Special Needs

And so the fight continues….

Wednesday 13th July,  Oldcastle, Co. Meath.  A beautiful warm sunny morning, just as it should be for the middle of July.  July.  My daughter’s birth month and she has just turned 4.  Another milestone that a few years ago we didn’t know if we would ever see.  I load Fionnuala and her heavy special needs buggy into my little car and head for Mullingar.  Our ultimate destination is Dublin as we are taking part in a protest against the cuts in special needs education.  It might seem odd to travel from the Meath-Cavan border to Dublin via Mullingar but we’re going by train and Mullingar is our nearest station.  It takes about 40 minutes to get there.  We take the Castlepollard road out of Oldcastle, bypassing Fore and its seven wonders.  There’s nothing worth listening to on the radio so I check the CD player – first CD up is Horslips ‘Treasury’.  The first track that comes on is ‘Furniture’, I haven’t listened to this in a while and I’m humming along when they launch into the chorus from ‘Oró Sé Do Bheatha ‘Bhaile’ and I feel the spirit of Gráinne Mhaol surging through me, putting me into fighting mode.  Fionnuala is clapping her hands and singing away in her car seat, oblivious to her mother communing with long-dead Irish women.  Skip through a track or two and next up is  ‘Dearg Doom’ – this was the first Horslips song I ever heard – and now the spirit of Queen Meabh is right up there with Gráinne Mhaol.  The blood is pumping, the adrenalin is rushing, I feel like I can take on the world and win!!  And we’ve only been on the road for half an hour…

Eventually I calm down somewhat, get us to the train and safely to Dublin.  After a lovely lunch we stroll casually down to Kildare Street.  The protest  – organised by the Special Needs Parents Association amongst others – is due to start at 3pm.  I figure we’ll be there by about 2.40 so at least there will be a few people ready by 3pm.  We turn into Molesworth Street and are enjoying the (rare) sunshine when it hits me like a thunderbolt.  There are tons of people outside the Dáil.  Parents, children, teachers, SNAs, buggies and wheelchairs of all shapes and sizes.  There must be a few hundred people there already!  I am both amazed and delighted.  Many of us have been trying to encourage people who don’t have or know a child with special needs to join us for this protest.  I manage to locate some good friends and Fionnuala and I take our places just outside the gates to Leinster House.  More and more people arrive, the Gardaí close off the lower half of Molesworth Street and still the people keep coming.  We are asked to move over from Kildare Street to Molesworth Street for the rally and by now it is a pretty impressive sight.  (The press has varying numbers the next day but I believe there was approx 1000 people there).  TD’s are arriving out of Leinster House, members of the Technical Group of Independent TD’s, members of Sinn Féin, I think I see a couple of Labour TD’s.  No Fianna Fáilers or Fine Gaelers.  Or not that I could see anyway.  The vibe is good natured, people are angry at the cuts to SNA positions, but its a positive kind of anger.  Plus there are a lot of children present and we want to keep this a family-friendly protest.

The speeches begin and they are all received positively. Finian McGrath TD spoke very well saying that if people were not for children with special needs then they were against them.  The crowd are in total agreement with him.  Lorraine Dempsey from the Special Needs Parents Association speaks just prior to a meeting with Minister Cannon and other government TD’s.  Shane Ross, Mick Wallace, Catherine Murphy, other TD’s too many to list here, teachers, SNAs, a gutsy young boy with autism and his mum, loads of people speak and the crowd applaud. Its a sunny day, we’re all too hot, the children are getting bored but at least we feel like we’re getting the chance to have our say.

Clare Daly TD opens up the stage for anyone who wants to address the crowd (thinning out a little bit now, its after 5pm).  And with my ego to the fore, I decide to go up. I’ve no real idea what I’m going to say but what the hell, I’ll just keep my little daughter’s face in my mind’s eye and something will come to me.  There are two speakers before me and then its my turn.  Momentarily I panic.  I introduce myself to the crowd and then it hits me what I want to say…..

