Ability Magazine - October 2015 by Spina Bifida Hydrocephalus Ireland

ability Magazine of Spina Bifida Hydrocephalus Ireland Annual Conference Edition - Autumn 2015

POSITIVE LIFE CHOICES PRESENTS

EmpowerMEnt

CHAIRMAN’S ADDRESS & CONTENTS

CHAIRMAN’S ADDRESS Hi readers. Another year has passed and yet again the conference is upon us. It has, as always, been a challenging year for the organisation but I believe we continue to meet the challenge head on. I am hopeful that the coming year will be a good one given that we are heading towards an election and this should focus the minds of the powers that be. We need in the coming months to remind the decision makers of their commitments to the disability sector in order that we can continue to provide the level of service we have always done and more. Since last year’s conference we have appointed Tom Scott as our new CEO and I would like to take this opportunity to welcome him and wish him well in the job. I and all of the board look forward to working with him. The work of the organisation is continuing and we have just come off the back of a very successful SHINE project which we got great feedback from. The peer support continues to go from strength to strength and the family support workers continue to be an integral part of the work of SBHI. The Saturday Club is also continuing to be a great success and thanks to Andrea for her tireless work in that regard. The International Federation continues to provide support to us as a national organisation and we continue to be represented by Thelma on that. I believe the conference has a great line-up this year and I have no doubt that many will be inspired and motivated by the speakers we have lined up.

In this issue: Chairman’s Address l Meet The Team l CEO Address l Annual Sports Day 2015 l Packie Bonner Golf Classic l Folic Acid National Campaign l Kingdom Wheelblasters l Ger Daly - Mission Impossible… NOT!!! l Mums & Tots Awards 2015 l Positive Life Choices – Empowerment l Ita's Story l Assistive Technology for People with Disabilities l Clonshaugh Resource Centre l Ciara & Keith’s Special Day l First Visit to Water Edge in 15 Years l Wheelchair Skills Day l Steam Run l Shine 2015 l Around the Country l

I look forward to seeing you all at the conference and hope that you all enjoy this edition of the magazine and indeed the conference. – Frank Larkin, Chairman, Spina Bifida Hydrocephalus Ireland, www.sbhi.ie, info@sbhi.ie

Spina Bifida Hydrocephalus Ireland (SBHI) National Resource Centre: Old Nangor Road, Clondalkin, Dublin 22. Tel: (0I) 457 2329 Fax: (01) 457 2328 Lo-call: 1890 20 22 60 Email: info@sbhi.ie Website: www.sbhi.ie Ability magazine: Editor: Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com

A WORD FROM THE EDITOR:

Above: SBHI now on Instagram. Below: We have a Donate Now button on our Facebook page – makes it easy to donate!!!

I would like to take this opportunity to thank all those people who contributed to the Ability magazine. I hope you will enjoy reading this issue. – Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com

www.sbhi.ie

MEET THE TEAM

LIST AND CONTACT DETAILS National Resource Centre, Old Nangor Road, Clondalkin, Dublin 22 Phone: 01 4572329 Fax: 01 4572328 info@sbhi.ie Board of Directors Chairman

Mr. Frank Larkin

flarkin@sbhi.ie

Vice-Chairman

Mr. John Henry

johnhenry@eircom.net

Hon-Secretary

Ms. Thelma Cloake thelmacloake1@gmail.com

Hon-Treasurer

Mr. Gerry Bell

Nat. Youth Officer Ms Andrea Fox

bellgerry53@yahoo.ie andreafox@eircom.net

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

National Resource Centre CEO

Mr Tom Scott

tscott@sbhi.ie

01 457 2329

Accounts

Linda Morrison

lmorrison@sbhi.ie

01 457 2329

Administrator

Katy McManus

kmcmanus@sbhi.ie

01 457 2329

Receptionist

Andrea Fox

info@sbhi.ie

01 457 2329

Educational Officer

Katie Dunphy

kdunphy@sbhi.ie

087 379 2051

Youth and Respite Services Manager Louise Healy

lhealy@sbhi.ie

085 711 9087

Youth and Respite Coordinator

hriney@sbhi.ie

01 457 2329

Helen Riney

Family Support Workers: Aine Harrington

(Mayo/Leitrim/Roscommon/Sligo/Galway)

aharrington@sbhi.ie

087 939 5371

Hazel McGeough (Cavan/Monaghan/Louth/Meath/North County Dublin)

hmcgeough@sbhi.ie

086 819 4790

Ciara Miley

(Dublin – odd number postcodes/Kildare)

cmiley@sbhi.ie

087 742 2543

Jane Mullane

(Waterford/Wexford/South Tipperary/Carlow/Kilkenny)

jmullane@sbhi.ie

087 652 7175

Clare Riordan

(Dublin – even number postcodes/South County Dublin/Wicklow) criordan@sbhi.ie

087 220 9625

Sarah Jacobsen

(Westmeath/Longford/Laois/Offaly)

sjacobsen@sbhi.ie

085 711 9062

dgallagher@sbhi.ie

086 819 4791

Deirdre Gallagher (Cork, Kerry)

Orthopaedic Footwear Centre Administrator

Karen Malone

kmalone@sbhi.ie 01 457 2326

Resource Centre, Clonshaugh Reception Vickie Green

sbhiresourcecentre@gmail.com

01 848 7311

Manager Aisling Ni Eochaidh

aislingneochaidh.sbhi@gmail.com

01 848 7311

Maria Clnch Martin Fahey

Congratulations to our CEO Tom Scott and his wife Nina on the birth of their daughter Sadhbh www.sbhi.ie

CEO’S ADDRESS

CEO ADDRESS Well, 2015 has certainly been a whirlwind so far! In July I joined SBHI as CEO and it was straight in at the deep end with a press conference to launch a folic acid awareness campaign on the very first day of work! From this point on things have continued to be very active – just the way I like it! I was able to visit most of the SHINE weeks, meeting so many great members, volunteers, and staff. The activities seemed like great fun and everyone involved told me about what a wonderful time they were having. Since then I have also been able to visit a wheelchair training event for young children and their families, various SBHI Branch committee meetings, the Louth / Meath Family Fun Day, the fundraiser at Parnell’s GAA, the SBHI Sports Day, my first SBHI Board meeting, and the most recent SBHI NEC meeting. At the same time I have been getting to grips with everything that underpins our work. I have met with all of the great SBHI staff, listening to where they have come from and learning more about their experience. It has also been an important time in which I’ve been analysing where the organisation stands now, as well as thinking about where SBHI will be in the future. I can see that we have a great history and that this foundation can lead us into a really positive future. By embarking on this journey together, there will be obstacles to overcome, tough decisions to be made and, of course, plenty of hard work required. However, I already sense that this ethos has been the core of SBHI since 1968, and that in pursuing this future together, then great things can happen. I look forward to meeting those of you who are attending the Annual Conference this October and, for those of you who cannot make it, I look forward to meeting you soon. I will be communicating more about the SBHI plans for the future in the coming weeks, please feel free to contact me whenever you like via any of the following methods: tscott@sbhi.ie, facebook.com/tomscottsbhi, 01 457 2329. – Tom Scott, Chief Executive Officer, Spina Bifida Hydrocephalus Ireland.

SBHI CEO Tom Scott (left) at the recent launch of the Safe Food Folic Acid campaign.

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ANNUAL SPORTS DAY

Annual Sports Day 2015 Morton Stadium, Santry

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GOLF CLASSIC

PACKIE BONNER GOLF CLASSIC PALMERSTOWN HOUSE, 21ST AUGUST

After a couple of unsettled weeks weather wise, we were delighted to get a beautiful bright sunny and breezy day for our annual Packie Bonner Golf Classic in the fabulous Palmerstown House Stud Golf club on Friday 21st August. A total of 30 teams had registered to play and they took to the course just after 12 noon for a shotgun start at 12.30pm. After a cloudy start to the day, the sun came out and although there was a stiff breeze blowing on the fairways, this had little effect on the 120 golfers now enjoying the resplendent course and greens on offer at Palmerstown. Credit must be given to the green-keepers for the condition of the course and greens, as was commented on repeatedly by the golfers as they made their way around the eighteen holes.

We had organised the players into two separate competitions, with ten teams that came through our qualifier competitions competing for the Packie Bonner Perpetual Cup, and the other 20 teams playing for prizes in the corporate classic. The golf was very competitive throughout the day as everybody tried their best to be in the prizes at the end. We also had prizes for the Longest Drive for ladies and gents and Nearest the Pin along with a Beat the Pro competition with our Pro golfer Eugene McEnaney. THE WINNERS WERE AS FOLLOWS: Packie Bonner Perpetual Trophy : 1st Trevor Melbourne, Noel Casey, Anthony Daly and Anthony Norris. 2nd Mick Mullane, Donal Ryan, Vincent Woodlock and Gerard Liston. 3rd Donal Corbett, Liam Fitzgerald, Joe Keogh and Seamus Nolan.

