Just to let you know...

2 things,

my order from the fantabulous Oliver at Emerald Crafts has outdone himself again with his fantastic service - I placed my order at 2.30pm yesterday afternoon and it arrived with postie at 8.30am this morning.... 16 hours!!

the second thing I wanted to let you know was... I have received a reply from the editor of the Evening Express. He has completed his investigations and has come to the conclusion that we have been badly let down by them. The remedy he has offered is for me to write a letter  to him for publication "highlighting your web address and expressing the websites purpose and asking people to get in touch should they see fit"

Letter to the editor

Well, I haven't calmed down any from yesterday but I do want to thank all for you who have left messages of support, I really appreciate it.

I have typed out the article that they printed in the paper for you.... although some editions had an abbreviated version which didn't include the website address or even the name.

Little Willow Robertson endures painful treatment 3 times a week. The four year old's condition leaves her in distress and discomfort. It is an ordeal her parents find difficult to cope with,  so much so that they decided to set up a support website for parents of children with additional needs and today Debbi Robertson, 36 and her partner, offshore worker, Graham Brockie, 52 both of Portlethen have gained charitable status for their efforts.
The extra special parents website now has members in Australia, America and Namibia as well as in the north east
Willow was born with a bowel condition which requires the distressing treatment every 2 days, Debbi and Graham, who knew nothing of the condition before Willow was diagnosed, were so frustrated they set up the online support group. Debbi who is also mum to Scott 9 and Faith 2, said "it is nice to be able to speak to other families and see how they manage"  "the website is for parents who have kids with any additional needs - from food intolerance to asthma and terminal illnesses" 
 Debbi said it is frustrating and distressing for parents when they first have to deal with their childs additional need,  she said "we set it up initially because we had never come across Willow's condition. we wanted to to speak to people who understood what we were talking about and it snowballed from there"  "the procedure Willow has to go through is distressing for her but its distressing for parents as well"
Debbi is committed to moving onwards with the site and wants to create an easy source of information for parents,  she said "its great to get recognised by receiving charitable status. it means we can hopefully take on bigger projects in the future" The charity's website is www.extra-special-parents.org

So here is the email I have just sent the editor...

Mr Bates,
I feel I have had to write to you regarding the article in Monday’s Evening Express by Catherine Shanks about our charity Extra Special Parents.
I was distressed to find that there were a large number of inaccuracies and omissions:
• My daughter’s name is Willow BROCKIE not Robertson, Robertson is my married name and as I have been separated from Mr Robertson for many years and he is not Willow’s father – this has caused a lot of unnecessary anguish and embarrassment.
• My daughter does not “endure painful treatment 3 times a week” we have to perform a bowel washout procedure every day as she has limited bowel control due to her congenital condition, which is uncomfortable for her, and which both her and we find distressing as it is an obviously invasive procedure.
• We did not start the website because we find the procedure “difficult to cope with” , we started the website because we wanted to talk to other parents who had experience of Imperforate Anus, the condition Willow was born with as it is not a common condition, and also because my son has Autistic Spectrum Disorder. We felt very isolated and worried about what the future would hold.
• We did not gain charitable status “today” we gained the charitable status from OSCR in January.
• We have members across the whole of the UK and worldwide, not just “in Australia, America and Namibia as well as in the North-east”
• The website isn’t just an “online support group”, it is an information-sharing and signposting website as well – we provide information on benefits and how to claim, signposting for financial, emotional and practical support as well as a place to swap practical ideas, share experiences. We put families in similar situations in contact with each other. And many members make use of the “members lounge” on the forum to relax and ‘get away from it all for a while’.
• I feel the statement “the website is for parents who have kids with any additional needs – from food intolerance to asthma and terminal illnesses” is very misleading. I tried to get across the point that we include needs like food intolerances, diabetes and asthma as these are not often recognised as disabilities, but can be very debilitating and stressful for families. The point is the website is open to parents and carers of children with any kind of additional need, including those with hidden disabilities, physical and mental conditions as well as those with “traditional” recognised disabilities.
• The statement “ wants to create an easy source of information for parents” also suggests the website is still being constructed which is definitely NOT the case, The website is now over 3 years old and holds a vast amount of information already, and is well established. As I stated to your reporter, being awarded charitable status means the following: we now have more doors open to us for raising funds which will enable us to promote the site further both locally and nationally; to also try to raise awareness of various issues affecting families of children with additional needs for instance one very topical issue locally is the cutting back of support staff in Aberdeen city’s schools which will have a direct effect on children with additional needs. According to the Education (Additional Support for Learning) (Scotland) Act 2004, Every education authority must—(a)in relation to each child and young person having additional support needs for whose school education the authority are responsible, make adequate and efficient provision for such additional support as is required by that child or young person, and (b) make appropriate arrangements for keeping under consideration— (i) the additional support needs of, and (ii) the adequacy of the additional support provided for, each such child and young person.
• I believe that in other editions of the Evening Express (e.g. the city final edition) the website name and address were also omitted. Which would render the article a complete waste of space.
• Finally the photograph used was 2 years old and in my opinion (and also of the opinion of several local members and friends) was hardly conducive to attracting new members, in fact I would probably say it has had a detrimental effect. The photograph was taken in July 2007 in connection with a story that was run about my partners bank card being cloned, and the photographer had asked me to look angry and fed up – not the image we had hoped to portray of a family friendly support website. A far better one to use would have been one from this collection http://3276.e-printphoto.co.uk/ajl/index.cfm?z=z&y=y&p_id=7637821&c_id=8402&action=view which is also more recent.

