The education system has let down my children again and again as they still wait for a primary school place’
There are moments that you will never forget. That moment when your child is born. Then there’s that moment when the midwife takes your baby to one side, counts their fingers and toes and performs the first cursory check of your child’s health.
Your sense of joy is matched with a pause in breath until you are presented back with your baby and are grateful to be told that all appears well.
Another moment you never forget is hearing your child’s first words. Whether it’s ”Dada” or ”Mama”, it doesn’t matter. Your child is trying to connect to you with language.
For our beautiful twin boys, Rory and Dylan, we had those magical moments and more. However, soon after these first words were spoken, things seemed to go silent again. It soon became clear that the boys were not developing as we would have expected. As you become increasingly aware of the fact that things are not as they should be, there is a sense of loss, fear and maybe even guilt. Was it your genetics or something within your control? But along with these feelings there is also a deepening sense of love that I think only a parent of a child with special needs can fully understand.
With the boys’ diagnosis of severe autism and intellectual disability there was a feeling of helplessness. What can you do? There are limitations to what can be done, of course, but with that deep love you have for your children you vow to do your best. You will get them the best support services. The best interventions as soon as possible. All the while flooding them with love.
There is no time to feel sorry for yourself. Life is full on in a home like ours. The boys have four wonderful sisters, who all step up like living angels.
Most people who walk into the house would be initially shocked by what seems to us to be quite normal. Dylan never sits still, Rory runs around whistling. Turn your back for 10 seconds and Dylan has stolen your keys and is trying to open the front door to make his escape. Double locks on doors and windows are the norm.
Once you’ve managed to prevent Dylan’s escape, you might return to the living room to find Rory standing on the mantelpiece about to smash a lamp on to the floor. You find humour within all this madness and you regularly console yourself that the main thing is that nobody was hurt. The boys are beautiful, funny and mischievous. As part of their condition, they rarely sleep before 2am. Most visitors I would imagine see the house as utter chaos beyond imagination. For us, we just get on with it.
We wouldn’t be able to get on with it, without the support of good people. The boys attended Jonix pre-school soon after diagnosis and the tutors there have done amazing work with them. They show a love for the children that runs deep and can only exist when you have a vocation rather than a job.
The people at St Michael’s House have also been a great source of support. Guiding us in how to get the most appropriate help and interventions for the boys.
When they were diagnosed we immediately put the boys on the waiting list for Saplings, a specialist school for autistic children.
In 2016 when it was time for the boys to leave pre-school, working with our Special Education Needs Officer (SENO) there were no suitable places identified in any school in Dublin. At that point they were 64 and 65 on the waiting list for Saplings. Although the boys had a constitutional right to a primary school education, we were forced to allow the boys to stay in the pre-school and the fantastic teachers there adapted their programme for the boys as best they could.
However, in 2017 the same situation happened again and we were once again forced to leave the boys in pre-school. Now in 2018 we were informed that the boys will likely have places in Saplings, but only from 2019. That’s six years after being placed on the waiting list. Surely it must be clear to someone within the Department of Education that we have a problem here? There is no way the parent of a typical developing child would tolerate any instruction to keep that child in a pre-school.
However for some reason people in the Department of Education think it’s quite acceptable for Rory and Dylan, aged almost eight, to attend a pre-school alongside three- and four-year-olds.
This coming school year the boys were offered places at Jonix’s school for primary aged children in Tyrrelstown. This is a school specifically for primary aged children who for the moment cannot find a suitable school and are of school age. The school is located within a State school’s property and is fully funded by the State under the Home Education grant scheme. We were informed, however, that this is not a recognised State school and as such doesn’t qualify for transport there and back. Travelling to and from the school for drop-off and collection would take almost four hours’ travel time and, with both parents working, the boys cannot go to Tyrrelstown without this support.
For many parents around the country at this time of year there were obligatory photos posted on social media of loved little ones making their way to school for their first day. For Rory and Dylan, the Department of Education has no such day planned.
1) There is no suitable place available in ANY State school in Dublin for the boys.
2) There is no suitable place in ANY school in Kildare for the boys.
3) We have been asked to look for suitable places in a State school in Wicklow and Laois for the boys. Bear in mind the disabilities these boys have and what is now being expected of them if there are places available in Wicklow or Laois.
4) There are two suitable places available in Tyrrelstown at a Specialist Primary school for Autism totally funded by the State but we have been refused transport.
We should be excited about the boys’ first day at primary school and looking forward to seeing continued progress and improvements. Instead, the level of stress caused by this whole ludicrous situation is overwhelming. The boys don’t have a school. The Department of Education has no plan.
Yvonne appeared last week on Lunchtime Live with Dr Ciara Kelly on Newstalk. There seemed to be quite a reaction to the piece and a senior adviser to the Minister for Education reached out to us. We were very hopeful, as they indicated that this was now being taken very seriously at the highest level.
However, as the week progressed it became more and more obvious that the department has no plan and is not treating this matter with the priority it deserves.
The department contacted us and explained that it is working in a vacuum and has not even reviewed the boys’ file, has not spoken to our SENO, or researched the most basic information about the boys in order to decide the best solution. It cannot tell us what will happen to the boys tomorrow and is not planning a contingency solution while the longer-term plan for this year is being explored.
When we suggested that they provide transport to Jonix in Tyrellstown until a solution is found, we were gobsmacked to hear the reply: “No, that doesn’t suit us.”
Have they for a moment considered what might suit Rory and Dylan?
They are acting as if this is a surprise problem that they are now suddenly trying to resolve.
The boys have been due to receive primary education since 2016.
Our children are non-verbal but we have strong resolve and a deep love for them that has no bounds. We will be their voices. Life is challenging enough but we never thought that we would have to fight the system to give our boys the chance of an education.
Like all the other little boys and girls around Ireland, Rory and Dylan, too, deserve the right to go to school.