• Hey, below is a copy Copy of the letter I sent to David Cameron, ref Colin Brewer’s idiocy. I'll let you know if he or his office reply. Feel free to share, is do it myself but I'm not particularly bloggy. And well done for what you do.
  
  
  
  Mr Cameron
  
  I truly hope that this mail finds its way through your staff for your attention; I believe this will be of both a personal and political interest to you.
  
  You may be aware of it, but if not, the issue I wish to inform you of is the disgusting comment by the Cornwall councillor Colin Brewer. In February he was forced to resign from his post after remarking that disabled children “should be put down at birth” some 18 months previous, as they "cost the council too much money". He eventually apologised, suggesting that the comments were meant to 'provoke discussion".
  
  Yet last month, he saw fit to re-iterate and justify those comments, with the additional view that “when they [farmers] have a misshapen lamb, they smash its head against the wall; BANG”, and saw no distinction between the two. He explained that his view was because of public funds being taken away from such vital and widely used local amenities as public toilets and coastal paths, and being diverted to the lifelong care of the disabled.
  
  I’d like to think I’d be moved to write to you had his comments not had a personal resonance with me, but they do. My son has moderate-to-severe learning difficulties as a result of Microcephaly, West’s Syndrome and associated brain damage. He’ll never achieve financial independence, and so in Mr Brewer’s view will be a distracting drain for funds that could be better used elsewhere for the rest of his life. Indeed, I’m sure Alfie’s care is expensive, and for that I’m extremely grateful. However, whilst Alfie will never be able to directly contribute to the public purse, his bravery is certainly a motivation for his family, giving us strengbbth to strive, get better jobs, earn more money, and pay more taxes. Sure, we’re still in debt to society, but the way Alfie’s cheery demeanour, love for life, and infectious smile enhance so many people’s lives, I’m sure that in many ways society is in fact in debt to him. His teacher at school referred to him as ‘instant sunshine’ – that means more to me than if he’d graduated with honours.
  
  I’m not sure whether it’s appropriate for you to get involved, but my absolute belief is that public office has no place for a man such extreme discriminatory views. I imagine if he had said that black children should be put down at birth he’d be out of office by now, and this level of discriminatory bigotry is equally deplorable.
  
  For the aforementioned personal reasons, and as a contingency for this communication not reaching you, I intend have forwarded this letter to a number of your listed email addresses, and the No10 Twitter account. Should it not reach you, I’d like the comments to receive as much publicity as is possible so that the public can see what this man has said, so have also copied in The Disability News Service. Ultimately I hope that your influence and input should be sufficient to remove Mr Brewer from a position for which he is blatantly unsuitable.
  
  You’re obviously a busy man, but I’m aware of the challenges that your family have faced, and am sure your disgust will be as high as mine, and of the thousands of people that have read what was said. Thank you for reading; your response and/or subsequent action is awaited with interest by many.
  
  Kind regards,
  
  
  Here is the reply that came back from Downing Street
  
  

  

  
  

Guest post by Bernie Bradley

• • I'm married woman, I am a civil servant I am Irish, I am a mother with a daughter with Down's syndrome, I have a gay best friend who will wed soon. I have my own social security number, I work full time and enjoy (mostly) a good lifestyle. 
    
    
    I will be 40 in August a milestone indeed what a different world it was in August 1973. Had I been a female 40 year old Irish civil servant in 1973 Ireland, I would not have had a job ( the marriage ban was still in place and I would have been forced to leave work after I got married.) I would not have my own social security number, identified only by a "W" on the end of my husbands social security number. 
    
    
    My daughter may or may not be living with me,perhaps she may have been placed in care, not seen as worthwhile, she certainly wouldnt be receiving the help to support her development that she receives today and my best mate would most definetly be living life in the closet and most definetly not getting married. 
    
    Many of the changes that happened in 40 years I take for granted, and I rarely think of the people who went before me who battled hard for me to enjoy the life I enjoy now. The womens movement in Ireland fought hard to get the marriage ban lifted and they were successful. In late 1973 a female civil servant could remain in a job after marriage. 
    
    
    Human rights groups fought hard to remove the criminal status of homosexuality and were successful, in 1993 it was no longer illegal to be homosexual in Ireland. From the mid 1980's women received their own social security number. Services, supports and awareness of people with disabilitiy has grown enormously in the past 40 years and people with physical, sensory, learning disabilities are enjoying a much better quality of life than previous generations.
    
    
    The ins and outs of how these changes are for another day, but what is important is that people fought and fought hard to change things, they didnt get it easy, it was a hard slog they met battles all the way, prejudice, arrogance, ignorance and in most cases simple fear. Many of the opposers to change were politicians, fearing change, fearing the loss of votes never wanted to rock the boat.
    