Corporate Winners: 1st Pete Shinnors, Seamus Shinnors, Diarmuid Shinnors and Frank Wade. 2nd Ian McDonnell, B. Brodigan, P. Devlin and C. Curran. 3rd Mike Kelly, Mervyn Chapman, Brian Mohan and Justin Carroll. 4th Tommy Gallagher (Snr), Tommy Gallagher (Jnr), Dominic Ward and Conrad Cooper. 5th Liam Newman, John Deacy, Jimmy Roache and Tim Casey. Gents Longest Drive: Paul Leahy. Ladies Longest Drive: Geraldine Farry. During the meal we had our blind raffle which once again proved very popular with everyone and raised another â&#x201A;Ź2,130 for which we are very thankful to all present. After a brief welcome by yours truly it was time to hand over to our host for the day Mr. Packie Bonner. Packie spoke of his initial involvement with SBHI, through his testimonial almost 20 years ago, shortly after the birth of his niece Oonagh who has Spina Bifida, and who is now in college in Letterkenny and getting on very well with her life. He also spoke very eloquently about the many challenges faced by people with Spina Bifida and/or Hydrocephalus and the differing effects these conditions have on different groups of people. He had special mention for our guests from the resource centre in Clonshaugh,where he visited on a couple of occasions to see at first hand the work and training going on there. Packie also mentioned the importance of all the

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GOLF CLASSIC Left: Michael Mullane, Clonmel Golf Club, presenting a cheque to Packie Bonner. Below Left: Packie Bonner Golf Classic – the winning team.

projects undertaken by SBHI and appealed to all those present to continue to support where possible the work of this wonderful organisation. In summing up Packie committed himself to continuing to work closely with SBHI in making the lives of our members a little bit more tolerable. The final act of the night was our Charity Auction and this year we had three very different items on offer. First up was a beautiful, framed, hand-painted picture, painted by our members from Clonshaugh and this sold for €300 to Mary Menton. The next item was a meal for ten people cooked in your own home by celebrity chef Joe Shannon of TV3. This included Joe and a waiter travelling to your house with cutlery, crockery, glasswear, wine, water, preagreed 8 course dinner with prosecco and canopie reception. They even offered do the washing up! This item was sponsored by the Radisson Blu Hotel Sligo and it sold for €850 to Trevor Melbourne. The third and final item was a Jersey worn by Packie at the World Cup USA ’94 and as he explained he has given most of them away or donated them to various charities so this is one of the very few survivors of that golden era for Packie and Irish soccer. This

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was a much sought after item and with the bidding started at €300, it wasn’t long until we had a bid of €900 and after an appeal by Packie to round it off, a final bid of €1,000 was made and Packie sold it to Willie Greaney. Packie signed the Jersey and Trevor Melbourne very kindly offered to frame it for Willie free of charge.

The overall consensus on the Packie Bonner Golf Classic 2015 was that it was a huge success and we hope to make the 2016 event even bigger. Thank you again to all our sponsors, supporters and competitors for making this event the success it is. – Peter Landy

FOLIC ACID

FOLIC ACID NATIONAL CAMPAIGN LAUNCH Talking about folic acid in the context of a national organisation which supports everyone living with Spina Bifida and/or Hydrocephalus can often lead to upset on the part of those living with the conditions themselves, or with those connected to the individuals affected. SBHIreland believes it is important to communicate the possible benefits of taking folic acid in the correct dosage and at the right time. However, we also believe that no one – NO ONE – should be made to feel like they are inadequate due to either not knowing about folic acid, or taking folic acid and yet still experiencing Spina Bifida during pregnancy. With this in mind, earlier this year SBHIreland worked with Safefood to launch a national campaign to stress the importance of women taking folic acid as a daily supplement. The campaign message was that all women who are sexually active and who could become pregnant should take folic acid daily, irrespective of whether they are planning a pregnancy or not. The campaign 'Babies Know the Facts About Folic' was developed to help address Ireland’s high incidence rate of Neural Tube Defects (NTDs) such as Spina Bifida among new-born babies. Folic Fact Most women have heard of folic acid and think of it as something to take while you

SBHI CEO Tom Scott (second from left) at the launch of the Safe Food Folic Acid campaign. are pregnant. The fact is that if you are sexually active and could become pregnant, whether you are planning to or not, you need to take a folic acid supplement every day.

Why take folic acid every day? Many people are unaware that about half of pregnancies are unplanned. This means that by the time you realise you are pregnant it may be too late to help support your baby’s spine and brain development by simply taking folic acid. Your baby’s spine develops fully in the first 28 days of pregnancy. That’s why taking folic acid is essential for three months before and during the first three months of pregnancy. You never know when you might become pregnant, so taking folic acid every day could help to protect your baby. If you are sexually active and could become pregnant, whether you are planning to or not, we recommend that you take a 400 micrograms folic acid supplement every day before becoming pregnant and during the first 3 months of pregnancy. It is important that you receive all the most up-to-date and accurate information on folic acid. Please visit: www.safefood.eu/folicacid to find out all you need to know. n

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KERRY WAY

Kingdom WHEELBLASTERS The Kingdom Wheelblasters is an Irish Wheelchair Association affiliated sports club for children and teenagers with a physical disability which originated through Deirdre Gallagher, Family Support Worker for Spina Bifida Hydrocephalus Ireland, when she noticed the gap in services for such a group in Kerry. It is run by parents on a 100% voluntary basis and is the first club of its kind in Kerry. It has been set up on the blueprint of the incredibly successful Rebel Wheelers in Cork. The Kingdom Wheelblasters has been up and running for two years. Starting initially with just four children, we now have nine children plus their siblings. Our membership is growing steadily as our profile grows. The Rebel Wheelers started out with just three children in 2008 and now has over 50 children with disabilities as members. Our club meets fortnightly, on Saturday mornings at the newly developed John Mitchel’s Sports Complex in Tralee, the main sports hall is perfect for our activities. By far the most popular sport played in the club is wheelchair basketball but the club has introduced its members to wheelchair hurling, tag-rugby, boccia and handcycling. The club intends to get its members involved in athletics sports and more as it grows. Our club is acutely aware of the extremely positive outcomes that sport can bring to our members, given that one of our coaches is a three-time Paralympic athlete. He is an inspiration to our members and always talks about the purpose and discipline that sport gave him as the building blocks for developing independence whether he had a disability or not. The benefits for parents are also not to be underestimated as the club gives a venue for parents to talk about their experiences, exchange information and support each other.

Top and bottom pics: The Wheelblasters in action. Right: Leah Hickey with Paul Ryan, IWA Sport. Below: Family Fun: Leah’s brother Jack Hickey trying out the hand-cycle at our club in Tralee which is open to the whole family.

The running of the club is organised by parents and our funding to date is a €5 fee per family per session. The equipment we use at the moment (basketball wheelchairs) are on loan to us from IWA Sport to get the club started. Driving the success of the club is Tadhg Buckley, Mairead Hickey and Lisa Hickey whose dedication cannot go without recognition and praise. Without this small committee along with fellow parents, the club would not be where it is today. If you would like to know more about our club please feel free to contact Deirdre Gallagher on 086 8194791. n

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A MEMBER’S STORY

GER DALY - MISSION IMPOSSIBLE… NOT!!! They say that the longest journey starts with a single step. Well, as a wheelchairuser, my journey to achieving a degree of fitness that I was happy with didn’t start literally with a single step, but with a VERY short push on the road near my home.

Ger Daly – BEFORE!

It was July of 2012. I was thirty years old, and the closest I had come for many years to being physically active was watching a game of soccer on the television or attending a Kerry football game. Sure, I had thrown the odd basketball at a ring at the back of my house as a youngster, or played my own brand of soccer with friends (using my fists to control the ball and “shoot”). I had even broken my wrist around the age of eleven or twelve when I fulfilled the role of goalkeeper while my older brother and a friend of his took pot shots at me at home. But, as local children of my age began to drift away as the years passed, I found that, due to a lack of independence, I became increasingly isolated in the remote community where I lived. No physical activity, little or no regular interaction with the outside world. There were times when, as I look back on it now, I know depression set in. I was living at home with my parents, where virtually everything was done for me, and I had never really taken any notice of, or pride in, my physical appearance. When I reflect on it now and see photographs of myself from those days, I can see that it would have been obvious to others that I was making little or no effort to consciously keep myself healthy. I just didn’t really concern myself with such things, for whatever reason. Looking at those photographs now, it is embarrassing to see the state I was in. I didn’t know it at the time but I weighed at least eighteen stone, if not more, and was only going in one direction – the wrong way. In some ways, in terms of maintaining my general health and in particular my weight, I was up against it on two fronts. Not only did my disability and lack of an opportunity to engage in physical activity deprive me of an outlet to maintain some degree of physical fitness, but my parents also owned a small country shop, where I basically had free rein to plunder all manner

Ger Daly – AFTER! of sweet treats whenever I wanted, as often as I wanted. It was a “perfect storm” of circumstances that was never likely to yield positive results. Had events turned out differently, I would probably still be in that rut. In fact, had events turned out differently I could easily have found myself in a very precarious situation. But, as the saying goes: “It’s an ill wind that doesn’t blow some good.” My memory would not be the best, so in terms of tying down the exact sequence of events I couldn’t swear that this is exactly

how my journey to fitness started, but it is generally accurate. In the late spring/early summer of 2012 my mother, on whom I was heavily reliant (I still am if I am honest), went to hospital in Cork to have a procedure carried out in connection with a medical condition she has lived with for many years. While my mother was in hospital I suffered from a fungal infection on my toes which required a visit to my GP. During my visit, the subject of my weight and fitness came up, and my GP described me as being borderline diabetic.

