Wednesday, September 8, 2010

Big school

7:00 am The alarm chimes away upstairs to say its time to get the rest of the family up. Sleepy raises his arm and splats on top of the alarm to silence it. I know he will have opened one eye a tiny bit to check the camera monitor's in the bedroom next door. As he lies dozing I know he is listening to the breathing on the monitors to ensure all is well.
When I hear a few rustles in No 1 son's room, I leave the lunch preparations and go up stairs.
Before I go in to Jake. I stick my head into the twins room No's 2& 3. 'Ok, Zig and Zag up you get! Put on your tracksuits at the end of the bed'. They make inaudible noises and go further under the covers.
When I open the door I always smile when I see his eyes open,  alert, smiling. The fear of the morning when this won't happen still worries me or the way you feel the numerous times when you go in to him in the middle of a seizure. Then his eyes are open glazed, body rigid. Normally then he has lost control. This illness doesn't allow him any dignity.
He smiles up at me as I reach down to kiss him. Gurgles as he tries to say what I know is 'Love you'. This makes it all worth while. I say back ' I love you too sweetheart' as I start to use the baby wipes to clean his face.
Next I shout pleasantly at Sleepy to get up to look after Zig and Zag.
Pulling back the sheets I remove his bedclothes, change his nappy and wash him down. Thankfully, he had a bath last night and I don't have to lift him to much. Now that he is 13 he is getting so heavy. My sore back never seems to go these days. I push the button on the bed and the top part raises up so I am able to start to dress Jake. Taking off his pyjamas I wipe him down and try, as I do every time , not to look at his scars. Medical people are amazing. The body is even more amazing how it repairs it self after such invasive trauma never ceases to amaze me.
Next door the giggles come as I hear Sleepy tickling Zag as he dresses him. Luckily Zig is mobile and able to do all this himself . Two seven year old's are a handful. The motors whirr as I manoeuvre Jake's bed so that I am able to slide, push & lift him into his chair. He grins as he tries to help me to help him. God he tries so hard.
As we use the stair lift to get down stair's I can hear the radio being switched on in the kitchen and bowl's for cereal coming out . The twins are at the table and say their warm good morning's as they hug me in between little digs at each other. Sleepy give me a kiss and a cup of coffee. Mmmm coffee.... oh it was a nice kiss but the coffee, never mind..... finish making lunch's.
7:45 am   More news of another €26 billion into this bank. The government minster says 'we have to protect the depositors in the banks....' Time to start to hurry them up. 'Ok guys let's get moving'. 'Did you give them their med's? I know but I have to ask...'
As I wheel Jake to the van , Sleepy is fastening the seat belt's on Zig in the front seat. He is great with his brother's but he doesn't like sitting in the back with the 'chairs'. Fair enough. He is entitled to some quality of independence. God know's he may be all they have to fall back on when we go.
I click the two chair's into position, shut the doors and off we go.
8:25 am and we are at Zig and Zag's school. 'Hiya Mary' as Zag's SNA walks to the window. She beams in to Jake. ' How's my favourite little man?' Jake laughs as she starts to tell him how smart he looks and that all the girl's will be mad about him. Mary looked after Jake for two years and did so much beyond her remit. I personally credit her for his being able to have developed his use of the fantastic App on his iPhone. Now he can tell us all what he want's . For a non verbal child he can now communicate. So empowering.
I help Zig down from his perch as Mary wheels Zag out. 'See you later pet's have great day' Before I go I give Mary her week's supply of medication for Zag.
8.35 am and we are on our way again. It is only a twenty minute drive. We pull into the school and I can hear Jake muttering. I open the back to take him out and he is typing with his hand furiously on his iPhone. I lean over and see what he has said; 'worried' 'cry' 'home'. I choke back as I say ' No it will be fine pet. Don't worry. Yesterday, was just the first day in that school. It will be different now Daddy & I spoke to them about it.' 'Resources have been cut but we will be able to let him share some SNA hours to-day' they said.
His new principal comes to the door and smile's 'Hello Jack, how are you to-day?'
I just grit my teeth, ' Jake, my son's name is Jake'
9:00 am She apologises and as I drive down the road I cry, as I remember my son telling me on his iPhone that they had strapped him in a chair all day at his first day in big school.  I wonder then for his future. I wonder what else will be cutback on.