    Collin Brewer made the headlines for his hideous comments about people with disability, incredulous statements about the burden of a child with a disability. The bad side of public representation is that its mostly the Collin Brewers that make the headlines, for every Collin Brewer with his ridicuous statements you can be sure there are ten Champions of Equality slogging away trying to change things, but never hitting the headlines, Controversy sells!
    
    But I have learned to be thankful for the Collin Brewers of this world,
    (and there are many of him, too many) What he has done and what his likes will always do is to create a platform for the positive story to emerge, you see we now live in a world where Collin Brewers statements are just not acceptable, people will not sit back and listen to his spout such venom, he will and is being challenged. Social media and a new generation is his worst enemy, You see from the moment he uttered those words, he had lost, and his loss is the world of equality's gain. 
    
    
    So Mums & Dads of babies & children with a disability dont get mad get replying! Now is the time, Mr Brewer has given you all centre stage , he in his ignorance has put the spotlight on disability and it is shinning bright so go get him xxxx
    and when you're all done with him can you all come to Ireland and help me, Mr Brewer has plenty of protoypes in the Emerald Isle!
• 
  

Invite to Number 10 Downing Street

I may have forgotten to mention, well it's been a bit of a week, that I have had an invite to No.10 Downing Street.

There wasn't much time to get hair fixed or a new outfit. The nails will have to do and I've only just found time to Google the folk I will be meeting.

Mencap have invited a few of us, those who work in the Learning Disability field, to meet Samantha Cameron. Yep, the PM's wife.

I will try to tell her of our fears in a polite way, if I get a chance. I might even mention the thorn in Cornwall's side, he of the unmentionable name.

For now... the bag is packed. Passport. Check. Invite. Check. Heels. Check. Reading matter. Check. Smartest frock and jacket I own. Check.

Thank you all for your support and well wishes. 

H x

Silent Sunday

Tom Tag Review

Tom Tag is a fantastic new SEN product from Orkid Ideas.The lovely Deborah there sent us a set to play with and review.

Essentially there are 5 differently coloured tags, each with 6 empty slots that house discs that you are free to customise with a large selection of stickers.

The idea is that the tag for each day can be attached to a child's school bag and help them with packing for that day and to provide a handy visual timetable summary.

There are also stickers with the names of the days of the week on them, so you can label each day's tag.

As Natty is only 6 and primary school life doesn't have the timetables changes one would expect to see in secondary school, I decided to use the tags slightly differently.

I made each tag a different theme: clothing, hobbies, food, days of the week.

I was then able to use each tag to provide a sentence model for speech therapy exercises.

"I like singing/swimming/ballet/writing." 

"I'm wearing a coat/an apron, shoes."

I'm eating an apple/sandwhiches/a banana." for example. 

Natty repeated the phrases while I pointed to each sticker.

We were then able to use the tags for a memory game. Children with Down's Syndrome have poor working memory skills and need practice in this area.

We looked at the 5 or 6 stickers on a tag for a while. Then I removed one and Natty had to tell me which one was missing.

Mia got home from school and immediately made up her own game. She mixed up the stickers randomly onto a tag and then challenged herself to tell a story using all those items. "After eating a banana I went horse riding in the morning. Someone was playing the recorder in the background..." etc

I think the tags will be great for older children, helping them become more independent as they move around their school timetable. I would like stickers that show all the self care routine steps in the morning, such as washing and tooth brushing. I could then do away with the large velcro visual timetable on our bathroom wall!

But I also think the tag system would be fabulous for older people with memory loss to help with everyday activities. A neighbour of ours has trouble remembering the stages of tea making for example following a brain bleed. Her husband said a tag with stickers showing the different stages would be invaluable to them.

So, a great product with many possible applications. Useful for everyone. It might even help me get organised! Thank you Orkid Ideas.

This is not a sponsored post.

The Gallery - The Weekend

I love joining in with The Gallery over at Sticky Fingers Blog each week. It's a great way to visit new blogs and meet new bloggers too.

This week's topic is The Weekend and here's Daddy Downs Side Up on a bear hunt with Natty and Pippin... Read about how we turned the trip into a learning experience here.

Shame on you Collin Brewer

Shame on you Collin Brewer not shame on Cornwall.
In summary: a Local Councillor in Cornwall said (in the heat of the moment, when knackered and after a stroke that appently affects his temper) that children with disabilities SHOULD BE PUT DOWN.

