Dear Minister for Education

I am writing this email to you, the Minister of Education, to ask for your help.

When you search for “Minister of Education, Ireland” on Google the following description is listed beneath your name:

The Minister engages in a wide range of activities relating to education in the Republic of Ireland, including policy planning, quality assurance and the provision of a broad range of services.

The department officially aims to:

– Promote equity and inclusion
– Promote lifelong learning
– Plan for education that is relevant to personal, social, cultural and economic needs

I am a mother to six children, FIVE of whom are waiting on services and assessments in the Cork area.
My only son, Bodhi (4) was diagnosed with autism in 2016. I emailed, wrote, rang, cried and begged local politicians and departments at the time for their help, one I still haven’t even had a reply from to this day. In the end I had to enlist the services of a human rights and civil law solicitor, Gareth Noble in order to get my child access to a school place as the current bullshit policy states that some schools are allowed to deny a child a place dependent on the “type” of assessment that they have for their child.

Parents backs are to the walls, they are being forced to pay out anything in excess of €1400 for a private multi disciplinary assessment as the €500 single assessments aren’t good enough, or be made wait up to three years for an assessment. In the meantime our children are left in limbo, they are being forced into a school setting which is not suitable to their needs, with no diagnosis, they have no choice but to attend mainstream and regress.

This is your problem as you are putting children into a setting where their educational rights are not being adhered to. The teachers in primary and secondary school settings are not equipped to deal with or diagnose autism, they assume the child is difficult, this then leads to isolation and no learning being done or made, an even bigger divide in socialisation and an increase in self harming or flat out refusal to go to school as no one is actually teaching them.

The pressure that this type of situation puts on families, siblings and marriages is massive and is all totally unavoidable. We are being robbed of any chance to simply enjoy our lives, we are living on the edge as parents, constantly worrying about the next stage, where will he go to school, how will we get the money together, will they grow up to live independently, we are trying to come up with the costs of assessments and therapies for our children as there are no other alternatives. We have to be their voice, our whole life becomes being their advocate, dealing with paperwork, wearing the hat of many with no respite or pay. We live in isolation and depression as we face each day with little to no help or any inkling of it ever occurring. We don’t get holidays, we cant clock out, we cant afford to get counselling, the kids have to come first, we are forced to play the hand we are dealt with and we get on with it.

If you have 100 children in front of you with autism, you have 100 children in front of you with autism. We aren’t a one size fits all, each child needs an assessment to figure out what their specific and individual needs are. They then need to attend a school suited to those needs with professionals who are trained in the right areas to provide some 1:1 work and in a setting where its functional and practical.

Why are the SENOs authorised to offer us places in different counties and land us with the alternative of sending our child in transport sometimes 1.5hrs each way from the age of four or refuse it and find a home tutor to teach our child at home? We all know it is because their job description is simply to deal with lists and not people, to reduce the numbers so it gives the impression that things are being done.

If this was the choice offered to parents of ALL children it would be an all out scandal. Would you send your 4 year old in a taxi to school at 7.30 in the morning, keep in mind this 4 year old can communicate, is verbal and can tell you if they are scared, sick, if someone hurt them, someone was mean to them, if they were looking for you, if they missed you or if they simply didn’t like the place. Our children cant communicate any of this to us but yet it is deemed acceptable that they put up and shut up and be grateful in the process.

Who wrote this script and decided that one child takes preference over another all of a sudden?

We aren’t asking for handouts, allowances or money. We are simply asking for access to suitable placements and an education. There is nothing being done about the disgraceful length of time in which children are being made to wait to be assessed publicly, which has a knock on effect and they are wrote off before they are even given a chance to begin with. It seems to me, as a parent of children with autism, that you are damned if you do fork out the money and damned if you don’t. There seems to be one rule for one and one for another. We seem to have gone back in time to an era where class and hierarchy exist yet again. In 2018 children are being discriminated against simply because they have special needs.