“I don’t want to be here today.”  Not the usual opening line to address a rally with I grant you but I elaborate on my theme and speak for a few minutes.  I get lots of applause and two TD’s tell me I spoke well.  I get back to my daughter and friends to lots of hugs and congratulations.  Phew, maybe I didn’t make a class eejit of myself!  My dear friend Aisling then speaks very movingly and passionately about her son Jack and their fight for Jack to have the education he is entitled to.  Eventually the rally is over and a group of us retire to Buswells to relax, cool down, collect our thoughts and celebrate.  After all, its not every day we campaign outside the Dáil and address a rally.  We are all thrilled at the turnout and we’re on a high.

After an hour or so Fionnuala and I head back to Connolly station to start our journey home.  Its been a long day and we are both tired.  We finally get back just before 9 having left home at 10 that morning.  She goes straight to sleep and I fill my husband in on the day’s events while we wait for the 9pm news.  Yay! We got some coverage and another good friend of ours is interviewed with her children.  Then we hear that the Govt motion to maintain the cuts already announced in SNA positions has been won in the Dáil by 103 votes to 47 and the high that I’ve been on all day starts to fade.  I knew there was virtually no chance of the motion by the technical group (to reverse the cuts) winning but there’s always a glimmer of hope.  I spend the next hour or so chatting with friends online talking over the day, swapping news and photos.  And so to bed.

But the next morning I feel terrible.  Awful.  Exhausted. Worn out, weary, tired tired tired of having to fight.  And sick to my stomach at the way our children are being treated. And I’m not the only one.  Facebook is full of mums and dads who feel the exact same way I do.  And that brings me back to my speech at the rally.  None of us WANTED to be there last Wednesday.  Its not easy taking a child with special needs to the Dáil, having to manoeuvre buggies or wheelchairs, cater for a child who might be peg fed or who might have a trach tube in place.  Or who has autism and doesn’t cope well with crowds.  Or who has seizures. Or who is simply unable to understand why we are there and why she has to sit in her buggy for Mum for over two long hours, pacified only with white chocolate buttons.  But we did it.  Parents and supporters from all over the country came, from Donegal, Meath, Kildare, Wexford, Wicklow, Louth, Kilkenny, Cork, Galway…. and that’s only the ones I know about. I’m sure pretty much every one of the counties in this State was represented in the crowd last Wednesday.

We did it because we have to fight for our children to receive the education that they are entitled to. We did it because we want our children to be as independent as possible and to enjoy life as much as possible.  We came in our hundreds on one of the hottest days of the year to stand outside our national parliament and say to the politicians and to the people of this country “We are here.  Our children are here.  They are citizens of this country too and they have the right to an education.  Listen to us.  Support us.  Reverse these cuts.”

But so far they haven’t.  Parents all over the country are still anxiously waiting to hear if their child will have an SNA in September.  And the new school year is only a few weeks away….  Other parents that I know have already learned that their child will have reduced SNA hours or none at all.  Yet these children’s needs have not changed. I mentioned my friend Aisling and her son Jack earlier. Jack has Down’s Syndrome and CINCA  Syndrome.  He has high care needs and is classed at severe to profound level of disability.  He has a place in a special school for September but so far his mother has been told he will only be able to attend for one hour each day because of the SNA situation.  How in the 21st century can this be considered acceptable?  Jack has as much right to an education as any other child.  I could cite numerous other cases all of which illustrate just how badly our children are being let down by the Irish State.

We all know the country is in a dire financial mess.  We are all “taking the hit” and “sharing the pain”.  But why are children with special needs being targeted?  They are part of this country’s future too.  I know I’m not going to get answers to these questions here.  I know that the Government will not give me a straight answer.  But we live – allegedly – in a democracy and so we will use all the tools available to us to have our voices, and more importantly those of our children, heard.

I didn’t want to be at the Dáil last week.  None of us did.  But we went and we’ll be there again and again and again as long as we have to.  Cuts to special needs education affect every school and potentially every child in the country.  Will you join us next time?


11 thoughts on “And so the fight continues….

  1. I will be there the next time and the next and the next, very well written and heartfelt post, speaks for a lot of us who were there. I am sorry I didn’t get to hear your speech but as you say some children just can’t cope for long periods in crowds and my son was one of them.