www.sbhi.ie

A MEMBER’S STORY When you hear a medical professional referring to your physical state in those terms, you would have to be an idiot not to at least make an effort to do something about it. So I did. In July of 2012 my dad helped me to weigh myself using an industrial weighing scales that he had kept since his days of running the country shop, when it would have been used to weigh bags of animal food stuffs. I had to sit on this weighing scales, and from where I was I couldn’t see the gauges where he was calculating my weight, so I had to take his word when he told me what it was (and this would become an issue in the ensuing months when I sometimes wondered if he was telling me my actual weight or leading me to believe that I might have been a couple of pounds over my actual weight in order to keep me working hard). On that first day I weighed exactly eighteen stone, at least according to my dad! I had asked my GP and also a dietician he had referred me to, who I admittedly only attended once because I wouldn’t be great for following the advice of someone like that, what my ideal weight should be but unfortunately neither seemed able to do so. At least, that is how I remember it. So I set myself a target of getting down to fourteen

stone. Why fourteen? I have no idea. It was just something to aim for. Completely unrealistic, but a target nonetheless. So it was that around this time I embarked on that VERY short push that I mentioned at the beginning. I planned to push myself to a neighbour’s house and back, a round trip of about 400 metres. I didn’t make it. I got home after about fifteen minutes with my tail between my legs. Persistence paid off though and eventually I got to a point where I was pushing myself to the nearest townland and home again, a distance of about 8 or 9 kilometres, maybe two or three days a week. I was lucky in that I lived right on a four-cross roads and each road offered varying degrees of difficulty so I was able to try one road for a few months until I started to find it too easy and then move on to travelling on another road. All of this was done using my regular everyday wheelchair, which at that time I had already owned for nine years. I weighed myself weekly, usually on a Thursday, and in early August 2013 I took a major step in my evolution. I travelled the forty-four kilometres to Annascaul to participate in my first ever 5km road race. I completed it in approximately fifty-seven minutes and followed it up with the best-

tasting lunch ever in Tom Crean’s pub, The South Pole Inn. Celebrating the beginning of my adventure in the home of another adventurer! I even had dessert, my reward for the effort I had put in! I reached my goal of fourteen stone in May 2013, having lost four stone in nine-and-ahalf months. I then reassessed my target and decided to aim for twelve stone, simply because if I reached that point I would have lost one-third of my body weight, which I thought would be a pretty cool thing to be able to say! I achieved this is May 2014, after twenty-one months of hard graft. I had been using the athletics track at the An Riocht Athletics Club in Castleisland onand-off for exercise and through my use of their facilities I started to become aware of other fun-run and road race events around the county. At the time of writing, I have now completed thirty-nine races, including four 10ks, and I am considering the possibility of doing a 10-miler. I am still using my twelve-year-old everyday wheelchair for racing, although I am looking into getting a proper racing chair. My next goal is to complete a total of fifty races, which I hope to reach in January 2016. – Ger Daly

AIDAN KEARNEY - WORTH A READ HONOURS STUDENT We have news to pass on to members and Ability magazine. Our son Aidan (aged 22 ) has achieved a B.A. Honours in Humanities degree from Carlow College. His conferring ceremony will take place on 13th November in the Cathedral of the Assumption, Carlow. Aidan hopes to do his H.Dip in the University of Strathclyde, Scotland, in 2016. Aidan has Hydrocephalus since birth. – Aidan and Alice Kearney, Wicklow Town.

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Hi everyone. This is a book written by a grandad of one of our very young members. Glyn Jenkins has very kindly offered to donate all royalties from his book to SBHI. Such a grand and touching gesture to make. "The book is my recollections of funny stories and characters I encountered during my working career. The book is dedicated to my father who is my hero and covers my 31 years as a miner.” If you wish to purchase a copy you can do so here: http://www.amazon.com. – Chloe Martin

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MUMS & TOTS

MUMS & TOTS AWARDS 2015 Back in July, Mums & Tots magazine asked for nominations for their annual awards sponsored by Tesco. Unbeknownst to us, my son Luca (Wicklow Branch) and Ciaraâ&#x20AC;&#x2122;s daughter Kila (Wexford Branch) were nominated for awards, along with Ciara and I being nominated in the Top Mum category. Luca and Kila, who are both aged 4 and great friends, were thankfully nominated in separate categories so were not competing against each other but it led to some happy rivalry between Ciara and I! The voting continued throughout July and August and on the 17th of August we went along to the awards ceremony in the Croke Park Hotel. We were delighted that both Kila and Luca won their categories, Top Tot for Kila and Top Story for Luca, and Ciara won Top Mum, which I was also delighted about. It was a great honour for us all to be nominated for awards and it was a wonderful way to highlight the amazing courage and determination that our kids have shown in their short lives so far. We would like to thank all those who took the time to vote for us. Mums & Tots Award: Ciara, Kila and brother Dylan Mahoney, Wexford.

â&#x20AC;&#x201C; Sarah Lynch

Mums & Tots Awards 2015.

Mums & Tots Award: Sarah, Luca and Freya.

25 OCTOBER

WORLD SPINA BIFIDA & HYDROCEPHALUS DAY The World Spina Bifida and Hydrocephalus Day reminds the public and policy makers that Spina Bifida and Hydrocephalus are a reality and increases awareness about Spina Bifida and Hydrocephalus to improve the lives of people living with these conditions. This year we are asking all branches to get as much publicity either locally or nationally for SBHI. The selling of our Torc Pins, wristbands etc will not only generate funds but also help to raise awareness. n

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POSITIVE LIFE CHOICES – EMPOWERMENT

Positive Life Choices agenda Friday 16th october:

2.45pm–3.15pm

Gerry Maguire

–––––––––––––––––––––––––––––––––––––––––––––––––––– 7.30pm–-8.30pm

Opening Ceremony – Gerry Bell MC

––––––––––––––––––––––––––––––––––––––––––––––––––––

Welcome by: Frank Larkin

3.15pm–3.30pm

and introducing Mayor Tom Farrell

____________________________________________________

–––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30pm–’til late

Living A Full Life with Spina Bifida -

3.30pm-4.00pm

Afternoon Break Sport - The Physical & Social Aspects Christy O'Neill

Evening Entertainment:

–––––––––––––––––––––––––––––––––––––––––––––––––––––

Sheraton Bar

4.00pm–4.45pm

Peer Support Facilitated by Gerry Maguire and Lorna Whelan

saturday 17th october:

Assisted by Ciara Miley FSW

–––––––––––––––––––––––––––––––––––––––––––––––––––

(SBHI Adults only)

8.00am–9.00am

Breakfast: La Provence Restaurant

–––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30am–9.30am

Registration - Outside Hoey Suites

–––––––––––––––––––––––––––––––––––––––––––––––––––– 9.30am–9.45am

6.00pm–7.00pm

–––––––––––––––––––––––––––––––––––––––––––––––––––– Presentation - Mr. Tom Scott CEO - Tom who?

–––––––––––––––––––––––––––––––––––––––––––––––––––– 10.15am–11.15am Bernadette Kerry - Burns Management

Mass: A reflective and celebratory mass

––––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30pm–12.00am

Conference Close Dinner & Evening Entertainment

Conference Open - Hoey Suites Mr. Frank Larkin, Chairman SBHI

9.45am–10.15am

_____________________________________________________

Hosted by SBHI Board of Directors ––––––––––––––––––––––––––––––––––––––––––––––––––––– All the sessions include 15 minutes Q & A session ––––––––––––––––––––––––––––––––––––––––––––––––––– Andrea Fox:

Children’s Fun Club

–––––––––––––––––––––––––––––––––––––––––––––––––––– 11.15am–12.00pm Morning Break

sunday 18th october:

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12.00pm–1.00pm

Panel:

8.00am–10.00am

Siobhan Mungovan, My Back Bone

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Ciara Hughes, Healthy Living

10.15am–10.45am Registration:

Mary De Courcy, My Journey

Breakfast: La Provence Restaurant

AGM Voting Eligibility Registration

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1.00pm–2.00pm

11.00am–1.00pm

Lunch - La Provence Restaurant

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National AGM: Hosted by SBHI Board of Directors

Caring For The Carer -

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Marion Mahon - Carers Association

1.00pm–2.00pm

Lunch: La Provence Restaurant

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Programme subject to change.