I took a breath, raised my eyebrows and we all urged him to give up his post. 
Although many were furious, some even baying for blood, we all know people that say things they shouldn't from time to time. Poor bumbling buffoon we thought, so devoid of love and compassion in his life, so unaware of the wonders our children bring to our lives.

But embarrassing uncles saying things they shouldn't at weddings is one thing, a bigot with a microphone in his hand and in the public spotlight, weilding power, albeit in a small constituency in Cornwall is a dangerous thing. 

He and his wife entered a pub for a drink. Those present fell silent and everyone turned their backs. The majority in is town were shunning him.

The fact that he is an Independent candidate (and this is not about politics for a millisecond) means that he is aligned with no particular party and cannot be sacked.
But he did resign (under sufference and a very very hard hitting radio interview with Laurence Reed on BBC Radio Cornwall). 

We collectively breathed a sigh of relief, despite his reluctance to go he had seen sense at last. We could stop worrying about the riots that we feared might ignite, those turning up on his doorstep who were less forgiving than I.

He would surely disappear into the ether and lick his wounded pride...

Or would he?

Apparently 3 cards from wellwishers and a handful of local chums persuaded him to join a disability charity, work with local families to make amends, stand again as Councillor.

Now don't even begin to ask which 'well-we-do-the-same-with-our-cows' constituents voted for him (sadly I am quoting one gentleman) but he got voted in on Friday, winning the Wadebridge East seat by a gnat's whisker of 4 votes. 

There was a recount. There were boos from some present. The disbelief amongst fellow candidates, journalists and media was tangible.

I can't get angry, I have much bigger fish to fry, but I will play my part in seeing this fool removed from office. For he is embarrassing us here in Cornwall, the world convinced his attitude is 'just part of behind-the-times-thinking which we country bumpkins have down here', which is simple not true. 

The community here is Cornwall is nothing short of warm and supportive. Everyone looks out for each other and more importantly accepts each others quirks and differences. Here in Cornwall is truthfully the only place in the UK that no-one ever stares at Natty, then me as if to see how old I am, then back at her to see how 'affected she is by the condition'. 

The public at large are outraged by Brewer's arrogance and smugness upon re-election. He is still stating that he did nothing wrong. Perhaps we could forgive and move on if he said he was wrong and deeply sorry. I spent 10 minutes calming down a very angry postman on Friday, who knocked on the door to tell my husband and I how upset he and his wife are for families like ours, how angry is he that smug Brewer is back in.

Then there was the young window cleaner who told me he 'wanted to deck him'. I couldn't possibly comment on that.

The egg farmer thanked me for all I am doing to get Brewer out, because, it turns out his neice has Down's Syndrome and he said I spoke for the whole of his family, saying what they couldn't put into words for anger. 

And so you see, the entire cross section of Cornwall is pretty fed up with the bad press this guy is bringing us. Not to mention those who say they won't visit because they fear their children being treated badly on holiday here.

And to those who say 'it was only a throw away comment', 'he didn't mean it' you are agreeing that our children are second class citizens, that such comments don't matter because they have a disability, they are assumed not to have a voice. Well these comments do matter, as much as the terrible racist jokes that filled sitcoms in the 70s as I grew up. They were only 'having a laugh' back then too weren't they... 

Already 92% of all babies disgnosed as having Down's Syndrome during pregnancy are terminated by terrified parnets who recieve little or no support in what to expect. Yes Mr Brewer, put down. Do you begin to see why the comments are so real and so painful?

For those who think we campaigning for his removal are sh%t stirring, I guess you have it almost correct. Not stirring, but trying to remove the dirt from our shoes. Freshen up and move on. Sometimes you simply have to make a stand for what is right. When we shine light brighly into dark corners the shadows always become darker, and they usually protest. Read Outshining the Bigots here.

I've written a couple of open letters to Collin, which you can read here and here.

There's an ePetition to sign here.

I discovered the online complaints form for Cornwall County Council. Pop over and tick the first 5 boxes, mention Collin Brewer and his unacceptable comment, which was witnessed by Disability Cornwall and mention where you are from. I'm sure we can lodge more complaint than the 335 votes he received.

There's also a demonstration at County Hall in Truro on Wednesday morning if you want to peacefully show your feelings.

My interview with Pirate FM news is aired on Tuesday.

I've written to everyone I know at Westminster and every journalist I have ever worked with and every disability group I know worldwide.

We'll keep you posted.

Thank you for your support.


I leave you with Natty's thoughts on the matter Mr Brewer:

Downs Side Up is shortlisted in Inspire, Outstanding and Commentary sections of the 

Brilliance in Blogging Awards. You can vote for us here: