A mother writes: ‘My son has severe autism. I’m starting to feel quite desperate’
Covid Stories: My son’s support needs don’t go away because there is a pandemic
Nicola Scott with her seven-year-old son Patrick playing outdoors before the Covid-19 outbreak.
After six weeks on lockdown with my son, who is seven and has severe autism, intellectual disability and ADHD, and is nonverbal, I am starting to feel quite desperate.
Patrick is badly missing his routine. Normally he would get the bus to school at 9.15am, and is home at 3pm. He loves school and his teachers and special needs assistants and is missing that structure and support terribly. He cannot express his distress verbally, so instead it comes out in his behaviour.
It is so hard to watch my son struggle like this; all I can do is try to reassure him. The teachers are doing their best and sending on work, but I do not have the skills and resources of a school setting, although I am trying my best every day.
He would have had horse riding and swimming every week, and we walked daily from our home to the shop and playground, the highlight of his day. That has all been ripped from him overnight, causing huge distress.
It is next to impossible to teach him at home except in five-minute intervals, because he is so unsettled by all the change. His need for exercise is insatiable; he needs long walks twice a day or he becomes disruptive and destructive around the house.
We live in a busy estate in a village where lots of cars circulate. This makes taking my son out within the 2km zone quite dangerous, as he has no safety awareness and tends to run away. We were told of a softening of restrictions for people with disabilities, that the Gardaí would make allowances to travel outside the 2km for necessary exercise, but the safest areas where he can walk such as parks and woodlands are cordoned off. If a guard stopped us my son would be very intimidated, and it could lead to a meltdown, so I just don’t bother.
Our days start at 5.30am when my son wakes. It is full on until he finally goes to bed. He needs constant supervision. There is no time for phone calls to chat to anyone. I’m lucky if I can get a cup of tea in peace for five minutes. It’s so tough.
Single parents are being treated very badly in shops and in public when out with their kids. I have heard accounts from friends of people being hostile, and even refusing children entry to shops, or making comments while parents are out walking their kids. Bringing my son to the shop is a no no, as he would not understand social distancing at all.
Although we are not together any more, my son has a good relationship with his father, who supports me at the weekend. This is when I do my shopping and support my parents, who are elderly and cocooning.
We have good days and bad, really helped by the good weather, but I am finding I feel more and more tired each week as it is so full on.
Before the Covid-19 outbreak, my son was finally accessing speech and language therapy and occupational therapy after a long wait, and we also had the support of Autism Services in our area. Now staff from these services have been redeployed, and these supports have vanished. My son is also on a waiting list for CAMHS psychiatric services for his ADHD, as I was concerned the stress of the situation was making my son’s condition worse.
These supports are not a luxury but a necessity for my child, and children like him. I fear a regression of the skills we have worked for years to help my son with. Going to school, the shops and all his activities, as well as the therapies, teach him the skills which do not come naturally to children with autism.
I don’t know how we are expected to manage without these vital services and supports. I feel invisible in this crisis, like families like ours are being ignored, as if our situation suddenly became normal and doable without support.
I understand the need for the restrictions to contain the virus and protect the wider community. But my son’s support needs don’t go away because there is a pandemic. It just means we must do it alone now. I worry for both our mental health as the weeks turn to months.
I really hope that come May 5th, the Government has some clear direction for families like ours. This virus is not going anywhere, but we cannot manage for much longer under these restrictions without support.