Parenting · Special Needs

It’s oh so quiet

It’s oh so still.  I’m all alone and so peaceful until…… (Apologies to Bjork!)

Yes it’s the first day of the school year and many parents all over Ireland are heaving huge sighs of relief, we did it, we survived the summer and now normal service can be resumed.  A lot of parents I know really miss their children in term time and find days like today a bit hard.  I freely admit that while I adore and cherish my beautiful daughter I find the summer holidays in particular hard at times and I love to see her going back to school.  This year the weather really wasn’t great and there’s no pleasure in taking a wheelchair out in the rain.  We didn’t have a break away as we are (or more correctly my husband is) doing a lot of work on the house, so it felt like a looooong time.  Or at least it did to me.  What I found the hardest was the lack of headspace.  My daughter is not a particularly demanding child, or even hard to amuse and deal with, its just that her level of disability means she needs me a lot.  That’s fine and I am well used to it but its still a bit of a shock to the system to not have any free time really.  As she is my only child, once she is at school my time is largely my own.  (housework, gardening, cooking, community work, historical research to keep my brain going, crafting….)  So even though I knew that wouldn’t be the case over the summer it still hit me quite hard and I am afraid to say I was a bit short-tempered at times as a result.

Then it occurred to me as I was driving home from taking her to school (I like to take her in on the first day) that she probably (hopefully) hadn’t noticed any of my stressy frustratedness at all.  So maybe I need to plan better for the summer break?  Clear the decks of various projects over the months leading up to it and say to myself, ok this is downtime and even though I might not get much headspace – to blog for example! – it might not matter so much.  Hmmmm.  Something to ponder while I enjoy my third cuppa in peace – bliss!

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Parenting · Special Needs

If your child goes to special school……

When it became apparent that our little girl would not be able to attend mainstream school owing to the level of her disabilities, we adjusted our ideas and hopes for her and began to explore what options were open to us.  In our county, there are two special schools, one of which caters for her level of disability.  It is an excellent school and she is very happy and settled there.  There are some things that I hadn’t really thought about prior to her starting school that you miss out on when your child attends special school.  Some are small, but not insignificant, others are quite big.

1. School gate chats and getting to know other parents.  Our daughter’s school is 26 miles from home.  She, like most of the other children who attend the school, is driven in by bus.  That obviously takes a great strain off parents but it also means you miss out on the informal chats and networks that often develop amongst parents. Our school has a good Parents’ Association, but again the distance can make it hard for people to attend meetings.

2. Usually you have no choice about which school your child attends.  Now I know that many parents around the country whose children attend mainstream school have very few  – if any – options.  But when your child has to attend special school, it feels like the idea of even HAVING options goes completely out of the window.  Parents of children in mainstream schools may wish their child to attend a certain school for religious reasons, or they want education through the medium of Irish, or they want a school in a particular geographical area, or one with smaller classes.  Whichever of these reasons is paramount to them (and of course many parents are perfectly happy with their local national school, which is great), at least they have options they can investigate.  That option is not open to parents whose children have to attend special school.  As I said our county has two special schools, but only one caters for children with our girlie’s level of disability.  So that was our only ‘option’.

3. Your child may well have a lot of travelling to get to and from school.  In our case, as I said above, the school is 26 miles from home.  That means she leaves home at 8am and is back around 3.30pm.  That is quite a long day for a small child, and she was only just over 6 when she started there.

4. The thing of not getting to mix regularly with other parents means that you don’t get to know the parents of your child’s classmates.  So organising to meet up outside of school – which can be a great social thing for both parents and children – is often non existent.  And inviting your child’s classmates to a birthday party?  How, when you don’t even know their parents?

5. It takes your child away from their home community.  That means that other children of her age in our town don’t know her and she doesn’t know them.  That means no playdates (much harder with a child with special needs, I know), no involvement in our local school which is a big part of any community.

