‘Do you work?’ My answer was no. I thought about that last night and realized, I was wrong.’: Mom of autistic son reflects on 24/7 job of being a special needs mom

“Yesterday someone asked me, ‘Do I work?’ And my answer was ‘no.’

I sat and thought about that last night and realized I was wrong. I may not have a job, but I work. And I work damn hard. 24/7. 365 days a year. No holidays. No bank holidays. No sick days. Bad pay!

Because I have someone who depends on me 24/7.

Courtesy Nicole Duggan

When you become a parent you expect this level of dependency when your child is a baby. But as they grow they should, in theory, become more independent.

In a lot of our cases, this is not the case. If anything Riley depends on me just as much as a toddler, yet he is 6. And it will be like that for many years to come. He is autistic.

Courtesy Nicole Duggan

A lot of jobs come with stress. This comes with a level of stress you couldn’t imagine. You are expected to become a medical professional, a therapist, a pro at admin, learn to live on the minimum sleep possible, all while waiting for a new curve ball to be thrown at you at any time.

Stress takes its toll, as I have learnt the hard way this year, and can have an effect on your health that leaves you being the one who needs to be cared for. But we still can’t relax, because we still have someone to care for. It doesn’t go away.

Meeting up with friends, trips away and nights out can become distant memories. Because your tribe becomes parents in the same position. Now try to sync your calendar’s and you might be free in 2023 on the same day for an hour.

Courtesy Nicole Duggan

The days can be so long. Endless sometimes. Waiting for someone to come in to tap you out for 5 minutes to get a breather. Waiting for nap time. Or waiting for bed time so you can finally sit down at 10 p.m. and have an hour to yourself before it all starts again in the morning.

If this job was advertised, I couldn’t see many people applying. But as carers we rarely choose this role, it chooses us. And out of sheer love we would never say no.

Courtesy Nicole Duggan

That doesn’t mean it is easy. That doesn’t mean there aren’t days we cry for no reason. Days when we ask why? Or days when we wonder if we can do the same again tomorrow.

But we always do.

So in future, when I’m asked, my answer will be different.

I do work. And bloody hard.”

Courtesy Nicole Duggan

This story was submitted to Love What Matters by Nicole Duggan, 31, of Cork, Ireland. Follow her on Facebook here and Instagram hereDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube  for our best videos.

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