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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?

A learning curve that never ends

I have a little daughter with special needs.  She is nearly four now and is our absolute pride and joy.  She is funny, adorable, cute as the proverbial button, cheeky, demanding, learning new things all the time, and just developing a highly irritating whinge when she doesn’t get her own way.  Just like the average nearly four year old!!  She has Dandy-Walker syndrome, arrested hydrocephalus, infantile spasms and global developmental delay.  She is the centre of our world, and like most other parents, I can scarcely remember a time when she wasn’t here.  All parents will agree that your life changes beyond all imagining when you have a child.  In our case our lives took a direction we could never have foreseen.

The world we were so happily inhabiting ended for us on April 18th 2007.  We had found the house of our dreams and had applied for planning permission to extend it.  We were in a secure financial position.  We were two years married and expecting a much wanted baby.  Life could not have been any sweeter.  And then in the moment that it took an obstetrician to move the wand of an ultrasound scanner over our unborn baby’s head everything changed.  He had been chatting away to us all the way through the scan, asking us about names for the baby and generally putting us at our ease.  Then the instant he scanned the little head, he stopped talking and we knew, with the gut-wrenching certainty that everything had changed irrevocably, that something was very very wrong.  He asked us to sit down and told us as gently as anyone can possibly deliver terrible news, that our baby had hydrocephalus, or water on the brain as it is commonly known.  We sat in the consulting room with the obstetrician and a senior midwife for  – I have no idea how long.  I remember asking would our baby die?  Would the baby have brain damage?  Learning difficulties?  Kindly and gently he explained to us that he couldn’t tell us because it was simply impossible to tell.  I remember crying and crying and crying.  Then eventually having to leave the room – it was a busy antenatal clinic – and walk with my husband and the midwife into a corridor full of other pregnant women.  We were taken to another room with the midwife who also handled us with such gentleness and care.  After some time – again I’ve no idea – we left the hospital. They arranged an appointment for us to see a foetal anomaly specialist in Dublin’s Rotunda hospital which would be in a week. Later that night we did what everyone tells you not to do and we googled and read up on hydrocephalus and what it might mean for our baby.  Eventually we convinced ourselves that maybe the obs had made a mistake or wasn’t sure and that was why we were going to see a specialist.  And even if the baby did have hydrocephalus, we read about shunts and therapies and were sure everything would be ok.  The baby might have some problems but all would be fine and we’d get through it.

Clutching onto that manufactured positivity is what got us through the next week until we went to Dublin to see the specialist.  And then our world which had moved from blissful to fragile in the merest second a week earlier, now crumbled and fell apart completely.  That day  I had another scan, far more detailed than the one in our local hospital, which told us we were having a little daughter.  The scan took 45 mins for most of which I had to lie on my back (junior being breech and facing in) and I was 29 weeks pregnant.  Any mother reading this will appreciate how physically uncomfortable that was.  Once that scan was over we sat in a very plush office in a building at the Rotunda site (we’d gone private for this in order to have the appointment as quickly as possible) and listened to an extremely nice and hugely knowledgeable man tell us that not only did our little girl have hydrocephalus, she also had Dandy-Walker Syndrome.  I’m not going to go into great technical detail here, but it is a neurological condition that affects the cerebellum.  In our baby’s case her cerebellum was tiny  – far smaller than it should have been – and there was a cyst where the cerebellum should have grown.  By this stage we were both crying.  I think it was the first time I had ever seen tears stream down my husband’s face.  We asked innumerable questions, our anguish and pain spilling out in a desperate search for answers.  The specialist told us everything he could but the phrase that stuck with us the most was that, in his opinion, the prognosis was “poor at best”.  Four years later I still don’t have the words to adequately describe how we felt.  Shocked, scared, bewildered, sick, heartbroken…..none of these come even close to explaining the maelstrom of emotion that swept our world away that day.

I’m not going to go into the minutiae of the remainder of my pregnancy, all I will say is that over the remaining 10 weeks and 2 days my mind kept running back and forth over three questions:  why did this happen to us?  would I be strong enough to raise a child with disabilities?  what kind of life was our little girl going to have?

The first is something of a rhetorical question.  We found out a couple of years later that Fionnuala (our daughter) has an extremely rare autosomal recessive genetic disorder called Buttiens-Fryns Syndrome and that is what caused her to have Dandy-Walker Syndrome.  I want to point out here that the vast majority of people with Dandy-Walker DO NOT have Buttiens-Fryns.  That just happens to be our experience.  But the question of why?  goes beyond the literal how did this happen? to why did this happen to us?  Yes we all know that there are babies born with disabilities every day.  And yes we all know too that people with disabilities are just another part of the community (or least should be).  And that someone has to be the ‘one’ in the ‘million to one’.  But knowing all of that logically and analytically does not help us to know it emotionally.  I still have times when the unfairness of it all hits me again and when I hold my daughter on my lap those times, all I can think is “why did this have to happen to you?”

