Special Needs

A birthday present I wish I could deliver

My friend’s son Jack was 6 last week.  He had great fun celebrating with his family and friends and he got some brilliant presents too. But there is one birthday present I dearly wish Jack could have gotten, which is the news that he will have a full-time SNA when he starts school in September.  Jack has Down’s Syndrome and CINCA and has high care needs.  He is classified as having severe to profound level of disability.  He’s blond and blue-eyed with the most infectious grin ever.  He is also a complete heartstealer, I know, I’ve had the very real pleasure of spending time with Jack.

Like many other five and six year olds, Jack is supposed to be starting school in September. Because of his condition and level of needs, Jack needs to go to a special school and he has been offered a place in the nearest one to his home.    While it is great that Jack has this place, he cannot take it up unless he has a full-time SNA.  Jack cannot walk or talk, he is peg fed and wears nappies so his need for an SNA is obvious.

The process by which SNAs are appointed and assigned to children is too convoluted to go into here.  Jack’s mother has gone through this stressful process over the last few months only to be told that Jack will  be able to attend school for just one hour per day, as that is all the SNA provision that will be available to him.

Now I am sure everyone who reads this will be in agreement that this is an intolerable and appalling situation.  We all know that Ireland is in a dire financial position and we are all only too well aware that cuts are necessary to meet the conditions of the EU/IMF bailout.  (I am not going into the rights and wrongs of that issue here!)  But in the same week that Jack celebrated his sixth birthday, it emerged that Brendan Howlin, Minister for Public Expenditure, has spent €47,000 on the refurbishment of his constituency office in Wexford and his ministerial office in Dublin. Read more about this here.

Maybe I am looking at things too simplistically, but to me this kind of expenditure at a time when the country is apparently broke is just a waste of money.  Money that could be better utilised to provide an SNA for Jack so that he can go to school every day just like every other six year old.

Life has been hard for Jack, he spent most of the first three years of his life in Crumlin hospital fighting just to stay alive.  Now the fight is for him to receive the education that is his by right.

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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?