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.
I have an amazing group of friends. Well, I have lots of fabulous friends but there is one group in particular who are pretty damn special to me. These eight women have laughed with me, cried with me, marched with me and generally helped keep me somewhat sane for the last few years. These women are all mums to children with special needs, as am I. That’s how we all know each other. Our children have a wide range of needs and conditions and our family circumstances are all very different. We live in various counties in Ireland and only get to meet up in person once or twice a year. Thank goodness for Facebook and other social media!!!
At the moment some of us are anxiously waiting for decisions to be made that will hugely impact on our children and families. Decisions like will a child of 10 continue to have an SNA in his mainstream school? Will a child with complex medical needs owing to her condition have all the equipment she needs in place to start special school? Will a child of 5 be allocated a suitable transport place to enable her to attend the only unit in her county that meets her current needs? Around this time last year, other mums in this close-knit group were equally anxiously waiting to hear about SNA allocation, placement in appropriate units etc. I wonder what we will all be waiting to hear about next year.
And we are only nine families. The tip of the proverbial iceberg. We chat online most nights . We discuss the attractiveness or otherwise of certain male celebrities. We talk about books we’ve read or are planning to read – not just 50 Shades of Grey! We laugh about the funny things that happen in everyone’s lives. And we share the hard days when some of us might be worrying about our children. And we rant and complain about the lack of services for our children. Or about the fighting we have to do to access certain things which should be our children’s by right – like education, like speech and language therapy. But increasingly a note of something approaching despair is creeping in. Despair at having to keep fighting, despair that our State seems to be endlessly cutting back at services (and if I hear the phrase “budgetary constraints” again!!!) I said to them all earlier tonight that I truly feel this State (Ireland for anyone who doesn’t know where I am) does not consider our children – or anyone with a disability – to be an equal citizen with the same rights and entitlements as anyone else. None of them disagreed with me. (They wouldn’t dare ;))
But surely to goodness there is sometihng very wrong in a country when nine women of different backgrounds who are linked primarily by their children’s conditions all feel like they and their children are getting a raw deal. Like I said earlier, we are only nine families. But there are thousands more like us. Do they feel the same? In my bleaker moments I despair over the attitudes in wider society towards those with disabilities – do they also see my child and all the others as less than equal?
And in its those bleak moments that I am so thankful and grateful for the friendship of those eight women. Without their love and support and virtual safety net we have created I fear I would surely have fallen by now. So to A, A, C, G, K, L, N and T – thank you all for everything xxxxxx