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The pandemic has had a devastating impact on my autistic brother and my struggling parents

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As soon as I turned 25, conversations among my friends went from parties and travel to kids and weddings.

These discussions strike me as premature, but unfortunately as women we have to consider whether we want children in the future and it’s a question I’m struggling to find an answer to.

I know I would like to have children, but I don’t want to end up like my parents and have one child for life.

Some people might think that sounds selfish, but it’s something everyone should think about before having a child because there’s always a chance they could take care of them for the rest of their lives.

I’ve always thought of that, but since the pandemic it’s come to my mind a lot more.

I have a 21 year old autistic brother and his whole world has been turned upside down, he is not the person he was before Covid-19 took over.

It’s heartbreaking to see him suffer like this and it’s hard to see my parents struggling to run their own lives while either caring for him or worrying about him.

When the government announced an additional holiday for St. Patrick’s Day, the country cheered, but not my parents. They sighed because it meant extra work and stress for them (like any holiday).

Due to the high needs of Chris, my family has never been what you would call conventional.

Only one parent was allowed to attend my and my sister’s communions, confirmations and other important events.

As a small child sharing a room with my brother, I was regularly woken up at night by his screaming and banging against the walls.

Everything we ever did with him involved a rigorous plan, even a trip to the store as he couldn’t do anything outside of his routine.

Despite all these difficulties, nothing compares to what he is going through now. As I write this, he is screaming and crying below, saying, “I want to call an ambulance” — a phrase he says almost daily now.

Before the pandemic he was doing pretty well, going to his daycare, watching TV in the evenings and going to football on Saturdays.

Chris has never looked after anyone other than my parents, me and my sister, but just prior to the pandemic we were able to leave him alone for an hour or two.

That was a huge step forward for him but then Covid-19 hit the world and now if he pulls through without collapsing it’s a good day.

We try so hard not to do anything that might upset him, but it has become impossible to know as almost anything can make him upset and scared – even just looking at him. A few weeks ago I opened the living room door while he was in it and he was screaming and crying about it for a few days so now my dad is panicking if I go anywhere near that room while he is in it.

Same goes for other areas in the house, I used to have a desk in our back room where I would work but he decided he wanted that too. Before he took over this space and we were all still working from home, there were days when he would stand behind me crying while I was writing to a deadline.

Although living at home is tough, I’m incredibly grateful to have a roof over my head at all and unlike my parents I can leave whenever I want and I still have my own life.

Right now they don’t have time to think about themselves and they take it upon themselves every day saying it’s hard to imagine the future.

A few days ago I attended a public meeting about the need for more autism courses in South Dublin.

I was very emotional at the meeting when they talked about discrimination and I thought of all the times my brother had been discriminated against and I couldn’t help but think – if Chris was more accepted in this world he would then fight less? If treated the same as his neurotypical peers, would he have panic attacks and injure himself daily?

At that meeting, several parents spoke about the relentless efforts being made to get their child into school, with one man saying he had called 40 schools to no avail.

It brought me back to when Chris was young, feels like very little has changed in 10 years.

When my mother tried to get him into my high school which had a brand new ASD unit, she was told he wasn’t suitable.

He would spend hours on a bus every morning and evening for elementary school as there was no one in our area to take care of him.

Unfortunately, the same was true of his secondary school experience.

Still, he enjoyed where he ended up going, even though it was another long bus ride away.

Overall, my father says his school experience was quite positive, despite the odd teacher or SNA who didn’t seem to understand autism very well.

But something that I think so many people and policymakers forget is that disabled children become disabled adults, and since Chris turned 18 it seems like he’s not that much of a priority.

Before the pandemic, he was making steady progress and, despite having a few bad days, seemed happy overall.

This is the first time we’ve seen him regress so drastically and that’s why I’m worried for him and I’m worried for my parents as we and no one else seem to know what the answer is.

https://www.independent.ie/irish-news/the-pandemic-had-a-devastating-effect-on-my-autistic-brother-and-my-parents-are-struggling-41564659.html The pandemic has had a devastating impact on my autistic brother and my struggling parents

Fry Electronics Team

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