Please don’t misunderstand me, we are very happy with our school, our daughter is very settled there and has made fantastic progress since she started.  I hope this post doesn’t come across as a ‘poor me’ post, its not meant to.  Its just that there is so much that we all expect to experience as part of parenthood, that for those of us whose children attend special school, we can never have.

 

Parenting · Special Needs

Fool Me Once – replace the Lunacy Act

There has been some outrage and considerable upset and distress in recent months here in Ireland with the broadcast of a documentary showing appalling treatment of residents with intellectual disabilities in Aras Attracta and most recently the findings of a HIQA inspection in St. Peter’s Care Home in Castlepollard, Co. Westmeath. I am not going into the issues raised in these reports here, to be honest I don’t even know where to begin with how they made me feel and what it all might mean for my daughter in the future.

No, today I just want you to THINK about something, and then DO something. In the media reports of the above cases the people who live in these facilities were largely referred to as ‘residents’. On occasion some commentators referred to them as patients which is not ideal language. You might be thinking, well residents, yes they do live in these places after all. They are all people with intellectual disabilities. You might wonder is there a generic term, a single word, to describe these people. Well, no there isn’t and there shouldn’t be.

Except when it comes to a piece of legislation that dates from 1871 and is still on our statute books. The Lunacy Regulation (Ireland) Act of 1871 was enacted in the Victorian era to protect and manage the state of lunatics. It defines a lunatic as a person found to be “idiot, lunatic, or of unsound mind, and incapable of managing himself or his affairs” today the courts service lists the reasons for peoples’ admittance into Wardships as ‘elderly’, ‘intellectual disability’, ‘psychiatric illness’,or ‘acquired brain injury’.” You can read all about this in more detail here. Inclusion Ireland, along with a number of other organisations, is campaigning to have the Lunacy Act replaced with the Assisted Decision Making Bill.

If you watched the documentary about Aras Attracta or read about St. Peter’s in Castlepollard, ask yourself this: should those people be described as lunatics and governed in part by a piece of legislation which does not seek to involve them in decision making at all? Or should they be assisted in making decisions about their lives, something that the rest of us take for granted we can do? I know what I think and what I want to see happen.

Yesterday marked the 8th anniversary of Ireland signing the UN Convention on the Rights of Persons with Disabilities (CRPD). Ireland has yet to ratify the CRPD. One of the things stopping Ireland from ratifying that convention is the Lunacy Act. If you agree that the Lunacy Act should be replaced by the Assisted Decision Making Bill (a Bill which, by the way, was introduced by the current Government in 2013 and remains at committee stage), then please, now that you have THOUGHT, DO something and sign the petition http://www.ipetitions.com/petition/replace-the-lunacy-act

And then urge others to sign. Thank you.

Parenting · Special Needs

And I would drive 500 miles…… starting school part 3

With all due apologies to the Proclaimers, this song has been the soundtrack to my life this last 6 weeks. I wrote before about our darling girl starting big school last month and we are delighted that she has settled in really well. She likes her new teacher very much and is very happy in her wee class of seven. Now, when the subject of school started to loom closer in our lives we realised very quickly that we had no choice in where our daughter would attend school. Her level of intellectual disability is such that she is not able to attend our local mainstream national school. I firmly believe that all children should be able to attend mainstream school as I feel it is the only way we will achieve full acceptance of people with disabilities in society. And before anyone asks, no I don’t feel we are there yet. But that is a long long way away, and so we had to accept that mainstream education is not an option for our little girl.

That was fine, we had heard very good reports of the school and on going to visit it we were very happy with what we saw, nice facilities, very pleasant and committed staff and generally a good feeling. Unfortunately the school is 26 miles away from our home – a long way for a wee 6 year old to have to travel. But it is the only school in Co. Meath that can meet her needs and so we filled in the relevant forms and in early June we were duly notified that she had secured a place.

So with some considerable excitement we started to prepare for her first day at big school, new uniform (and see here for more on THAT subject), we began the process of talking to her about starting big school and we filled in an application for school transport. I said above that the school is 26 miles from our home door-to-door and our daughter is a wheelchair user and ideally should travel to school in her chair. So I assumed it was just a formality, filled in the form and waited.