Wednesday, August 25, 2010

Special Needs and Ghost Estates

A few months ago, I asked a question of five politicians: 'In light of acquired knowledge and experience, was the time now right to consider an evolved role for an SNA ( Special Needs Assistant) in the classroom?
 An easy question you would think. But three of the five straight away came back 'What about the Unions?'
One of the others was a Minister, so he held his tongue.
The SNA is supposed to be in the classroom, school to assist the Special Needs children with CARE needs only. This is an important point. A lot of parents feel that 'getting a full-time SNA' will be the answer to their prayer's. This magical person will be with their child at all times in the school to cater for their every whim and need. Much like a parent does. To help educate their child to develop up to and beyond their maximum potential. Unfortunately, in general this is a myth. Parents have been fed this expectation by the schools, the teachers, the principals and dare I say it the unions.
Reality is, that despite the majority of SNA's being people who are committed to their job, they are not qualified to teach. Just like teachers, they do not have to do continuous  professional development. They are used in some cases as the school lackey. To do the photo copying, to be the classroom assistant, I have even heard of one whose job it was, to get the headmasters wife's dry cleaning. I kid you not. This was recounted to me by a Government minister.

A full time SNA is not going to be with your child full time, if you are allocated one. After all the system now is that when granted one, the allocation of those SNA hours is left up to the school principal. Since most principal's are former teacher's, who have been promoted to be the CEO of the School. An allocator of human resources and finance's that they were not trained for in college. It is up to them how many hours your child will get. The SENO (Special Education Needs Officer) has the power to grant these hours to the school. They have no disability training either like the principal's. Nor can a parent appeal a SENO's decision unless you do it through the school. What would a parent know about their child's care needs's anyway?

In the whole running of a school , SNA's , like resource teacher's are important parts of the business. They take the burden off the teacher's of the Special Needs children. The Department of Education and Skills (aka Finance) are pushing for a totally inclusive education system. This has a lot of merit. SN child should be educated alongside able bodied children but this poses a problem for the schools. Not all want this burden. It means the teachers have to do work out of their comfort zone. How many teachers have done any more than the basic study of disabilities in their training? How many have researched the condition of the Special Needs Child they are teaching? The schools need the Special Needs children for budgetary reasons. Manpower.
The SNA is the person the school depends on. They are the one who can look after the SN child and allow the teacher get on with doing their job. One which they are already over-burdened with. The allocation of SNA hours is key. But there is one little stumbling block. SNA's are in a different union. Teacher do not want SNA's to rise above their station and teach; well not teach officially. They would then be entitled to more money and the head teacher ; sorry, Principal has a tough job allocating the budget already. SNA's are not on  as secure and pensionable a position as the teachers and head teachers. They really are the worker bees.

Special Needs children have gained a better position in schools in Ireland since the Celtic Tiger. They are now accepted and no longer hidden away. The politicians laid the foundations of a secure structure with the EPSEN Act in 2004 but like so many ghost estates it was not completed and lies gathering dust. Are the Special Needs children going to be covered over with dust and let rot like those unfinished property developments. We know they are there but we are not going to do any more about them. We don't have the money any more. These children present a problem to the politicians. Their families are no longer willing to be quiet in the background. The media are willing to use them to show up Government inaction. Even the service providers who have ridden the gravy train and have shown that they are grossly incompetent with their managing taxpayers money. They also now use the Special Needs child as media fodder to get more money. Frontline services are always the first to be cut. Cue the poorly looking child with the disability for the TV cameras.

Now that the dust has settled on the massive boom and bust in the Irish economy it is time to evaluate what has happened to Irish society. What has changed? Winner's and losers. Who controls power in Ireland? Who is responsible for all of this? Now you cannot even get an answer to a TD's question in the Dail, 'due to a trade union dispute'. The tail wagging the dog's head

Friday, August 6, 2010

the Disability Industry in an accountable society

where to now for the Disability 'Industry' in Ireland ?

Just like the IT, construction  and banking industry things have to change. No longer can the 'industry' depend upon corporate sponsorship and government handouts with out some level of accountability. No longer can it have jobs for life, pension plans and protecting the protectors rather than the people it is supposed to protect and serve. It will now have to be accountable for the funds it receives. The annual reports will be trawled through like a rogue politicians. Sure, they will still be able to make a big fuss in the media about the loss of front-line services due to the cuts in Government allocation of funding. Put the sacrificial lambs of the weak and infirm out in front of the gullible media and public. Draw attention to the loss of respite , withdrawal of services, loss of SNA's. Get them onto the streets to protest. Oh, did we mention that we have some philanthropic donations that we can send your way..... Help protect the jobs. Keep the unions happy. Croke Park agreement is intact. Times are tough, we have to cut some funds but keep all the staff and the salary's. Your office close for summer holidays for a month? , even though you are an organisation offering assistance and advice to the disabled. Sure that's way shorter than a politicians holidays.

Well the young man in the wheel-chair who no longer gets to spend two nights a month in respite; giving his family two nights as a 'normal' family, doesn't know what Croke Park is. He won't ever play there. He probably won't ever get to see a game played there but the 'Industry' will have to keep fund-raising. Getting generous donations and supports. Keep the plight of the disabled in front of the media. Hopefully, the 'Industry' won't have to ever become 100% accountable and transparent.