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POSITIVE LIFE CHOICES – EMPOWERMENT

EmpowerMEnt biographies Bernadette Kerry

Ciara Hughes

Bernadette began her nursing career in 1977. She has more than 30 years experience as an educator, researcher and clinician. She is one of the founder members of the Wound Management Association of Ireland. _________________________________________________________

Ciara is 25 years old and a member of the Mayo/Leitrim/Roscommon Branch. Ciara has found her mobility and quality of life has vastly improved through changes to her diet and exercise routine. _________________________________________________________

Mary De Courcy Frank Larkin Frank, a member of the Donegal Branch, was elected as National Chairperson of SBHI in October 2013. A well-known Letterkenny man, Frank is also a disability campaigner and continues to work on behalf of all our members. _________________________________________________________

Mary is almost 60, a mother and grandmother. Until about three years ago Mary didn’t know she had SB and always thought it was Polio which affected her mobility. “It was a big shock at first but then I found SBHI and haven't looked back since.” _________________________________________________________

Gerry Maguire Tom Scott Tom is the new CEO at SBHI. Tom joined us having worked for the last four years with SHINE – Spina Bifida Hydrocephalus Information Networking Equality – in the UK. Prior to this Tom worked here in Ireland in a variety of settings including special education, residential care for adults with intellectual disabilities, and youth work. This is our opportunity to learn more about who Tom is, and about his thoughts on the future for SBHI. _________________________________________________________ Siobhan Mungovan Siobhan Mungovan was born with Spina Bifida and although living with this condition has brought her to some lows it has also helped her soar to new heights. She knows her limits but throughout her life she has tried to break free of the limitations that come with Spina Bifida at every turn, determined not to let the condition define her as a person. It has always been a dream of Siobhán’s to put pen to paper and to tell her own story giving people an idea of what it has been like for her living with Spina Bifida. Even though it has brought its ups and downs, Siobhán’s motto in life in the face of it all is to “Keep Smiling Always”. _________________________________________________________

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Gerry Maguire is the Chairman of the Dublin Branch of SBHI and is also the Chairman and interim co-ordinator of the SBHI Peer Support Service. He has written a book on his life experiences of living with Spina Bifida called Walk Away and Forget Him. As well as his work for SBHI, Gerry is a Civil Servant based in the Department of Health. He also presents a weekly radio programme on NEAR FM 90.3. _________________________________________________________

Marion Mahon National Carers Support Manager The Carers Association is Ireland's national voluntary organisation for and of family carers in the home. Family carers provide high levels of care to a range of people including frail older people, people with severe disabilities, the terminally ill and children with special needs. The Association was established in 1987 to lobby and advocate on behalf of carers. While the government has begun to initiate some services for carers, the Association believes that the vast majority of Ireland's family carers still remain without vital services. These services, such as in-home respite, are essential to family carers. _________________________________________________________

Christy O'Neill Sports – the Physical & Social Aspects Christy is well known within SBHI. He has been involved with sports for many years and has taken part in a number of marathons and sporting events. n

A MEMBER’S STORY

ITA'S STORY – 25TH OCTOBER, WORLD SPINA BIFIDA DAY – ITS SIGNIFICANCE FOR US 25th October is World Spina Bifida Day and also marks the birth of our daughter Ava. This date is very close to my heart, as it's something that has come into my life unexpectedly, but has made it so amazing nonetheless. Spina Bifida is the most common birth defect with Ireland holding the highest rate of cases in the world. It happens on day 28 of pregnancy. Out of every one thousand babies born per year, one will be born with this neural tube defect. It presents itself as an opening (a lesion) on the back where the spine does not close while in the womb, leaving nerves exposed and damaged. Therefore anything below the lesion level is paralysed, the damage is irreversible and permanent. Spina Bifida carries many adjoining conditions such as hydrocephalus, this is fluid building up in the brain causing the head to swell, this requires the insertion of a VP (ventriculoperitoneal) Shunt. A valve (fluid pump) is placed underneath the skin behind the ear. The valve is connected to both catheters – one inserted into the ventricle in the brain by drilling a small hole in the skull. When extra pressure builds up around the brain, the valve opens, and excess fluid drains out of it into the belly/chest area. This helps decrease inter-cranial pressure. This device Ava will have for life. Also it brings along with it possible hip dislocation, clubbed feet, bowel and bladder problems. Your child will probably never sit, crawl or walk. These words are all so normal to me but on the 25th of September 2013 these words were as abnormal to me as they are to you as you read this. I had an appointment in Holles Street, Dublin, the National Maternity Hospital, due to an issue my local hospital picked up on. I went for a scan knowing I would not walk out of the room the same woman. As the doctor scanned my baby's spine I cautiously observed, it looked perfect, but then it just stopped.... I haven't a trained medical eye but even I knew that was not normal. He sat me up and said, "look, it's not good news, I know what's wrong with your baby, have you heard of Spina Bifida because this is what your baby has." Words started being thrown at me, words like paralysis, lesion, shunt, wheelchair, never walk, Temple Street, surgeries. I kept my calm but I wasn't really

guilty, wondering what I had done wrong, I did what they said, I followed the rules. Then came denial, it's ok, it's probably not that bad, I can fix this; to fear, what do I know about this, am I enough for this baby, how can I care for a child with a disability, and finally came anger and a lot of it, why my baby, why does my baby deserve this, why is her baby perfect. All questions that will never be answered.

Ita and Ava listening either. The nurse beside the doctor for some reason offered me a tissue, at that point I hadn't cried but it was then I broke down. David cradled me as I cried for our baby. While writing this I promised myself I would give an honest account of this journey so in advance I apologise if this upsets anyone. When the doctor stopped talking I eventually calmed down. It felt like I was being punished for something I had done. We knew nothing about Spina Bifida, and we never knew it would come to over-shadow our every thought from that moment on. We were a care-free couple anticipating the arrival of our first child. Before we left I was handed a sheet basically telling me everything that was wrong with our baby, a list full of statistics of what he or she would possibly be able to do or not. When we walked out of the room I could feel all the women in the waiting room just staring at me, red cheeks, swollen eyes, a stuffy nose, it was like I was looking at myself through their eyes, I was the woman that had just gotten bad news. I never thought I'd be that woman. We sat in the car outside the hospital for what felt like an eternity. While we sat there I noticed a couple sitting in their car facing us, smiling... They were looking at ultrasound pictures so blissful and happy and I was so jealous of them. That was supposed to be me, it was supposed to be us. The journey home was a blur, thoughts racing through my mind, what will my baby look like, will my baby ever walk, will my baby have friends, and will my baby ever fall in love. I went through emotions I've never experienced before, I felt

I found out when I was 36 weeks pregnant, so for the next few weeks I just hid myself away in my mother’s house afraid to even go to the shop in case someone would approach me with apologies and words of comfort. On one occasion I just left because in my mind I felt everyone was looking and whispering, "That's her, that's the girl whose baby is sick". I wanted no pity, no comfort, I just wanted to be left alone… honestly I wanted to not be pregnant any more and I'll admit that wholeheartedly. I wanted it to be a bad dream. I wanted to start over. I felt so ashamed and almost embarrassed that I couldn't even get this right, that I didn't offer my baby the one thing it needed from me and that was safety. I was ashamed that I didn't give David a perfect, healthy baby, that I had in some way stolen his hopes and dreams of how his child would be. I felt so alone that no one could possibly understand my heartache. As a woman, I felt broken like I had failed at my sole purpose in life and that was my lowest point. Nearing the end of my pregnancy I was exhausted like any expectant mother, just I was exhausted from worrying, researching, praying and mainly crying. It was week 39 and being my first I thought at minimum I'd have at least another two weeks to go. How wrong was I. Usual Monday morning I woke to realise our little girl was on her way. I freaked and panic set in. I really wasn't ready for this earlier-than-expected arrival both emotionally and mentally. Long story short the next day, Tuesday 22nd October 2013 at 3.59pm, Miss Ava Rowe was born. She was whisked away, I didn't get to hold, touch or kiss her. For the first ten minutes of her life I didn't know whether she was a boy or a girl because everyone was rushing around and busy attending to her, it's like there was a fog or a mist in the delivery room with all the chaos. I finally had the courage to ask David, "Are her legs moving?" I think to that point I

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A MEMBER’S STORY still denied this was happening to me, I convinced myself that they would pop her out and say, “Oh sorry, our mistake, the scans were wrong, take your baby home and enjoy her.” If only!!! He hesitated and said "kinda". I knew by his expression there was no movement. I was brought into the recovery room and there was this period of calmness and I savoured it, all the while fighting tears and tiredness. I placed my hand on my tummy and I never felt so alone, my teammate was taken away. That night we visited Ava in the neo-nates. I searched and searched her chubby legs and perfect, tiny toes for some flicker of movement, some flicker of hope but nothing and it knocked me right back into the reality of Spina Bifida, the reality that I could not fix this. I glanced around at all the other babies so tiny, so precious, watching their fragile legs moving and kicking and looking at Ava – a big, strong baby, perfect health in every other way but her legs were simply lifeless.

and "perfect" life and you live happily ever after. The reality was so far from that. Instead I was in this place I’d never thought I'd be. Leaving her in the nights, saying goodbye to Ava in a nurse’s arms before another surgery, trusting them with my most prized and precious possession, having doctors crowd into your room looking at your daughter like she was on display, being told all that was wrong with my baby was not how I had planned out this experience all those years ago. I've been tested to the brink of falling apart and I wish no mother to ever experience that road. Ava had major surgery to close her back after five days of life, it was a game of wait and see, would her head size increase which would indicate the need for a shunt. Seven days

The loss of the experience of having your first baby, it was so abnormal and so far from the dreams I had growing up and these dreams happen when you’re a little girl playing with your dolls in your room, you’re the Princess and you meet your Prince Charming and you have a "perfect family"

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I do think though the emotions I've gone through will always lurk under the surface waiting to rise again when something reminds me of the struggles and what Spina Bifida has brought to my life. Something so simple as buying clothes, holding an outfit in my hand that I love so much but feeling it just wouldn't be suitable for her, constantly checking waistbands that they won't cause pressure on her scar which would lead to pressure sores, they probably wouldn't but in my own head they prove to be a daily problem. These average moments have somehow been "complicated" by Spina Bifida and events such as Ava's first vaccines was one such day – going into the nurse I was excited but anxious, I quickly undressed Ava and sat her on my knee begging God to let her cry to let me know she had some feeling, to let me still hope. Before I knew it the nurse had the plasters on and nothing!... No cry, no whimper, just smiles. The nurse commended Ava on her bravery, I couldn't reply. David said she has Spina Bifida, she hasn't feeling in her legs. I admired his calmness and total acceptance of the situation because I certainly didn't accept it then, I wanted to shout at the nurse, but I just hadn't the strength. I dressed Ava and left. This condition has a way of knocking you right over when you least expect it, this normal event turned out to be not so normal and it really does hurt.