And waited. I won’t bore you with all the boring details but suffice it to say that by 2nd September our daughter still did not have a bus place. And she was starting school on 3rd September. Imagine then my panic and feelings of utter dread when I was informed that day that it might take “a couple of weeks” for her place to be sorted out. I did not relish the thought of driving 52 miles each day. I most certainly did NOT relish the thought of spending all day 5 days a week in Navan (sorry I’ve never taken to Navan!) as there was no way I could afford the petrol to travel home and back again between school times. But I told myself it was only for a couple of weeks, I’d just have to suck it up.

Well the couple of weeks dragged on. And on. And bloody on. And finally after 33 days and 1716 miles (way more than the 500 of the song and even than the 500 more), our daughter travelled to school on the bus for the first time today. And by goddess was I relieved!! But I’m bloody annoyed that it now transpires the reason she didn’t have a bus place on 3rd Sept was because some pen pusher somewhere neglected to tell the relevant people that she needed a wheelchair place on the bus. This was despite me writing in BIG BOLD LETTERS on the original application form that she was a wheelchair user and needed a wheelchair place.

So now she goes off quite merrily on the bus and back home again in the afternoon and I have to apply for partial reimbursement of my petrol costs. I wonder how long THAT will take to come through????

Parenting · Special Needs

Crests and costs – starting big school part 1

Next week our gutsy feisty little girl will be starting big school. A momentous occasion for any family. I have lots of emotions and thoughts going round in my head about this event in our lives, but for today’s post I’m just going to focus on one element of starting school – or indeed going back to school – that hadn’t really occurred to me. The cost of it all. Now anyone reading this who already has one or more children in the Irish education system will be well aware of the cost involved. But for anyone whose children aren’t at school yet or who doesn’t have children, hold on to your seats!

Ok, cards on the table. F will be starting in a special school next week, it is the only place suitable for her needs. (I am an advocate of mainstreaming but my daughter can’t wait 20 or 30 years until that is possible for her – will be coming back to this in another post.) She cannot read or write yet and is not learning at that stage so we don’t have books to buy. I know from other parents that the cost of books can be huge, not all schools operate book rental schemes and when they do it doesn’t cover all books. And then there is the workbook issue – other parents more qualified than me are writing about this as part of the Irish Parenting Bloggers blog march this week – but suffice it to say that parents often cannot hand books down the family because they use workbooks now which the child writes in and then can never be used again. This raises the question with me why are workbooks needed? What ever happened to a text book and an exercise book (as I called them growing up in England) or copy book (as they are called here in Ireland)?

Anyway I digress, back to our situation. So no book costs, ok one big outlay we don’t have – yet. We got a letter a while back stating that the cost of art and stationery supplies was €35 per child per term. At three terms a year that’s €105. Not a vast sum of money I grant you but enough when you have to find it. However, I have no problem with paying it – I would prefer that schools were given enough money in their budgets to meet all these costs but that’s not the case at the moment.

So we have a running total of €105. F’s school offers optional dance/movement sessions for the children at €40 per term. We have opted for this as F loves music so much and we want to expose her to as many activities as possible. So there’s €120 more. Total cost towards our daughter’s education for her first year in big school €225. Not bad at all when I hear other parents having figures of €1000!