The second question was less rhetorical – I determined that I would be strong enough.  Little did I know then just how strong I – and my husband – would have to be.  It was at this point that the internet really became important to me.  Without the help, love and support of countless women  – the vast majority of whom I have never and probably will never meet IRL – on sites like BabyCentre.co.uk and most especially magicmum.com, I would have found the remainder of my pregnancy infinitely harder than it was.  That’s not to say having these women to chat to made it all go away. Far from it.  But to be able to chat online to women who had been where I was and whose babies (albeit with different conditions) were now 1 or 2 or in pre-school, gave me hope and self-belief that if they could do this then there was no reason why I couldn’t as well.  I’m still a member of MagicMum and I hope that I have helped other women through that awful time as I was helped through it.

I’ll come back to the point about having to be stronger than we ever thought possible in a minute.  The third question was what kind of life would she have.  We knew nothing about provision for children with disabilities in Ireland.  But we are both intelligent people and we figured we’d learn.  And by god have we learnt.  We have learnt that children with special needs benefit hugely from early intervention.  Fionnuala was referred to the early intervention team when she was just three weeks old.  This was courtesy of her paediatrician in Cavan who initially met us 2 weeks before she was born and who has excellently overseen her care ever since.  At 4 months old Fionnuala began therapies with Enable Ireland, physiotherapy and occupational therapy to start with and later speech and language therapy as well.  We have learnt however, that not all children receive intervention as quickly as Fionnuala did and that some are waiting months, and in some cases years, to be seen by the relevant therapist.  If early intervention is considered (rightly) to be so vital, then why are children waiting so long?

We learnt new languages and new jargon – we rarely say ‘Dandy-Walker Syndrome’ to each other now, its DWS in our home.  We have learnt and understood terms like hydrocephalus, ataxia, macrocephaly, agenesis of the corpus callosum (which for months came out as coliseum whenever I tried to say it!) etc etc etc.  We have learnt just how overcrowded and busy this country’s children’s hospitals are.  Fionnuala is an out-patient of both Temple Street and Crumlin hospitals as well as Cavan General and has received excellent care in all.  But I have lost count of the interminable hours we have wasted away in waiting rooms, in stuffy and overcrowded corridors just waiting for another check-up, another assessment.  Every time we have an appointment I come away in awe of the work done by the staff and how they – especially the nurses – manage to keep going and to be patient and welcoming to each overwrought family, to put each nervous or scared child at their ease.  I know I could not do their job.

One of the hardest things we have learnt is that a lot of people don’t know how to react to you when you tell them that you are expecting a baby who will have a significant level of disability.  Some say nothing, for fear of upsetting you still further.  Some comment that “God only sends special children to special people”  – well I know some would find that comforting but I find it patronising and irritating.  Once the baby has arrived and everyone (ourselves, therapists, medics) have a much clearer idea of how she is doing, some others go into a form of denial “I told you there was nothing wrong with that child” etc…..

And we are still learning as Fionnuala carries on her merry way.  She is going to be 4 in a few weeks and since September of last year has been attending a local mainstream pre-school with the help of a pre-school assistant (essentially a SNA or Special Needs Assistant).  This has done a huge amount for her, she has friends there now and her social development has come on in leaps and bounds.  It has also – most importantly – helped her to learn a measure of independence, in that she can be away from us for a few hours and everything will be fine.  That is the first step on a very long road.

Somewhat naively we thought that it would be straightforward enough for Fionnuala to get all the help she would need for her formal educational career.  But we are now learning from friends who have children with special needs, from the work of the Special Needs Parents Association and from cases we read of in the media, that it is not so straightforward.  We knew that many children with special educational needs and disabilities of all kinds are now integrated into mainstream schools and that resource hours and SNA posts were available to give these children all the assistance they would need to help them have that which is a basic right – an education.  But we have learnt that there is a cap on SNA posts and resource hours which is affecting children all over the country.  Just last week good friends of ours were told that their daughter who has a place in mainstream national school for September will not have a full-time SNA and they are currently waiting to hear how many hours she will receive.  The stress this kind of treatment puts on a family who have a child with special needs is indescribable.

Fionnuala is likely to attend a special school when the time comes, and that is fine with us if it is the best place for her to develop and reach her full potential.  But even special schools are not immune from these cuts and shortages.  The son of other good friends of ours went 29 school days earlier this year without full SNA help in a special school owing to cuts.  Another little boy we know is waiting to hear if he will get the help he needs to attend the same school in September.

So we are still learning.  But now we are learning probably the hardest lesson of all for parents of children with special needs – that we are going to have to fight for everything.  And we are strong enough.  We’ve had to be to get this far.  But at times I despair of my strength lasting out.  It has to, I have no choice.

Being a parent is hard work.  Being the parent of a child with special needs is so much harder.  But having to fight, to march, to campaign, to endlessly email politicians, educational officers, health providers, civil servants, just to get basic health and education services for your child makes it all far harder than it needs to be.  And it is nothing short of an insult to our children and to us, their parents, that we have to do this.

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