Juggling Work with a Special Needs Child

Photo of Family Having Fun With football

I recently found an article where a parent/Mum spoke about her constant juggling with her home and work-life balance. It got me thinking about my work/life juggling, and it hit home and inspired me to write about my journey of Juggling work with a special needs child.

The Career

I’m not going to lie; I wanted a career! It was important to me; it was one of my life goals. Happy and content, Mum means equally happy and satisfied children! I wanted an excellent career while juggling childcare and home life. For the most part, it worked; after having my eldest, I had no choice but to return to full-time work. Unfortunately, mortgages don’t pay themselves! I was lucky my Mum worked afternoons and had my daughter all day on Monday and every morning. It was a lifesaver, as my employer was far from flexible. Childcare was one of our most substantial expenses, and even with my Mum’s help, it was still over £800 a month!

For three years, I worked up the career ladder, moved companies and continued to juggle family life. After having my son, things would be very different; he was born with Strep B and developed meningitis at three days old.

The Disabled Child

Suddenly I had a baby that needed physio, occupational therapy, consultants, tests, scans, hospital appointments and needs beyond an average child. I was hopeful my employer would understand my need to work part-time; it wasn’t your ordinary circumstances. I didn’t return to my old job, it was no longer suitable, and I muddled along for a year. I quickly realised how I saw flexible working wasn’t how my employer did. I was continually taking a day’s holiday to attend appointments and having unpaid leave because the nursery called if he had a temperature. The push came when I had to cancel three of his meetings.

Appointments that, once cancelled, take three months to get rebooked. I was having an emotional week; I walked into work, and almost instantly, the nursery called, and he’d been sick (he had reflux). I felt guilty for not giving my job my 100% attention, and I felt more guilty that my son’s needs were now suffering. He wasn’t doing well at nursery, struggling with his development, and I went home that afternoon and wrote my resignation letter. The relief I felt was one of the best feelings. I never wanted to leave, but it wasn’t about me. Thomas needed his Mummy, and a nursery wouldn’t fill the hole.

Kids Playing with Dinosaur Toys Inside a Classroom
Photo by RODNAE Productions

I Never Regret Making My Family a Priority

It was a decision that I have never regretted. It gave me time with Thomas to attend his appointments, plan for his future and spend the time I wasn’t getting while I worked. I worked part-time for a hotel, doing a couple of evenings around my husband, who worked for us then.

Call me naive, but at this point, Thomas was still a toddler and developing average on time, if not a little behind. He attended nursery two days a week, as I felt he still needed the social side of it, and secretly, I was hoping that once he was settled, I could get a part-time job and give up the evenings! We lost most of our child tax credits after taking the financial drop in pay, reducing the nursery costs. We muddled on for a few months until I cut nursery down to one day a week, it was pointless, but still, I wanted him to be like his sister and learn from others.

When Things don’t work out

It just didn’t work, so I decided it was best to remove him altogether. Fast forward two years, I thought the answer was to return to education and get a ‘proper degree. He was young, at a nursery, and it would work around it, and for the most part, it did. Still, suddenly he wasn’t hitting his milestones; the nursery kept calling me asking me to collect him for various reasons and then the file straw, I was two days late paying an invoice due to them undercharging, and they told me that they felt it best that he left.

I still had this idealistic view back then that I wanted him to have a healthy life. Like most parents with special needs children, we want what is best for them and for them to feel included. My dreams of a mainstream school quickly faded when he was diagnosed with epilepsy, and he attended a special needs nursery, which was terrific!

Six years on, I was still working evenings, having struggled to find a part-time job that contained the flexibility of hospitality. Degree under my belt, but it hasn’t advanced my career for what it’s worth, but it made me feel better.

Woman Sitting in Front of Macbook
Photo by energepic.com

How it Works for Us

Three years ago, during my degree, my husband came home from work one morning and told me he couldn’t do it anymore. We’d had a tough night with Thomas; neither of us slept well, and it made a decision we’d been struggling to make more comfortable. He would give up full-time work, become Thomas’ full-time carer, and I’d continue my degree. He works part-time from home, around Thomas’ school drop-offs and pickups.

I tried last year to return to full-time work; financially, one of us needs to work full-time. It wasn’t, however, that easy. I wanted something locally to be home within 15 minutes, but it was impossible. Most of the commutes were at least 30-40 minutes each way, and as a family, it would never work. I realised very quickly that part-time hours would be our only option.

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The Struggles

Our biggest struggle is the school holidays; we have one or two decent childcare providers in our area who can cater for disabled children, and as you can imagine, they fill up quickly and limit the sessions a child can attend. Unfortunately, we don’t have parents to offer their services for various reasons. We rely on school, holiday clubs and a playscheme one or two days a month on a Saturday. We are still lucky in that respect, but I do panic with all the government’s budget cuts concerning disabled funding that within a few years, they will be closed.

I like to call these posts ‘the get to know me’. There is no real reason to share a little about our lives and the world. Do you struggle with work/life balance? Have you had to change your working life to adapt to the ratio? Please share your own stories or blog posts below.

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