But then came the details of the uniform. As a teenager I railed against the idea of a uniform – it suppresses individuality, its all about conformity etc etc etc. As a mum I love the idea of a uniform! F can be hard on clothes and my laundry load is always at least 60% her clothes. The school informed me which shop the uniform had to be bought in, so off I went last week to purchase my daughter’s first school uniform. Oh I was so disappointed in it! I will be coming back to the uniform again in another post, but in the context of school costs, my main annoyance is the cost and the crest. Her uniform consists of a sweatshirt which has the school crest embroidered on it, sweatpants and a polo shirt. Total cost €57 (I bought two polo shirts cos she’ll never get a week out of one.) €45 for a bloody jogging outfit and €6 each for 2 canary yellow polo shirts!!!! The quality isn’t great and certainly not worth that money in my opinion. But that’s the uniform and that’s what she has to have. I swallowed my annoyance and paid over the money. So when a friend told me that Penneys have navy sweatpants for €5 I nearly went ballistic. Y’see you can’t just buy the sweatshirt of F’s uniform, its all or nothing. And why? Because of the damn embroidered crest. This same friend has removable crests that she sews onto her son’s uniform – he attends a special school in a different county.

Why the need for an embroidered crest on a school sweatshirt? Why can’t the school get them made up and sell them to parents to sew on to the generic school clothes available in department stores everywhere? €45 for the sweatshirt and sweatpants. And remember too that families who have a child attending special school do not usually have another child attending the same school. So they can’t even pass the uniform down to the next one. They can’t be tumble dried and as I said F is hard on clothes (she crawls and bumshuffles a lot) so I’m going to be washing these two or three times a week and then frantically trying to dry them ready for the next day. More fuel costs. As a single-income household I cannot afford to fork out €90 for two sets of uniforms at the start of the year. (I’m trying not to think about the fact that F is growing fast and may well need another uniform before the year is out)

My parenting journey is different from most people’s because of F’s disability. And yes we aren’t looking at anything like the back-to-school costs that some parents are. But its still an added pressure. I would like to hear any school – special or otherwise – justify the need for the specific uniform, particularly when it is extremely unlikely it can be handed down a family. And families of children with special needs generally don’t have money to spare…..

Parenting · Special Needs

Anguish, Minister Quinn?

Its a lovely sunny day here in Oldcastle. Its warm and there are fluffy white clouds in the sky, the birdies are singing and all seems at peace. Except its not. In an hour’s time I will be collecting my daughter from her school bus 13 miles away. Normally we’d then head straight back home for the evening. But today we will be driving to Mullingar to assemble for a protest at 5pm. Its not my idea of fun on what promises to be a lovely summer’s evening, marching in a protest – another protest – with my daughter in her wheelchair, but once again we have to. This is the third summer in a row we’ve gone marching and protesting. And I wouldn’t mind that too much (have always fancied myself as a bit of a rebel) but we are marching over the same issue – the right of children with special educational needs to receive full support in their educational career.

Yesterday Ruairi Quinn, Minister for Education, announced he had reversed a decision to cut resource teaching hours to children with special educational needs by 10%. When making that announcement, Minister Quinn said he regretted if the parents of these children had gone through anguish as a result of the announcement of the cuts which had been made last week.

A few people have said to me yesterday and today that we should be delighted at the reversal of these cuts. And don’t get me wrong, I am. But there is so much more that we are still fighting for – or against. Here is just a quick list:

* There is still a cap on Special Needs Assistants despite a bigger demand.

* The 15% reduction in resource hours in school has not been reversed.

* HSE recruitment embargo means waiting lists are getting longer and several children are not accessing the clinical supports they need.

* Children with Down Syndrome are not automatically getting resource hours in school.

* Siblings with autism have to share a tutor and now receive half the tuition they were originally granted during the month of July.

* Children with Down Syndrome, Fragile X and other neurodevelopmental disorders are not entitled to July provision.

Add to that battles that I am hearing of on a daily basis from other parents such as the HSE not sanctioning wheelchairs for growing children due to lack of money, problems with school transport to the only schools suitable to meet a child’s needs, horrendous waiting lists for occupational therapy and speech & language therapy owing to the HSE embargo on recruitment and to hear a senior Government minister regret any ‘anguish’ caused by cruel and savage cuts and you might understand why it makes me fume.

Anguish, Minister Quinn? You don’t know the bloody half of it.

