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Why Caring For a Child With Special Needs Is Hard

A Mom on Raising a Child With Autism: "If This Job Was Advertised, I Couldn't See Many People Applying"

Nicola, a blogger and mom of a 6-year-old son with autism named Riley, knows that parenting a child with special needs isn't for the faint of heart. As her son's sole caregiver, she's honest about just how much effort goes into raising him. In a recent Instagram post, Nicola explained that gone are the girls' nights out, restful sleeps, and the feeling of ever being remotely relaxed. Instead, her days are filled with making sure Riley's vast needs are met.

"Let's talk about [parenting a child with special needs] being a full-time carer, possibly the hardest job there is. Yesterday someone asked me if I worked and my answer was no," wrote Nicola. "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 experiences, this is not the case. If anything, Riley depends on me just as much as a toddler, yet he is 6. It will be like that for many years to come."

Although Nicola doesn't have a typical 9-to-5 job, as a full-time caregiver and given her son's diagnosis, she's required to wear many hats, so you can bet it can be as frustrating — if not sometimes more — as many other jobs. "A lot of jobs come with stress. This comes with a level of stress you couldn't imagine," she confessed. "You are expected to become a medical professional, a therapist, a pro at admin, and learn to live on the [most] minimum sleep possible, all while waiting for a new curve ball to be thrown at you at any time."

While it's no secret that welcoming a child into the world can stress even the most patient parents out, caregivers of children with special needs in particular rarely get a moment to themselves.

"Meeting up with friends, trips away and nights out can become distant memories."
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"Stress takes its toll, as I have learned 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," she said. "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 calendars and you might be free in 2023 on the same day for an hour."

Nicola continued, saying that time can appear to stretch on: "The days can be so long. Endless sometimes. Waiting for someone to come in to tap you out for five minutes to get a breather," wrote Nicola. "Waiting for nap time. Or waiting for [bedtime] so you can finally sit down at 10 p.m. and have an hour to yourself before it all starts again in the morning."

Nicola feels that if her role was put in the paper or posted online, it wouldn't get many interested candidates. "If this job was advertised, I couldn't see many people applying," she said. "But as carers we rarely choose this role, it chooses us. And out of sheer love we would never say no. 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."

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