Cork mum: We have faced a relentless uphill fight for with a never-ending stream of form filling, countless calls and emails

LAST weekend, just before schools were reopening for children with additional needs, I found myself feeling hopeful.

Hopeful, that finally our little girl, Evie, was going to be back in school, surrounded by her friends, teachers and SNAs, doing the things she loved.

Yet, my heart also sank when I realised that in the entire last year, our five-year old daughter with autism had a total of two months of preschool, and four months of school.

At an age that’s crucial for any child, but particularly for her, when early intervention is key, this is nothing short of an educational disaster. Every day, I wonder whether this will have a life-long impact on her.

In Ireland, early intervention has become largely the job of schools, due to a perpetual funding crisis of disability services and therapies for children with additional needs.

In many parts of the country, an understaffed and under-resourced system is creaking at the seams and leaving vulnerable children fall through the cracks, and carers in a permanent state of heartbreak.

Speech and language therapy (SLT), as well as occupational therapy (OT), should start well before school age, and be provided through the public health system. Yet, for our daughter, who is non-verbal, we have had to source and pay SLT and OT services mostly ourselves.

Since her diagnostic process in 2017 began, the scarcity of such services has only worsened, the current Covid crisis increasing waiting times even more.

To secure Evie’s educational future, we have faced a relentless uphill fight for with a never-ending stream of form filling, countless calls and emails.

Soon, she will be aging out of the early intervention waiting lists. Without any sign of a one to one speech therapy appointment, she will be moved onto another waiting list, with more forms to fill, I am sure.

While some of these bureaucratic battles have been exhausting at times, the last year has by far been the toughest we have ever had to endure. Our daughter can’t tell us with words but we know she struggled.

During the current lockdown, she has stopped using words she had acquired through hard work, and reverted to vocal stimming habits that had not resurfaced since she was two.

She was anxious, often slept poorly, and we as a family all came under enormous pressure. Pressure without access to our usual family because of Covid.

With the dramatic increase in Covid cases after Christmas and new variants on the scene, I believe the right decision was made by keeping schools closed. But it was the amount of announcements about special needs schools without any finalised plans in place that did the damage for us.

The uncertainty and the constant back and forth were frustrating, and had managed to obliterate any sense of hope for many parents and children.

All that was achieved was needless division and disappointment. The mixed messaging and lack of workable plans for meeting the educational needs of children like Evie during the January lockdown was staggering.

Something finally changed for the better this week. 

The moment Evie saw her school uniform she had the most radiant smile and I couldn’t help but tear up as if it was her first day of school all over again.

Nonetheless, while things are definitely moving in the right direction, and from March 1 SEN schools are back to 100% capacity instead of 50% like this week, there were many senseless inconsistencies behind the school reopenings on February 22.

The main goal of getting all children with additional needs back to school in a consistent and fair manner had been missed by a mile in some cases, once again breaking carers’ and children’s hearts all across the country.

The further deepening of their educational disadvantages could have easily been avoided by addressing fairly that some children with additional needs are catered for by mainstream classes, some by ASD units, some by special needs schools but all with the one aim in mind: to their different ways of learning and helping them live life to the fullest.

Instead, this week, which should have been entirely full of joy and hope, in some cases, once again, added more stress and dejection in a time when all we seem to ever experience anymore is stress.

Covid is making life hard for so many of us. In some cases, lives have been lost and we all want to prevent further deaths.

Nobody knew the impact of the first lockdown last year, but nearly a year has gone by and no better education provisions were in place for the 2021 lockdown. Again, children were being left behind. And not just children with autism. To address this pressing educational issue, Covid is no longer an excuse.

Nobody knows how long this health crisis will last. We are all hoping the vaccines will work, that things will eventually go back to normal.

In the meantime, are we going to deprive a whole generation of children of an education?

We must do better.