Parenting · Special Needs

Sometimes I despair for my daughter’s future

For a change I’m not giving out here about the endless fighting for grants to make houses suitable for people with disabilities, or fighting to get equipment to help our children stand or walk or whatever their current need might be. There is a bloody long list of things that we and other parents are fighting for but that is not actually why I sometimes despair for my little girl in the future.

No, the despair is down to attitudes.  The National Disability Authority regularly carries out studies into attitudes towards disability in Ireland.  The most recent was carried out in 2011.  2011 study PDF.  Some of it makes for depressing reading.  To quote Peter McKevitt, chair of the NDA, in the foreword to the report: “..the findings of our study in 2011 unfortunately show a hardening of attitudes across all types of impairments, and of particular concern are the less positive attitudes towards children with disabilities in mainstream education, which challenges the improvements that were achieved between 2001 and 2006.”

Parenting a child with special needs – of whatever type – is hard work.  And there will always be days when it feels harder than usual. But this few months it has felt (to me at least) as if we in the special needs community were fighting battles that we thought – hoped – had been settled years ago.  Back in February there was a hugely controversial article in the Irish Examiner by Tony Humphreys on autism.  Tony Humphreys’ article.  I know many parents who have children on the autistic spectrum and I know that they all found this piece to be hurtful in the extreme.  It outlines outdated attitudes and beliefs that will only serve to push understanding and acceptance of people with disabilities back years.

Then other little things keep cropping up – like being told “sure isn’t it easy for you with your parking permit” when I calmly explained to a woman that I needed that disabled parking space more than her.  I was shopping with DD and needed the space to unload her  and the wheelchair. The other woman had just blithely parked in the space because she was just “popping in to meet a friend” in the cafe.  She did move her car to a space just 3 spaces along…… but only after making the comment above.

Sometimes there are comments on internet fora whch reduce me to tears – like questioning whether or not children with Downs Syndrome should be allowed to attend mainstream school.  Obviously every case is different and for some children with Downs Syndrome a special school will be the better option.  But inclusion should be the aim.

Inclusion and understanding is the only way to go.  But when I read in the NDA study cited above that only 38% of people believed that children with intellectual disabilities should attend mainstream school, well my heart just breaks a little bit more.   As I have said here before,  when we found out our unborn baby had a rare condition our whole world just dissolved.  Once she was here and safely home with us things were easier and we were more able to think about the future.   One thing we were – and still are – determined about was that our daughter was not going to be seen as “that kid up the road who uses a wheelchair” but rather as “Fionnuala up the road”.  We never wanted her to be defined by her disability.  We hoped that society was far more inclusive and accepting of people with disabilties than the world we had grown up in.  Sadly I don’t know if that is the case.

Fionnuala is shortly to finish her mainstream pre-school where she has been going for 2 years.  She has had the support of a pre-school assistant (essentially an SNA) who has been wonderful with her.  The pre-school has done a huge amount for our little girl, she is now completely used to being with other children and is very content away from home.  All very important when trying to develop as much independence as possible.  The other children there are completely accepting  – yes they do ask why she can’t walk or talk very much but to them she is Fionnuala first and foremost.  And that fills me with such happiness.  I just wish I could be sure that she will always be met with that level of acceptance throughout her life.  But I am nowhere near sure of that – and that is why I despair sometimes for her future.

Parenting · Special Needs

Hype, Minister Rabbitte?

Pat Rabbitte is a Labour Party TD  in the Dáil.  He is also Minister for Communications, Energy and Natural Resources.  As a former leader of the Labour Party and someone who has been politically active for many years now, you would expect that he would be conscious of how closely every utterance he makes is monitored and assessed.

Imagine then my shock which rapidly turned to anger and disgust when, during an interview with Colette Fitzpatrick for the ‘Midweek’ programme for TV3, Minister Rabbitte referred to the protests against cuts in SNA (special needs assistants) positions and in resource hours and the media coverage of these protests and campaigns as ‘hype’.  The word hype is defined by the Cambridge dictionary as  a noun “when something is advertised and discussed in newspapers, on television, etc. all the time in order to attract everyone’s interest.”  See the definition here. Well, ok, maybe he has a point – we are desperately trying to get more tv and newspaper coverage of this issue in order to make more people aware of the reality that children in Ireland with special needs are having more and more barriers placed in their way in their attempt to receive an education.