The following day Ava left with her dad for Temple Street Children's Hospital by ambulance. The last few weeks of pregnancy I had prepared myself and ran everything through my thoughts, first day at school, Holy Communion, Confirmation, secondary school, college. I foolishly didn't prepare for now, I didn't prepare for this goodbye and I was a mess. I sat in the hospital that night alone wondering why the hell this was happening to me, being the only woman without a cradle by her beside, balloons and cards for a baby girl that was nowhere to be seen, setting my alarm day and night to wake up and express milk for a baby that wasn't there. It was two days later when I was let out of hospital due to bed shortages and I went straight to Dublin. It was then I finally got to hold Ava but even at that she was lying on a pillow on my lap. I longed for her to be in my arms to feel safe again. I knew then I had a very important job to do and I was instantly terrified. I'm not glorifying myself by no means, there were days in Temple Street I didn't have it together. I fell to pieces in front of doctors and nurses. I allowed strangers see my most vulnerable side. Living in fear every time Ava's door would open, fear that something else would be wrong. Fear there would be more bad news, and I think I'll always grieve the life I thought Ava would have as someone once said to me, it's a loss of a dream, a dream of how your life would have been, how Ava's life should be and our life as a family.

granted, the ones we all expect our child to achieve. But mainly I appreciate the normal things and I'm grateful for all that is so good about Ava. She hears me sing to her, she sees my face, we can sit together at dinner as she munches down hers. We can cuddle during her bedtime bottle, these "normal" moments are so amazing and important to me.

Ita and Ava after surgery and everything was going perfect, we thought we were on the home stretch only to find during a routine nappy change her babygrow was wet all up her back, her wound had broken down and leaking CSF (cerebral spinal fluid). I felt so defeated and angry, she was brought away and re-stitched. That Monday morning she had her shunt placed. Finally we got home that weekend, it was all so surreal but shortlived as we were up and down twice more the following week with wet bandages, rapid increase in head size. I thought it would never end, I wanted time to just stand still… I didn't want to go back and I certainly didn't want to endure this anymore. Eventually a routine happened and I started to enjoy Ava and life again. I’ve gained this rare appreciation for all of Ava's accomplishments especially the ones people take for

Another incident was when I was in Dublin, my parents were up visiting and we popped out for lunch – a welcomed escape, but not an enjoyable one, my mind was still back in the hospital. I remember sitting in this shopping centre and totally observing, blocking out all sound and just watching people. Looking at the simplicity of walking, how easy it looked, and knowing how hard it would be for Ava to do if ever. Watching kids running around, kids kicking in buggies, pulling their feet to their mouth, watching a little boy sitting on his mother’s hip as he wiggled his hips and legs because he didn't get what he wanted. A panic came over me, all these people can walk, young and old, they didn't get Spina Bifida but my daughter did. I was so angry and bitter. Moments like this will always exist in my life and that's something I've learned to cope with. I'm so proud of Ava, she has been through so much in her tiny life and she amazes me every day. I've gotten more joy, love and

A MEMBER’S STORY happiness from her moments I never thought I'd have sitting by her bed in Temple Street and I wouldn't change her for diamonds, I wouldn't change this path because Spina Bifida is a part of who Ava is, however it isn't her whole being. I only want for Ava what every parent wants regardless of ability – happiness, health, fulfilment in life and someone special to love. There are bad days, there always will be, as one person said to me before, a very special person who found me sobbing one day in my living room cradling Ava crying about how "perfect" life would be if this hadn't happened to me, and he simply said, "perfection does not exist within the human race, I’m not perfect and neither are you and therefore you must stop striving for something that has never existed nor can ever be obtained." I was dumb-founded but I grew up a lot after that conversation, I knew I had this cross to carry but I was going to carry it with my chin up from then on. After writing all this, sharing our story with you all, stirring up old memories and emotions, it's actually hard to believe it happened, hard to believe I was once so frightened of the future, but it did happen, and we survived it, emerging from it stronger human beings and an even stronger family. This road that was so terrifying to me has led to the most beautiful of views, there have been many hills to climb and a few bumps to avoid but we got there and after being here a while it allows you to catch your breath and savour every moment. I've experienced loss, fear, anger, jealousy, and loneliness,

depression accompanied by joy, laughter, love, appreciation, forgiveness and finally acceptance. Ava will for ever carry her scar, it’s her symbol, her trademark, her "tattoo" as I call it. It's proof that whatever tried to hurt my daughter once upon a time, lost. She fought and she won. It's also a reminder to me that life is so precious and should never be taken for granted. I couldn't imagine life without Ava, I'd rather have her and Spina Bifida than not have her at all. My daughter has Spina Bifida and I couldn't be more proud of that fact and I'll forever be her biggest cheerleader. Ava is here, she survived, she is alive, and I'll never take that for granted. This time last year I asked God everyday why me? Why did you burden me with this condition, but now I couldn't be more grateful for his blessing. He must have seen something in me, a part of me I never knew existed, he never gives more than you can handle and I've made peace with that. I'm not out to change the world or how disability can sometimes be viewed, I'm just here to give Ava the most wonderful life, full of love and opportunities, that is my purpose. I cried myself to sleep so many nights worrying what would Ava be "tomorrow", back then I failed to notice that she is "someone" today! Someone I couldn't live without. I can only describe this event that happened in my life as such, being on top of the highest peak, taking in the view, carefree, untouchable... suddenly you lose balance, you fall by some earth shattering movement and you find yourself in this deep, dark,

lonely hole. You sit, for what feels like eternity sobbing, feeling pity for yourself, lonely, knowing the world has kept on going without you. Until one day you find your feet again, you learn to stand again. You find your voice again, and you shout you almost scream HELP!!! Then someone throws you this lifeline, this rope and you use it every day getting closer to the top, but this journey has a few falls in store again. We all have a plan, almost a mental map of what route we are to take, we follow it daily then one day you come to a fork in the road and your path is blocked, so many trees block the way it's impossible to avoid. So you go on a detour, uncertain, afraid, and almost curious. In our day-to-day lives we follow a route to and fro then one day we have to go on this detour, we follow the signs and eventually we pass through this town, with a big welcome sign, hanging-baskets full of the most colourful flowers you have ever seen, children playing, neighbours chatting over the garden fence all the while saluting you as you pass by, these people will one day be your best friends your confidant. You just don't realise it yet. Eventually we find our route back, we get back on "our track", however we're a little different than before. We have found this rare, hidden gem tucked away. And we can't help but revisit it time and time again. This is me now, I never planned on Spina Bifida, I just kind of ended up there one day on my detour, and what beautiful memories and moments it has brought to me. x n

ASSISTIVE TECHNOLOGY FOR PEOPLE WITH DISABILITIES Assist Ireland assistireland.ie. This website is provided by the Citizens Information Board. It contains information on assistive technology and a directory of products available from Irish suppliers for people with disabilities and older people.

Enable Ireland Enable Ireland launched a CD entitled "Assistive Technology For Living". Targetting adults with physical disabilties, carers, personal assistants, educators, employers and funders, this CD includes a wealth of information on a range of assistive technologies including computer access devices, communication aids, power mobility devices and environmental control devices. Additional information on funding, legislation and current service providers and AT suppliers is also included.

Try-it Try-it.ie provides a previously non-existent facility to those interested in or affected by assistive technology in Ireland. This resource enables people with disabilities to trial electronic assistive technology devices; read product reviews; make informed decisions about what best suits their particular circumstances; and avail of assessments by potentially more informed and highly trained professionals (as a result of the education, training and support dimensions of this resource). Service users therefore benefit both directly and indirectly. In addition this resource has the potential to provide long-term benefits to service providers and to enhance the quality of AT assessments.

DDAI DDAI operates its National Driving Assessment Centre at the DDAI Headquarters in Ballindine, Claremorris, Co. Mayo. The centre is equipped with the only Static Assessment Unit in the country and provides assessments to learner drivers, as part of driver rehabilitation or to benefit older drivers. The association operates a general information service on all disability issues and entitlements, offering specialist information and advice on all aspects of disabled driving; motor insurance, purchase and adaptation of motor vehicles and the Disabled Drivers / Passengers Tax Concession Scheme, Motorised Transport Grant, driving abroad, car hire for people with disabilities and many other subjects.

See more at: http://www.briireland.ie/assistive-technology-for-people-with-disabilities

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RESOURCE CENTRE

CLONSHAUGH RESOURCE CENTRE

Irish Rugby Training. Hey Aisling, who’s that behind you?

Gannon Park! Members Michael O’Callaghan, Shane Rickaby and Gary Mangan with Rep of Ireland goalkeeper Shay Given ahead of recent European Qualifier against Scotland.

Group from Clonshaugh Resource Centre exhibiting their paintings in Merrion Square.

Eam on Dunphy w ith m em ber,Connie Richardson,in M errion Square.

The group from Clonshaugh pictured with the Dublin Fire Brigade.

Footy Fundraiser: Players from both Ayrfield and Sandyhill Ladies Football Teams played a charity match which raised €1,197.40. Well done to all involved. Ayrfield’s Shauna Coy and Amy Powney chase referee Derek McDonnell and give him a good soaking!