There is NO promotion for inclusion.

Children with autism have NO school places.
Schools are voting within their walls as to whether they would like to open a unit or not.
Teachers are drawing straws as to who would get to teach in a unit.
Do you know how upsetting it is and how broken hearted you as a parent are when you hear things like this? That people you are meant to trust in an education setting are drawing straws as they don’t want to teach your child? The reality of it is though these teachers aren’t trained to teach in units and don’t want to work there. Why the hell have we units opened with no qualified staff manning them or have no units at all in place in other areas and staff out there looking for work?

These are facts Minister, sent in to both my blog “Out in the sticks with Six” and Nicole’s blog “My Boy Blue”, by teachers working in the schools, this is not something I say to sensationalise the matter. I am sure there are hundreds of more stories other parents will also email in because I asked them to take a stand with us.

Since when are we now picking and choosing what type of students that teachers would like to teach? Are we going to role out a bias on colour and gender next?

There is NO promotion for lifelong learning.

In any school you happen to visit there are these inspiring words on walls, encouraging the students to shine and stand out, yet society is telling our children that they need to blend in, conform and get on with it and be thankful that they even have a place.

Christ almighty, you drill it into us that the importance of “early intervention” is crucial to set our children up for the best, for their future in life and in education, yet there is no early intervention. So how the hell can you stand behind the idea that you promote lifelong learning when you cant even acknowledge the children ages 3 to 6years who need early learning units. You can be damn sure if there were no places in Montessori’s, preschools and playschools for all children, the country would be in uproar. It seems to me that the ethos of both the Minister’s for Health and Education is simply “not my child, not my problem”

Well, we are about to make it your problem, enough is enough. YOU have a duty of care and responsibility in your position in this Country to do something about this. Apparently there is a diagnosis of 1 in 65 in Ireland, yet there is no government or health executive service body counting the assessments, no records are being taken, Christ children aren’t even being assessed right now so how do they have any idea at all of numbers? I attended a conference recently where a CAMHS representative stated that professionals now believe that the numbers are more like 1 in 29. Going by these type of numbers you are about to have an epidemic on your hands of being the country that has no school places for any children with autism as this is not going to just go away, which seems to me would fall under the plan for education which is relevant to personal, social, cultural and economical needs.

The system needs total reconfiguration and you have the authority to put some things in place.

We need to fill the vacant positions which are holding up all the delays, instead of promising funding and SNA positions, you need to deliver it. There doesn’t seem to be any shortage of schools being built in my vicinity yet where are the units? We need both units and schools which are accessible and exclusive to children with autism.

My son Bodhi is lucky enough to attend Sonas Junior School for Autism in Carrigaline, a place which we had to fight tooth and nail for but this school caters to 42 students ages 3 to 6. I spoke with the principal Bairbre recently and she said she has the numbers to open another school in the morning, in fact there are plans in place right now and developers are about to start a new build. She is currently operating between two buildings in opposite ends of the town just to cater to the students they currently have. Yet this new build will also only accommodate 42 students and the old buildings will cease to operate as Sonas.

Why cant funding be made a priority and it be mandatory that schools have to open ASD units. You announced recently that there would be 20,000 SNA placements, where are they? What hoops, bells and whistles do schools have to jump through in order to access these imaginary positions?

Why are there not more places like SHINE centre for Autism also based in Carrigaline who have to operate entirely by fundraising and home tutors. Not only do they teach children with autism, they are probably one of the few FREE advocacy services in Ireland for families living with autism, providing sibling support, conferences and yet they also manage to create apps and a website to educate people. Yet again this was all set up and ran by parents of children with special needs, the backbone of when you need anything done it seems.

Why can’t the Minister of Education not recognise the incredible work that they do and put the money and funding behind it to open more units like this nationwide to tackle the number of children waiting for places and in turn deal with the huge volume of children in need of early intervention?