But then thinking about it some more, the word ‘hype’ is generally used in a derogatory fashion – “Don’t believe the hype” for example.  I cannot think of an instance where I have seen or indeed used the word hype in a positive or complimentary way.  In fact, its often used to refer to something that has little real substance.  So if you follow my train of thought, that means that Pat Rabbitte, a political activist of many years standing and a TD for 22 years, thinks that the campaign of parents, teachers, SNAs and others to ensure that children with special needs get the education they are entitled to in this State, is being overblown.

Tell that to the parents of children attending St. Raphael’s Special School in Celbridge, Co. Kildare where some children are only able to attend for an hour a day as there is not enough SNAs to allow them attend full-time.  Tell that to the parents of a boy with spina bifida who has had no SNA at all some days since he started back at mainstream school two weeks ago and who now has reduced hours instead of the full-time SNA he used to have.

You can see the TV3 interview here and make up your own minds.  Maybe I’m overreacting, but the more I hear about how the next budget in December is going to be another hard one and that there are going to have to be more cuts, the less faith I have that my daughter will get the opportunity to receive the education she deserves when she starts school in a year or two’s time.  So its kind of a sensitive area for me, even more so when I read about Dermot McCarthy, the former Secretary General to the Government, who is to receive a pay-off and pension totalling €713,000.  And the Government are not going to do a damn thing about it.  Story here.

And then people wonder why we are getting angry???? We need to get angrier, and louder, and we need the support of more and more people in this country.

Every child has the right to an education.

Parenting · Special Needs

Whose bright idea was this??

I read in this morning’s Irish Times that the Dept of Education is proposing to increase class sizes:  School class sizes set to increase   So they are planning to have more children in each class, both at primary and second level.  The population of the Republic of Ireland has increased by 341, 421 in the last five years (source: CSO ) and as Sean Flynn points out in his opinion piece in today’s paper, Ireland’s primary school class sizes are already among the most overcrowded in the EU:   Quinn faces reality check in education reform drive. We have all seen primary schools with a number of temporary classrooms (or portacabins if you want to be blunt) in use in order to accommodate increasing numbers of pupils. So our population is on the increase and our school buildings already cannot cope physically,  yet our Dept. of Education is going to create larger classes.

Hmmm. Can’t see how that is going to work.  It is widely accepted that smaller class sizes leads to better quality of education for children.  Certainly a teacher can give more attention to each child if s/he is teaching a class of 20 rather than one of 25, or 30.  And that is before you consider the issue of children with special educational needs. There have already been protests and campaiging (some of which you can read about in previous posts on this very blog) on the issue of cuts to SNA positions and in resource hours.  Children with special needs – of whatever kind they may be – have a right to receive an education.  Many children with special needs are now educated in mainstream schools, and that is a good thing.  But only if they get the extra help they need.    So how will that happen if there are going to be more children in the class, and less help for those children.  The answer is very simple: it won’t happen.  Children with special needs will not receive the extra help they need.  How can they when their SNA is gone and the teacher has more children in the class?

Ireland, as you may have heard, is not in the best of health economically.  All government departments are being forced to make savings and Ruairi Quinn, the Minister for Education, has said that he will deliver on the required cuts.  I don’t envy him his task.  As he rightly pointed out at last week’s MacGill summer school, education’s share of national funds  has actually contracted in recent years.  Fifteen years ago 19% of the exchequer’s gross expenditure went on education.  It currently accounts for 16%.  Yet our population is increasing.  I wholeheartedly back Minister Quinn in his call for a national debate on the importance of and priority we give to education but I don’t believe enforcing cuts and changes that are only going to negatively impact on the education of a generation of Ireland’s children is the first step.

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?