We are all facing the same storm during this relentless health crisis, but the boat that family carers find themselves in is more like a paper boat.
Each time a lockdown was announced, it filled me with anxiety about what lay ahead. Many parents I know who have a child or several children with additional needs, share these feelings on lockdowns.
During the recent, somewhat toxic, debate about whether special needs schools should or should not reopen, I felt a level of discomfort about the fact that many of those arguing against reopening special needs schools have no idea what a lockdown means for a family like ours, and why lockdowns are so damaging.
We have two children, a non-verbal, nearly five-year-old daughter with ASD and a two-year-old son, who is waiting for his Assessment of Needs due to speech delay and some other behavioural red flags.
The uphill battle of fighting my children’s corner began way before the first lockdown in March 2020.
In the Ireland of 2021, access to the most basic things such as speech and occupational therapy (we are waiting since 2017) and a suitable school place is not a guarantee for children with autism. It is a full-time job providing care and securing their future.
For my daughter, the little support she receives from the public health and education system is provided in the school she attends.
Her school is so much more than just a school for her. It is a space for improving her social and communication skills, a place where experienced and well-trained teachers and SNAs know how to keep her anxiety in check with specially tailored lessons, structures and routines, exercises suited to her needs, and sensory activities.
With every lockdown, that support evaporates, and with it any semblance of a much-needed school routine or learning progress.
During the first lockdown, my daughter lost some of the skills she had learned. She got so anxious she could not sleep much and started hitting herself. This is not something any parent ever wants to witness.
I had no way of explaining to her why she had no preschool to go to from one day to another. She was too young for social stories, a kind of explanatory picture story that helps children with ASD to visualise when there is a challenge or extraordinary event ahead.
She had no speech therapy (even if privately funded), and no visits to Granny and Grandad: all her support evaporated in a day due to Covid-19.
The first lockdown passed, the summer arrived, and I ended up giving up my job.
With childcare unavailable during lockdown and the summer period, there was only so much longer we could juggle all our work and family responsibilities between both of us.
The ray of hope was September when my daughter started her first year of school but, because of Covid-19, visits acclimatising her to her new surroundings before the school start date were not allowed.
While a necessary safety precaution, I also had some doubts about how well masks would work in a school with a significant percentage of non-verbal children. But my daughter was happy there, and we were all glad when the schools opened. But for how long?
During the second lockdown, our daughter was able to continue going to school, which made a big difference. There was no learning regression or increased anxiety.
Despite this, the lockdown hit me like a tonne of bricks.
During the pandemic, no counselling for family carers was made available via the public health system.
Everywhere was understaffed and under-resourced before Covid, so support for carers was not going to improve in a healthcare crisis.
The only free and immediate services available for carers and children with ASD are those provided by charities. I availed of some of those supports through Family Carers Ireland and made it to Christmas.
After Christmas, the infection numbers went through the roof, a lockdown was proposed and school closures were on the cards.
I understood why, but I was relieved to hear that special needs schools were going to reopen. Somehow, announcing this lifeline first and then taking it away was worse than just announcing school closures from the get-go.
We have really struggled in the last week. My daughter is once again distressed, and not sleeping, and my son is picking up on all this stress and also upset more than usual.
Over a week into the third lockdown, and news reports of special needs schools reopening are fuelling discussions about whether they should open or remain closed.
I really hope they do reopen, not because I don’t care about my daughter’s health or the health of teachers and SNAs, or because I am too lazy to look after my own children, but because another month of this lockdown might just break us.
We as a family had to overcome a lot of obstacles, uncertainty and setbacks last year, but the prospect of watching my daughter’s mental health decline again (and my own) is a lot to cope with.
My daughter’s school hasn’t had a single Covid case, partially because there are only six children in her class.
With small classes like such as these, the benefits outweigh the risks for parents like us, and no, the majority of children with special needs do not have underlying conditions.
I understand not everyone will feel comfortable sending their child to school, but the option should be there. Remote learning does not work in my daughter’s case.
If this Covid crisis lasts much longer than expected, there have to be better, more inclusive solutions. We cannot let the current inequalities families with additional needs children already face become much worse.