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A MEMBER’S STORY

CIARA & KEITH’S SPECIAL DAY As I flicked through the pages of a magazine the following words jumped out at me. “Once in a while, in the middle of an ordinary life, a fairy-tale happens.” I knew I wanted those words to feature in our big day. My name is Ciara O’Donnell and I am 35 years old. I have Spina Bifida with all its usual quirks and challenges. In May this year I got married to a wonderful man and can honestly say I am still in a bubble of happiness. I met Keith in 2012 and we hit it off straight away over brown-bread ice-cream. He was very suspicious of brown bread in ice-cream at first but I won him over in more ways than one! He has been there ever since through lots of ups and downs in recent years and as well as being my “other half” he is my best friend. In 2013 Keith asked me to marry him just before Christmas and we set a date for 2015. We thought we had a lifetime to plan and organise but the time came around very quickly! There was a lot to think about especially how to make the wedding work for us as I am a wheelchair user. Myself and my mother talked about very little else for the next year and half! I chose one of my best friends as bridesmaid as well as my niece and Keith’s best friend agreed to stand by his side on the day. I better not forget my nephew who was a great pageboy! Keith and I chose a local hotel as it was completely accessible and they had a good reputation for weddings in general. The surrounding walkways are beautiful with a lovely duck pond and we went there regularly for walks so it was only right that we got married there! The hotel staff could not have been nicer or more accommodating to us in the lead up and anything I needed to make the day work access-wise was done. We even had a low table for the cake which no one else noticed but worked perfectly for us. We chose to have a Civil Ceremony in the hotel which meant we could have the ceremony, readings and music we wanted and the comfort of the ceremony and reception being in the one place. One of the biggest issues for every bride is finding the right dress. I wasn’t sure I would be comfortable doing the usual dress hunting as wedding dresses tend to be very heavy and structured. I chose a beautiful, lace dress from a department store bridal section. It was simple and elegant. I did wonder in the run-up whether I had made the right choice not going for the bridal shops. I watched far too many “Say Yes to the Dress” programmes and wondered if I

Ciara & Keith taking their vows should have gone down that road. In the back of my mind though I knew I would never have been comfortable in a cramped dressing room with dresses that were corseted to the “nth” degree. A friend of mine altered my dress for me so that it fitted perfectly and on the day it was exactly what I had always dreamed of. My chair was also a concern as I wanted it to look special on the day. I had a friend do a special cover for the back of the chair and I got a beautiful set of spoke guards designed for the day. I still have them on as I can’t bear to part with them! The day itself was like a whirlwind. Very calm in a lot of ways that morning but it flew by so fast. Friends did hair and make-up and it made for a very laid-back morning although there were nerves when I was waiting for the photographer to arrive. It’s hard to describe what went through my head in the car on the way to the hotel. I suddenly got very calm and knew I was marrying the man of my dreams. One moment that sticks in my head is when I had to take a lift up to the ceremony room. Just me and my dad. It was surreal. I was about to literally go into another room and start a whole new life. I couldn’t wait. The ceremony was beautiful and emotional but parts of it were a blur. It was like being in a bubble with only a few people in the room. All of the things I had stressed over, dresses, shoes, flowers, nothing like that was

important. It really didn’t matter on the day. All that mattered was that myself and Keith were starting this whole new adventure together. Our ceremony was very personal because we were able to choose the readings and songs that meant something to us. It was very special. Our booklets had the beautiful phrase that I had seen after just weeks of reading wedding magazines. Our fairy-tale was happening. The reception was lovely with a gorgeous meal and lots of laughs and tears at the speeches which were both funny and emotional. We had a family table but instead of a “top” table we sat in the centre of the room with all the other tables in a circle around us. It was perfect for us. Myself and Keith had decided on a band and disco for the evening part. We did have one little surprise however. We didn’t want to do the usual first dance as it just didn’t feel right for me. Keith had a great idea – one evening and with the help of good friends we got a garden swing where we could both sit, we decorated it with lights and other bits and pieces. When everyone came into the room we were sitting on the swing. We had told the band what our favourite song was and asked that everyone would dance on the floor with us looking on. It was just magic and one of my favourite parts of the day. The rest of the day flew by as so many people told us it would. We had a ball and

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A MEMBER’S STORY

Ciara and Keith during their reception. watching my other half doing the “Tommy K” dance with his family and friends was one of the funniest things I have ever seen. It summed up a brilliant day. Over next few days we headed off to Mayo to relax. It rained the whole time but it didn’t matter. My advice to anyone getting married who has to do things a little differently is to do whatever works for you. Little differences on the day make for a great talking point whether it’s funky shoes or a different style dress or even a garden swing! Most importantly relax and enjoy the day. The organisation is over at that stage so all that’s left to do is enjoy it all. As in every wedding, we had challenges. There were tears also. Tears over bridesmaid

Ciara with her proud parents.

dresses and tears over shoes. Trying to find shoes when you are a bride with a difference is not easy but we got there. The internet was a life saver for alternatives and some very quirky ideas along the way. Good friends and family were invaluable in the lead up as well and anything that needed to be done was done without any fuss or bother. One challenge that sticks out in my head was transport. All the vintage wedding cars are beautiful but not great for getting into and out of if you are a wheelchair user. Luckily for us a local firm had a car that was exactly what we needed. It worked out perfectly on the big day. Interestingly enough the bouquets needed thought as well. Holding a bouquet while pushing a chair is not an easy task. As it happened my

dad brought me up the aisle in my chair but trying to hold the bouquet coming back down the aisle with Keith needed skill that I didn’t know I had. So now it’s all about settling into married life. The patience, love, communication, the little rows over things being randomly left on the kitchen table, that’s what it’s all about. But more importantly, for it’s about having this person who is there for each other no matter what. Someone who sees the differences but doesn’t see them. Someone who helps me to find a way to do things when it seems impossible and I do the same for him. And of course there’s icecream. Lots of ice-cream. – Ciara Byrne O’Donnell

Disability Awareness Workshops My name is Mary Aylward. I studied sport and leisure management and sports career development in college. I have completed the train the trainer course. I have also completed a disability inclusion training in sports course with the CARA Adapted Physical Activity Centre, which is the only recognised course in adapting sports for disabilities in Ireland. I also have over three years experience of delivering disability awareness workshops to transition year students. I offer disability awareness workshops to schools and companies. I am also available to consult with primary and secondary school teachers for advice on adapting PE lessons to include pupils/students with disabilities. In this regard I can draw a lot from my own experience at school. I also facilitate sport and activity sessions for groups of people with disabilities and the elderly. These activities include boccia, curling, wheelchair basketball, wheelchair hockey. n

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NEWS

FIRST VISIT TO WATER EDGE IN 15 YEARS This year Wexford County Council as part of its Disability Strategy took a precedent step in service provision with the introduction of a pilot initiative to provide beach wheelchairs at two of its Blue Flag beaches. The initiative was led by the Access Officer in conjunction with the shared resources, vision and commitment of Wexford Council’s Environment Department and with the support and the collaboration of local business and local community groups. This initiative now means that the golden sandy beach can be used and enjoyed by more people; people who previously because of a disability or mobility issue were unable to access and enjoy the natural and wonderful amenity of the sea and sand. The first of the Beach Wheelchairs was launched at White Gap, Curracloe, on the 8th of July. The Hippocampe beach wheelchair with its balloon wheels and streamline features allows users the opportunity to share the experience of soaking up the sun on a golden sandy beach, enjoy the sound and sight of the sea and its tumbling waves and the sensation of having ‘hot’ sand between their toes. The second of Wexford County Council’s beach wheelchairs, the De-Bug, was launched at Rosslare Strand beach on 28th of July following on from a successful launch at Curracloe beach earlier in the month. The De-Bug beach wheelchair launched in Rosslare is seen as a more conventional style of upright chair and

Bernadette Flood on Curracloe beach, Co. Wexford, in a Beach Wheelchair. affords, for those who may require, a seated position of transfer. Both beach wheelchairs now afford users access to two of Wexford’s Blue Flag beaches and the opportunity to share the experience of a day out at the beach with family and friends.

Further information regarding the pilot initiative can be found at the following link: http://www.wexford.ie/wex/Departments/ AccessForAll/NewsandEvents/Name,25744, en.html – Caroline Horan Access Officer, Wexford County Council

Presentation of cheque at the SBHI National Resource Centre, proceeds of the Christy Dunne Golf Classic.

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NEWS

WHEELCHAIR SKILLS DAY – A GREAT SUCCESS!!

