Juggling Work with a Special Needs Child

I came across an article recently where a parent/Mum spoke about her constant juggle with her home and work life balance. It got me thinking about my own work/life juggle. If you would like to check out the article written by Tania Tirraoro please check it out here at Special Needs Jungle.

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 it all… excellent career while juggling childcare and home life. For the most part, it worked, after having my eldest (11) I had no choice but to return to full-time work. Unfortunately, mortgages don’t pay themselves! I was lucky my Mum worked afternoons, so she had my daughter all day on a Monday and every morning. It was a life saver, 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 (8) things were going to be very different, he was born with Strep B and developed meningitis at three days old, please see my other post ‘My Son was Born with Strep B’.

Suddenly I had a baby that needed physio, occupational therapy, consultants, tests, scans, hospital appointments and needs beyond an average child. I was ever hopeful that my employer would understand my need to work part-time, it wasn’t your average circumstances. I didn’t return to my old job, it was no longer suitable and for a year I muddle along. I quickly realised how I saw flexible working, wasn’t how my employer did. I was continually taking holiday to attend appointments, having unpaid leave because nursery called as he had a temperature and the push came when I had to cancel three of his appointments. Appointments that once cancelled take three months to get booked in. I was having an emotional week, I walked into work and almost instantly nursery called and he’d been sick (he had reflux). I felt guilty for not giving work my 100% attention and I felt more guilty that my son’s needs were now suffering. He wasn’t doing well at nursery, he was 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 nursery wasn’t going to fill the hole.

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 that I just wasn’t getting while I worked. I worked part-time for a hotel, working a couple of evenings around my husband. It worked for us at the time.

Call me naive, but at this point, Thomas was still a toddler and developing averagely 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! Having taken the financial drop in pay, reducing the nursery costs, we lost most of our child tax credits. 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.

It just didn’t work, so I resided to the fact that it was best to remove him altogether. Fast forward two years, I thought the answer was 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 but suddenly he wasn’t hitting his milestones, 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.

CrayonsI guess back then, I still had this idealistic view that I wanted him to have a healthy life. Like most parents with special needs children, we want what is best for them and them to feel included. My dreams of a mainstream school were quickly fading when his epilepsy was diagnosed. He attended a special needs nursery, who were 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 for what it’s worth it hasn’t advanced my career, but it made me feel better.

How it Works for Us…

Three years ago, during my degree my husband came home from work one morning,  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 now 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 so I could be at 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,

School HolidaysOur biggest struggle is the school holidays, we have one or two decent child care providers in our area who can caterer for disabled children and as you can imagine they fill up quickly and limit the sessions that a child can attend. Unfortunately, we don’t have parents who are able to offer their services for a variety of reasons we rely on school, holiday clubs and a playscheme one or two 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 types of posts ‘the get to know me’. No real reason but to share a little bit about our lives and our world. Do you struggle with work/life balance? Have you had to make changes to your working life to adapt to the balance? Please share your own stories or blog posts below.

Thanks for reading…

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