We have had super coverage from Aberdeen Journals in the past, as well as from the BBC, magazines and even The Sun and I am very saddened and upset by the possible harm this coverage has done our website. Needless to say we have had no extra hits or new members as a result of your article.
I look forward to hearing your comments in due course.
regards  

Debbi Robertson
Secretary/Treasurer
www.extra-special-parents.org
www.espkids.org
Charity No. SC040185

Edited to add.... I have received a prompt reply from the editor who has said he will investigate this fully before he replies to me fully and the reporter is not in the office today but he'll get back to me as soon as possible

And by the way, isn't that the most hellish photograph you've ever seen?? my BFF told me I look like I want to batter someone

I am soooooooooooooo upset!!

As you know, Graham and I started up a support website for parents and carers of children with additional needs, and in January we gained charitable status from the Office of Scottish Charities Regulator. I contacted the local press to let them know and they only got back to me about it last week. So I told the reporter all the info she needed, a wee bit of back story, what our hopes are for the site, what the charitable status means for us etc etc. 

They were sending a photographer out on Saturday morning to take pics of us all, but I called and asked them to reschedule as Scott was at his dad's on Saturday and they said they would get back to me. BUT they didn't bother, they ran the story in last night's Evening Express and I'm so upset, and quite a bit angry too.

They got a lot of the information wrong, didn't mention a lot of the important information I gave them, and the final slap in the face was the fact that they used a picture they had taken 2 years ago of Willow and I. Now you might be thinking - hey that's not so bad really - but the photo was taken after Graham's bank card was cloned and they ran a story about it and the photographer had told me to look p***ed off and angry. SO its hardly the best picture to encourage potential members to join the website as I look like this awful bad-tempered harridan. 

I have also been told that the city edition of the paper didn't include the website address - so that was a complete waste of time.

Needless to say, I'm busy composing a rather acerbic email to the reporter and the editor.

Am on a mission

You all know by now that I am a trustee of Extra Special Parents - the support charity for parents and carers of children with additional needs....? well!  Over the last 3 years I have heard so many families talking about the daily struggle they have with the education system - more often than not, if their child is in mainstream. 

Mainstream schools ARE the right place for many children with additional needs to be educated, however - very often their needs are not met and parents/carers find themselves having to fight, sometimes for years, and very often failing, to get their children the education they deserve.

As ESP has recently been awarded charitable status, we have a bit more clout and credibility and I would like to initiate a campaign to ensure that ALL children receive the help they need (in whatever shape or form) to achieve their potential within the education system.

Now, my problem is, I have no experience of anything as huge as this and I need help to get us started. If anyone out there has any suggestions I'm very grateful. 

Manda's Meanderings

Manda visited today - she was up to Aberdeen and stopped in past for a cuppy with her sister and niece. 

 Here's Manda today with baby Emma and her niece Ellie.

It was lovely to see Manda again. We became friends through Extra Special Parents and she is now on the management committee of ESP. Pamela came round with baby Emma as she hadn't met Manda before.

Triffic News

I got an email yesterday with some fantastic news that I wanted to share with you. Extra Special Parents is now a registered charity.

Extra Special Parents is the support and signposting organisation that Graham and I set up 3 years ago for parents and carers of children with additional needs. It has an online forum for parents and carers to chat, share information and to get info on various benefits and other sources of help. We set it up because Willow was born with Imperforate Anus in 2004 and we wanted to talk to other parents who knew what we were talking about. Although we had friends and family they didn't really understand the condition or what it entailed. We thought that if we felt so isolated then there were bound to be other parents and carers out there who felt the same.

We didn't want to exclude parents who may feel the same by restricting the website to one condition, so it now caters for all additional needs from allergies and food intolerences right through to terminal illnesses and everything in between. We have information on a huge range of conditions, as well as holding details of specialist charities and organisations that support individual conditions. There is also information on applying for benefits and other sources of financial and practical help. 

Now that we have had our application for charitable status accepted we can register with HMRC to enable us to claim the tax back on donations from tax-payers and it also opens more doors for us for fundraising.

Our charity number is SC040185

Bad Bad Blogger

I've had my wrists slapped yet again for being a bad blogger, but haven't had any time at all really for crafting - so I was waiting until I had something to show.

Have made a good start on the xmas shopping - not had time to make it back to Costco for the dolls house for the girls, but I'm getting there. Got the girls a my little sister and my little cousin doll each from Argos, and something for Scott. And I have quite a few bits for friends and other family.