Above: The Wheelchair Skills Workshop. Right: Abigail Seagrave-Daly. Far right: Eanna Doyle . Below: Eddie Brett and Luca Keogh. On Thursday 30th July we held a wheelchair skills day in Firhouse in South Dublin. It was facilitated by ‘Go Kids Go’, a UK based charity that provide fantastic wheelchair-skills training. Roy and Emily from ‘Go Kids Go’ arrived with a van full of wheelchairs so that not only could members avail of these essential skills, but parents and brothers and sisters too! Skills covered on the day included negotiating slopes, kerbs and rough ground, wheelies, safety information and games and dance. They also covered emergency evacuation techniques, and we all held our breath as Roy showed us the advanced skill of coming down a flight of stairs backwards in his wheelchair – very impressive! We had members and their families travel from many counties to attend the day, and members as young as two years of age taking part. The feedback from the day was extremely positive, and the inclusive aspect of having the whole family involved was noted as a great element of the day. It was so nice to see families meet and chat, and the kids having such fun together. Thank you so much for the generous support of Branches who contributed financially so that their members could attend this training. Thanks also to Seán O’Kelly, Daniel Jordan and Anna Shinnors who helped out so well on the day, and I’m sure acted as great role models for our younger members. I believe this training offered members and their families a tangible opportunity to upskill in an essential aspect of their lives, and hopefully will greatly enhance their experience of using their wheelchairs and mobilising in their homes and communities. – Clare Riordan FSW South Dublin & Wicklow

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FUNDRAISING

STEAM RUN Naas to Cork

A group of steam engine enthusiasts under the umbrella group of “Irish Steam Engine Owners Association” drove 22 steam engines from Naas to Cork, leaving Naas on Saturday, May 23rd and arriving in Cork on Friday, May 29th after covering all of 130 miles over seven days.

have raised in access of €20,000. A huge thank you to all who participated, volunteers, our fundraising team and those who supported us financially, but the biggest thanks goes to all those who drove their beloved machines this long and gruelling distance for our very worthy cause. n

Above: Steam Run supported by SBHI Director Gerry Bell with his wife Breda and daughter Julieanne. Below: Amy Fitzsimons, Taoiseach Enda Kenny and Ivan Yates pictured at the launch of the Steam Engine Run.

A number of these machines came in from England and Scotland to participate and could be seen travelling along the route slowly over the seven days (23rd to 29th May). The drivers lived in their wagons on the road over the week, and their machines were on view to the public at the various overnight stop-offs along the route. We also visited schools on the route to give the children a taste of their agricultural heritage. A huge number of people came out and supported the drivers. The purpose of this event was to raise money for charity and the Irish Steam Engine Owners Association has done similar events on two previous occasions in 2000 and again in 2010 raising substantial sums both times. This year they chose to support us and we are delighted that they did so. The whole event was amazing. We met many interesting people on the route and found the public were very supportive and we

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SHINE

SHINE 2015â&#x20AC;Ś

Above: Aoife Leahy, Sean O'Kelly, Emma Brady, Katie Kelly, Marcus Ward, Ruairi Bailey, Emily Clarke, Lisa Newell, Hannah Stynes, Megan McGuckin, Majella McCarthy, Beatriz Agredona-Ovila, Rebecca Lynch. Left: Audrey Murphy, Alan Murphy, Eoin Robinson, Shane McDonagh, Helen Martin and Eoin Phelan. Below Left: Charlotte Doyle and James Kavanagh. Below Right: Catherine Murphy, Katie Kelly, Damien O'Meara and Band.

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SHINE

SHINE 2015… Thank You Everybody For Having Me At SHINE Summer Camp. Friday 14th of August 2015. – Ruth Barron Hey there you guys, it's your old buddy, pal and best friend Ruth Barron. Listen I did miss my own home but with you guys I had a mega time. And I bet you had a mega time with me too. I really enjoyed this week and I bet that the next times that we have together will be as good as the ones we had this year. We can go to more exciting places and do some more exciting stuff together like maybe making music together, or maybe going on little nature walks together or maybe going to the swimming pool together. It was rather strange being far, far away from my own home with my own favourite food, games, cartoons, T.V. shows and stuff like that, but with all you guys around me this week was just mega cool and there was a lot of cool stuff to see and do together with all of you guys, it was great fun doing all of the things that we had fun doing together. Like the disco night, the karaoke night, the movie night and even the quiz night, it's no wonder that my team What Does The Fox Say? came in second place. Our team tried really hard to win the whole thing. And the karaoke night was cool too. And the judges were really great at telling the performers whether they liked their songs or not. Inside Out was cool too. In fact everything was quite cool too. Please

Sandalwood Group - all volunteers plus participants. can we have a karaoke night again next time? That will be so cool. And maybe next time we can take a trip to a farm or a petting zoo next time as well. Wouldn’t that be cool! Seeing all the different creatures and hearing all their different noises and sounds. Like the mooing cows, the neighing ponies and horses, the braying donkeys, the happy quacking ducks, the hissing geese, the baaing sheep, the bleating goats, the barking dogs, the meowing cats and baby kittens and all the other amazing animals and creatures both big and little. The quiz night was cool too and all the other things we did were cool as

Sharon Foley, Audrey Murphy, Warda Sehar, Anita Flood and Deborah Hallissey

well, all the games that we played, the things we learned and discovered and even all the songs we sang and the dances we did at the disco too. And today I was so lucky to be back home in my own little home with anything that a 17year-old girl like me could possibly wish for. Like her own clothes, her own toys, her own food, her own bed and everything that she loves. And the cooks were just fantastic. I really liked the pizza and chips that they made. I was just over the moon that day. I think I felt like the cow in the Hey Diddle Diddle nursery rhyme poem. Even though I'm not a cow and cows don't eat chips and pizza, only humans do. Oh I had such a good time with you guys and girls. Oh and it was so much fun chatting to you about that tingly friendship feeling. Even though it's something that I made up it's something that's inside each and every one of us. You can't just feel it when you're at Summer Camp, you know you can feel it everywhere you go. Maybe at school, or maybe perhaps at home or maybe just maybe in the park. For me this tingly friendship feeling starts in the tips of my twinkle toes and goes all the way up up up right into my Ruth Barron heart. It was such a lovely week with you girls and guys. Absolutely positively super cool and totally fun and just so cool and fun and educational at the same time. I don't actually have a favourite part of this week I loved each and every moment of it. Even the funny bits that really made me laugh and giggle and smile and be happy and enjoy all the fun and stuff. Thank you so much again. – Love, Ruth

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SHINE

SHINE 2015…

Colma O'Donovan and Jenn Barrett.

Joe and Billy McBride.

A VERY GENEROUS GESTURE FROM A STRANGER We’ve just received some great photos from the very generous Billy McBride. Billy and his son, Joe, were in McDonalds on Saturday 29th August when the SHINE Away Week gang pulled up for refreshments as they travelled through Wales on their way back to the ferry port. Billy spontaneously paid for everybody’s meals – that was more than 15 people in total! We want to say a HUGE thanks for Billy and Joe for being such lovely people! Joe is proudly wearing his SBHI hat to school!

Isabel Keane, Sean O'Kelly, Megan McGuckin, Rebecca Lynch and Majella McCarthy.

“My son (Joe) and I were more than pleased to offer breakfast to your group. Joe and I have a routine of visiting McDonalds every Saturday before we go swimming, and this week following your visit, Joe was asking for the group again, wondering what time you were going to arrive. I did explain that you would probably not be over this week, but promised him that if and when you do visit Anglesey again, I would take the time to introduce ourselves properly, hopefully in the not do distant future”. n Joe McBride proudly wearing his SBHI hat.

Lemongrass Week Group.

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AROUND THE COUNTRY

AROUND THE COUNTRY DONEGAL

Donegal Branch 10k: Erin Harold, Ballybofey, the Gallagher family, Killybegs, with Caroline Laverty.

Main Head to Mizen Head Cycle presenting a cheque to Erin Harold.

Donegal Branch 10k: James Laverty and pal Jacque Dunphy heading for the finish line.

Congratulations to Maria Gallagher and Paddy McGrien who were married recently.

Vintage Car and Fun Run at Harolds, Ballybofey.

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AROUND THE COUNTRY

DUBLIN On the last Saturday of each month three "party buses" carrying a very enthusiastic gang hits The Red Cow for a night of fun, drinks, and live music. If you're looking for an early night this is not the place to be, but if you're interested in joining in the fun just let us know! We also organise a very civilised lunch in the Gibson Hotel each month, which is very popular. Karen Gibney coordinates these events, and we thank her for her ongoing commitment to our adult members. Thirty of our Branch members attended the Shine Summer Projects this summer and on their behalf we would like to thank the National Organisation for an excellently run, active holiday. All participants benefit greatly from the sense of independence these weeks provide. Our fundraising was given a huge boost this year when we were once again given Dun Laoghaire Golf Course for a day to run a Golf Classic. We had 160 golfers on the day in beautiful weather. We also used the day as an awareness opportunity, and many of our members attended the BBQ. Gerry Maguire spoke on our behalf, giving a very honest and upbeat account of his experience of living with spina bifida.

Dublin Branch members carol singing.

During the year our members have enjoyed the Valentines Disco, Andrea's fabulous Fashion Show, and at this time of the year we are looking forward to the big Halloween night out. Christmas is then just around the corner, and we are planning our carol singing in St. Stephen's Green Shopping Centre, which has become the highlight of the season and the best fun all year – come and join us! At our AGM in March, Gerry Maguire was elected Chair of the Dublin Branch, Ann Reid (Vice-Chair), Sarah McGuckian (Secretary), Karen Gibney (Youth Officer) and Siobhan O'Kelly (Treasurer). Any of us can be contacted through the Dublin Branch office in Clonshaugh (01-8485227). On a sad note, we send our sympathies to the family and friends of David O'Hara RIP. We also remember Jessica Bingham whom we all miss so much. – Siobhan O’Kelly

Dublin Branch: Sean, Therese and Derek from Dublin Branch meet Irish rugby heroes Jonny Sexton, Dave Kearney and Jamie Heaslip.

John Williams and Helen Riney at Dun Laoghaire Golf Club.

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Megan McGuckian and Sean O'Kelly at Dun Laoghaire Golf Club

AROUND THE COUNTRY

KILDARE

Left: Julieanne Bell and Martin Fahey, Kildare Branch, at chocolate factory. Right: Liz Scully and Fraga Veighey, Kildare, at chocolate factory.

