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????

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.