    1. Very well written and from the heart, we were also there and will be there again and again and again until they reverse the CAP – and they will reverse it because we will leave them no other choice ! My husband Rod and I were on “Midweek” on the same edition as your friend Aishling – she did a great job. Take good care. Jane X

  2. Your enthusiasm is infectious….. we were there and will continue to be there…….. Its not a choice its a lifepath!!!

  3. Well done…great account of that marvelous day, when we all got the chance to make our voices heard! It felt powerful. I couldn’t hear all the speeches from our ‘we will not be moved’ stance at the Dail Gates, but I did hear your opening line! I’m so glad you wrote this – I was hoping someone would, I concentrated my energies on writing about the cuts and the VFM report- people need to realise how difficult it is for Parents of Special needs children to actually get out there and protest. makes us an an easy target for cuts.

    That vote just means that we have to get out there again in Sptember… louder and in larger numbers!!

    Let’s rally some support! As I keep saying on our school facebook page : ‘These cuts affect ALL children in tha class’

  4. Wow, I am so sorry you have to fight for such a basic right for your children, I knew something was upsetting everyone in Ireland at the moment but I didn’t understand what until I read your post.

    You’ve made me realize just how lucky we are over here in Australia, all our children get to go to school fulltime. Not everyone in mainstream gets all the added support that some people feel they need but as a nation we are clearly better off.

    I hope that you will eventually be heard and everyone will get what they need.

  5. Thank you for the very eloquent account of your struggles. I for one, found it quite moving.
    There are many of us who fully support the campaign against these cuts and some are part of a ‘ground’ movement called (SNAP-Special Needs Assistants & Parents) who are organising ourselves into local groups with a National network and a National campaign..
    Our local Facebook page is SNAP-Kilkenny & we will soon be joined on Facebook with other branches/groups too so that you & your friends and family & other parents may join your local group/committee and take part in a National Campaign this September.

    Lesley(SNAP-Kilkenny committee member)

  6. Dear All

    We are a husband and wife team who run a website called http://www.myspecialneeds.ie – a site that advocates for people with Special Needs.

    Since we hosted a very successful conference ‘Positive Actions and Attitudes for Inclusion ‘ last October – we have reflected long and hard about how we can raise the profile of people with Special Needs, and how we can positively influence Government policy, to prevent people with Special Needs from carrying an unfair burden in our now bankrupt state.

    To that end we have come up with the idea of planning and hosting a unique Global event for 2012.

    With the working title of Special Needs Unite we plan to host a rally for 100,000 people in Dublin on Sunday August 5th 2012 at a venue to be announced. The event is designed to bring together for one day -all the associations that advocate for people with disabilities of which there are approximately 600 in Ireland.

    The objectives of the rally are many with the key objectives being:

    1. To raise Awareness of Special Needs People and their issues.

    2. To Unite all the special needs representative bodies for 1 day with
    one voice.

    3. To ‘Normalise’ or ‘mainstre
    am’ special needs-i.e. people’s special
    needs should not define them
    4. To ensure that Government do not neglect special needs issues – we have a voice and a vote and will use both.

    5. To ensure that it is a day to remember and a defining moment in the history of Special Needs Advocacy.

    The afternoon will host live bands ( we hope to get some or all of the following:Boyzone,Westlife, Jedward,U2) , funfairs, face painting, music,
    dance and games. It will also feature Speakers and contributors from around the globe , and celebrity actor Colin Farrell has already agreed to be our Keynote Speaker.

    Fingal Community TV (FCTV) are our partners in this event and they are making a documentary about the making of the event – and filming has already begun.

    But it gets even better! – we have spoken with Vicki Graff and Gregory Ruzzin-both of whom are professors at Loyola Marymount University in Los Angeles –
    and they suggested that we run simultaneous events in LA, South Africa, Hong Kong, UK and Finland. Vicki has already said it will happen in LA and is
    confident that South Africa will also happen.
    Although there is a time difference we can synchronise a huge fire works display simultaneously around the globe at a certain time – albeit it will
    be the middle of the night for some venue/venues.

    To all intents and purposes – it will be the ‘Live Aid’ of Special needs, it will be a Global event and more importantly it will give us all the chance to keep the plight of Special Needs people in the mainstream news for the next 13 months. We are planning a massive publicity campaign across all media channels over the next 13 months.

    Many thanks
    Yours sincerely
    Audrey Boyle
    (Mobile 087 682 2030)

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