Above: Martin Whelan and Caoimhe Lalor, Kildare Branch, at chocolate factory.

Eddie and Lisa Brett at the Kildare family day in Lullymore Heritage Park.

Edel Foley and Lisa Miley, Kildare Branch, at chocolate factory.

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AROUND THE COUNTRY

KILDARE

Aisling, Molly, Edel and Teresa Morrissey, Kildare Branch, visit to chocolate factory.

Carol Ann, Oisin and Alina Clarke, Kildare family day, at Lullymore Heritage Park.

Aishling and Paula Mulhall, Kildare Branch, visit to chocolate factory.

Sean Keightly, Kildare, family day at Lullymore Heritage Park.

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Daniel Riordan and Jamie Kelly, Kildare Branch, visit to chocolate factory.

AROUND THE COUNTRY

LOUTH - MEATH

Members of Louth-Meath Branch enjoying a recent Family Day.

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AROUND THE COUNTRY John Campbell from St. Peter's National School, Dromiskin, has been crowned winner of the Louth heat of the Eason 2015 Spelling Bee competition which took place in Dundalk Grammar School. Above: John meets Ryan Tubridy. Right: Trevor Proctor, Manager, Eason Shop, Marshes Shopping Centre, presents a prize to John Campbell, winner of the Louth County Spelling Bee Competition held in Dundalk Grammar School, along with Catherine Campbell and School Principal, Pat Mulligan.

SOUTH EAST If any parents/carers of children with Spina Bifida and/or Hydrocephalus born between 1996-2005 wish to take part in an assessment of needs study please contact me on 087-6527175 or jmullane@sbhi.ie and I can provide you and the teen with further information. If any parents/carers are interested in attending a “Relax Kids” and “Music & Me” class in Wexford for children aged 0-5 please contact me as I would love to get this group up and running soon. It will be of a Wednesday morning. Please contact 087-6527175 or jmullane@sbhi.ie for further details and to register. Coffee mornings are being held in Kilkenny once a month at present for families. Should you wish to be added to the text list you can let me know on 0876527175. We meet in MacDonagh Junction. New faces are always welcome from all areas. Coffee mornings are being held in Wexford once a month at present for families. Should you wish to be added to the text list you can let me know on 0876527175. We meet in the Riverside Park Hotel, Enniscorthy. New faces are always welcome from all areas. Our young adult group is meeting again after a summer break. We meet in Wexford once a month and new faces are always welcome to join us. It is always an enjoyable evening. Please contact me on 087-6527175 if you wish to come along. A reminder to all parents/carers, should you attend Temple Street for any issues

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relating to Spina Bifida and/or Hydrocephalus and receive a bill for this please contact me immediately. Spina Bifida and Hydrocephalus related issues should not be billed and I currently have a number of parents/carers still getting charged. Please also make sure to contact me should you feel you have paid for a bill you should not have. You can do so on 087-6527175 or jmullane@sbhi.ie. I would like to congratulate all my members who have started a new chapter in their lives, lots of people started in montessori, primary and secondary school, and college. Well done to you all and I hope you make some fantastic new friends. Could anyone in Kilkenny, Waterford and Carlow who would be willing to help out with church-gate collections throughout the year please contact me. We have no branches in these areas and rely heavily on the support of our members and the local communities to help out. You can do so at 087-6527175 or jmullane@sbhi.ie. In July this year a Golf Classic was run in aid of SBHI, it was a wonderful two days and a total of €3,260 was raised for the organisation. Thank you to all who played and donated to the cause. A special thank you to Michael Mullane for organising the classic. Congratulations to Kyle Gallagher from Kilkenny. Kyle is one of the few children chosen to represent Enable Ireland in their new “Give up your Clothes for Good” campaign. Kyle got to go to London for a photoshoot and now has his picture in

Kyle Gallagher various TK Maxx stores around the country. Well done Kyle, we are all very proud of you! If any parent/carer has a Ready Racer or a Zip Zac going spare, can they please contact me as I have had requests from a number of parents regarding these. They will be very well looked after and used regularly by some very grateful children! If you do then please contact me on 0876527175. – Jane Mullane

AROUND THE COUNTRY

CORK-KERRY West Cork Member Blog Hello, my name is Majella McCarthy. My family consists of my mother, father, my twin brother and my adorable nephew called Oisin. I live in Dunmanway, Co. Cork. I am a member of SBHI as I have Hydrocephalus.

Medical Records in Bantry Hospital which was Work Experience from a course I was doing. I worked in Body Works in Bantry where I saw make-up done and people’s nails painted. I have achieved a lot in my early years. I learnt to walk when I was three and a half years old, I passed my driving test when it was -9 degrees, I had heart surgery in 1996 to close a valve in my heart. I passed my Junior Certificate and Leaving Certificate, I have won many singing competitions.

I became a member as I have a shunt in and I saw that there was a meeting on in Bandon, near where I live, three years ago. Since joining I have gained confidence and courage. I really enjoy the Adult Group and getting to know more friends. Every month we go on a night out in Cork, I really look forward to it. I'm so grateful to have met Deirdre Gallagher our Support Worker. She has made me feel so much more confident in taking part in things.

I am currently writing a book with guidance from Deirdre Gallagher, my Family Support Worker. I am writing the book to show people that have a similar story to me that they can pull through and smile and say I'm alive. I want to let people know that people with disabilities try to smile through many situations and are probably the strongest human beings they will ever meet. I want the world to know that Majella McCarthy exists so please don't ignore me.

I work as a Musical Entertainer in a nursing home. The patients light up when they see me coming as I play the accordion and violin and sing to them. I also work in a supermarket one day in the week. I've had many work placements throughout the years. I worked in a baking emporium in Dunmanway, I worked in

Majella McCarthy

– Majella McCarthy

A Warm Welcome to our Newest Member in Kerry! Hello, my name is Seamus O’Sullivan, I am from Bedford, just outside Listowel. I am 32 years old. I have recently become a member of SBHI, and am looking forward to working with Deirdre Gallagher. I think I am the newest Kerry member, I believe there is lots to look forward to! I have been attending Enable Ireland adult services since 2001. I attend three days a week at present and am currently involved in our allotment project, our blog, a family-tree programme, and numerous art projects. I am a keen photographer and held an exhibition of my work last year. Minister Jimmy Deenihan opened the exhibition. I am looking forward to meeting new people and having someone to talk with about day-to-day issues. – Seamus O’Sullivan

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O rthopaedics

Spina Bifida Hydrocephalus Ireland - Providing orthopaedic footwear and associated orthotic appliances for over 20 years

ABOUT US he SBHI Orthopaedic Footwear Centre was established in the mid 1980s. Its initial purpose was to provide an efficient service to its members in acquiring suitable orthopaedic footwear and appliances. It subsequently expanded its services to include all aspects of orthopaedic footwear, including specialist shoes designed for diabetics.

SERVICES The main services provided at the Centre are: All aspects of orthopaedic footwear and orthotic devices An extensive range of fashionable, orthopaedic shoes for children Orthotic supports for sports injuries A full repair service. The footwear can be made to measure, or quality off-the-shelf footwear can be tailored to meet specific requirements. The centre offers a wide variety of styles to suit every occasion and for all ages. All work is carried out by fully qualified Orthopaedic Technicians.

COMFORT AND STYLE The SBHI Orthopaedic Footwear Centre supplies a range of footwear and appliances that have all the required orthopaedic features for a perfect fit; the footwear also retains a large element of style which is so important to all our clients.

SELF-CARE OF FEET 1) Check for any breakdowns (i.e. pressure sores, ulcers, blisters)

particularly under the toes and the base of the feet at least once or twice a week. Hint: use a mirror if needed to inspect the feet. Possibly check your feet after showering. What you should look for when inspecting your feet: Any redness and change of colour Swelling that is not usually present Any break in skin, especially on the soles of the feet Any accumulation of hard skin on the soles of the feet Any other problems which may occur 2) Be very careful of banging or knocking feet when transferring. 3) Make sure you have supportive fitting shoes in order to prevent friction sores or blistering. 4) After showering ensure that your feet are dried properly (particularly between your toes).

from a Doctor or Physiotherapist/ Occupational Therapist. Private clients do not need a referral.

CLINICS Regular clinics are held at the following locations: SBHI National Resource Centre, Clondalkin, Dublin 22 St. Michael's Houses throughout Dublin Cheeverstown House, Templeogue, Dublin 6w. A fully-trained Orthotist is in attendance at all clinics to ensure accurate fittings and mouldings. Private clinics can also be catered for. To make an appointment get in touch with us via our contact details below.

ENTITLEMENTS People who are covered under the Medical Card/Long Term Illness Scheme may be entitled to services free of charge on condition that they meet the requirements of the HSE. The Centre offers advice on these entitlements, in a sympathetic, efficient and friendly manner. First-time clients availing of our services under the Medical/Long Term Illness Card must have a referral letter from a Physiotherapist, Orthopaedic Surgeon or Occupational Therapist. Repeat clients must have a referral

Footwear CEO: George Kennedy, gkennedy@sbhi.ie, 087 915 7613. Centre

Manager: Lorna Whelan, Telephone: lwhelan@sbhi.ie, 086 851 7518.

01-4572326 Administrator: Karen Malone, kmalone@sbhi.ie, 01 457 2326 w w w .sbhi.ie