Graham is offshore for xmas this year so I thought I'd be having a quiet xmas with just myself and the kids. Mum suggested I go to them, but I find it all a bit too much hassle; getting the kids to rush through opening their parcels so that we can all be showered and dressed to drive 30 miles out the road, then have to drive home in the dark when all I want to do is fall asleep in front of cheesey telly with a cup of tea/glass of wine and a huge box of quality street. So we've decided that mum and dad will come here for lunch - yay, I get to put the new dining table to good use! So mum's bought the crackers and is making the trifle and I just have to make the scotch broth and the turkey and trimmings. So I'm quite looking forward to it all.

I have 11 teacher's presents to give this year!! I know, blooming ridiculous isn't it?? Faith has 4 group leaders, Willow has 4 nursery teachers and Scott has 2 teachers and a classroom assistant. I have loads of Bodyshop miniatures, body butters, moisturisers, body lotions etc so I made bonny wee boxes out of a sheet of 12x12 paper each, filled them with tissue and added the wee gifts, so all I need now is some cellophane from the florist to wrap them.

I made a get well card for a friend of mine from ESP who was recently diagnosed with Breast Cancer, thankfully things are looking quite good and she is terribly brave. I wanted to incorporate some pink ribbon without it being the actual pink ribbon logo.

I'm waiting for a load of buttons coming from babyhippo on eBay. I think I have a bit of a button fetish - now I just need a trip to IKEA for some storage jars haha. Graham will have heart failure if I let that slip.

And finally..... I thought I'd share this pic of my wee angels/toerags :D

Catch Up

We've  had a hectic week, so I've completely neglected my blog. Last weekend we travelled down to West Lothian to visit Mar, Bobby and the boys - its been nearly a year since we were last down there. Scott and Rory went off to the craft club at Just Create on Saturday afternoon and both made fantastic seascapes on canvas, and they both thoroughly enjoyed themselves doing it. I was so proud of my wee boy when we picked them up and I was told that his manners were great and he was awfully polite. It has also made me think that a craft club would be a good thing to have here in Porty. 

So of course I had to buy a few wee bits and pieces while we were there! :D
On Saturday, we finally met Manda. Manda works for Signpost and is also an important part of Extra Special Parents, so it was lovely to finally meet her. And of course she is mad as a bag of mad things with MAD written on the side.
The wine was flowing quite freely all evening, although being designated driver, none of it was flowing my way - no bad thing really lol.
Manda had a go on Rory's brass instrument and also on his bagpipes which made for much hilarity.

Then on Sunday, we headed off to the Fort shopping centre near Glasgow so that I could finally get a nosey in a Hobbycraft store. Picked up quite a few bits and bobs including a great swirly sizzix die for the cuttlebug. Mar and I have also talked about starting to do ATC's. Its something neither of us have tried before but it looks like fun, so I invested in a pack of papermania's new ATC cards and envelopes for each of us.

My brother's girlfriend came in during the week with my wee nephew Kyle, he's growing up so fast and he gets more and more like my wee brother (his dad) every day.

He and Faith got on like a house on fire, playing in the playhouse.

Thursday was manic, with one appointment after another - Earlybird Plus workshop for me all morning, then running around with the kids to and from 2's group, nursery and school, Scott had the dentist (no treatment needed woohoo) and then parents night at Scott's school and Willow's nursery.

Pamela was round a couple times with Emma - she's 8 weeks old now and is starting to look like a wee person now

So thats me more or less up to date, just a quick wee pic of Scott and his new haircut....

Isn't he growing up fast! :(

Willow in black and white

We were away on holiday to Ibiza in July for a fortnight. It was our first family holiday abroad and took ages to organise as the kids all needed passports and my one needed renewing - but thats a whole other saga! We went to a fantastic complex called the Sirenis Seaview Country Club at the far end of San Antonio Bay. I picked this place as it has so much for the kids to do and also because a friend of ours, Rachel, from our Extra Special Parents website lives over there and I thought it would be nice to meet her after talking online for so long.
One of the features of the complex that i thought was really special was the fact that they have a couple of photographers whp spend the day on the complex taking photographs of everyone in the pool and around the grounds and playgrounds. Right enough, you have to buy the photo's but they also were available to have printed as jigsaws, mugs, t-shirts, bags etc.
Anyway, here are the photographs that we got...
Willow

Willow and Graham
Willow again

I can't wait to scrapbook our holiday pictures, but the first one I really wanted to do was the black and white study of Willow. I have been onto a few scrappy sites to try and get some inspiration as I'm so scared of not doing the picture justice. Some people have suggested pastels and some have suggested bold colours so I'm going to have a bash at both.
Firstly I tried out the pastels, and went for a pink and beige theme - although I haven't added a title yet as I'm stumped there for the moment. But my good friend Marion is coming up this weekend and I'm sure she'll be able to help.
I managed to get Mar hooked on cards and scrapbooking earlier this year - I bet her husband Bobby curses me lol, lets face it, this isn't the cheapest hobby in the world!


edit: here's another attempt at a LO with Willow's b/w photo...