Why are we programmed to believe that the HSE and Department of Education are the only professionals out there whose diagnosis and reports are the only ones with any credibility? Why cant psychologists, speech and language therapists, occupational therapists etc be hired to look after a specific catchment area of schools and funding be put into that, therefore eliminating the long waiting lists and also dealing with any problems as they arise within the schools head on?

Where are the units for when our children leave primary, why do we have to fight all over again for a place in secondary school, access to a unit and or an SNA? Why isn’t an up to date assessment put in place automatically for those leaving primary and entering secondary to determine what their needs are now they are entering into a completely different learning environment? Its not rocket science, it is quite clear that a dose of cop on can go a very long way, if the budget was distributed evenly and fairly and not doled out on absolute ridiculous unnecessary events like a visit from the Pope or Charles and Camilla. What about the children who actually live here and will also be adults in society one day, can we not focus on them being as important?

Isn’t life incredibly difficult enough trying to communicate and survive day to day living with autism without our children being made feel like they are a burden?

When my son reaches the age of six I have absolutely no idea what will happen, where he will go and what we will do and not for the lack of trying. I cant just sit back and think I will cross that bridge when I come to it, I need to know what has to be done for him. I have seen first hand the phenomenal difference early intervention can make on a child, my son is it. He was non verbal and being given the chance at working with amazing professionals, therapists and teachers is now thriving as he is in the educational setting that is suited to his needs right now. I am frightened for his future if I am being honest, all of this hard work can be for nothing if he has no unit place to move onto and he could regress and stop speaking again. I have been proactive in trying to secure a place even on waiting lists in units since he was 2 years of age. I rang local schools myself to see if they would be open to the idea of opening a unit, one school said that they would but the issue was funding as they were still struggling to house classes in the school building as they were still in prefabs yet ironically at the time of our conversation there were students with autism in every class besides one. The other school I rang took what I (and I imagine others) said on board and to be fair to him he opened a unit up just this year.

Do you not realise that ONE unit in a school is only accessible to SIX students, if those students are there for eight years then there are no available places for anyone. If one child happens to leave then that only opens up ONE place in a catchment area for thousands. How are we now living in a time when you have better odds at winning the lottery than attending a school locally to you with a unit?

I have a 2 year old daughter with whom I face the same battle all over again with, I am weary, I am tired and this is all due to the uncertainty of their education placement. I have two children waiting on either the HSE or the Department of Education to pull their finger out and help them, you are pushed from pillar to post and one list to another, in an effort to exhaust you so you give up. Our children with autism do grow up to be teenagers and adults with autism. Is it any wonder that we have the highest rates of depression in teens in the country when there are NO supports, services or help in place for them, the highest suicide rates in the world when we are crying out for help for our families and suffering massively with mental health issues and no one will listen to us.

As a Minister I imagine you travel to different countries and are familiar with being amongst a group of people whose first language is not English and you struggle to comprehend what is being said, you can nod and smile and hazard a guess, you may even be lucky enough to have a translator and at the end of the day you can return to the comforts of your office or home and forget all about it.

You see, this is what life is like EVERY SINGLE DAY for our children, they describe autism similar to landing in a foreign country where you cant communicate, no one understands you, everyone is looking at you, you have no translator to help and have nowhere to turn, except for our children, there is no returning home and clocking out and forgetting all about it.

This is not a foreign country Minister, this is Ireland, 2018.

You are in the position to make a difference for the lives of all of us. You can easily sway and discuss the change in policy planning and assure that there are a provision of services available rolled out.

Be the Minister who everyone talks about, the one who actually gave a shit and did something as opposed to the one who hid behind the door of the Dail like most of the rest, biding out his time until the fat pension kicks in.

Regards

Lenore Good

https://outinthestickswithsix.wordpress.com/
https://www.facebook.com/outinthestickswithsix
https://www.instagram.com/outinthestickswithsix/

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