29 January 2017

Balancing Acts - Special Needs



I am a full time carer to my three children and partner.

I had no idea that my main career would be caring for a family out of the ordinary. I worked in catering from 15 years of age until I had my first child at 22. It's always been something I've been very passionate about and my dream job was to train as a chef. As my children got older I was looking for opportunities to get back into work and continue my career possibly even taking a course at college to train for my dream career.

But as time went on and my middle child's needs became more intense that dream was put firmly to the back of my mind where I can only dream about what might have been.

So I took up bookkeeping for my partner who works in the building industry and focused on that for a few years, it was good to do something different and I really enjoyed it, however I just simply couldn't put the time in that it needed to make a successful career out of it. The business grew and as it grew so did the never-ending stream of receipts and invoices and managing all of this along with a constant stream of appointments and meetings just made me ill. So in the end I had to give that up too.

With a heavy heart I knew that my working career was over. My family needed my time more and I couldn't be successful at both things.

Having a partner and children with numerous disabilities has in effect rendered me unemployable. If I couldn't put the time into my own business there's no way anyone else would employ me. I needed too much time off for meetings, I needed to be constantly available should any of the children's schools needed to contact me and the admin work created by these disabilities was in itself a full time job. The prescriptions needed to be kept up to date, I needed to manage appointment times and dates and reports. I have several folders for each child all organised into school and medical reports. The whole family are looked after by several teams all over the country and I am the only person that can manage all of this accurately.

It's a very difficult job caring full time for more than one member of the family. I have my own health issues to deal with now too, and I often find myself forgetting about my own needs as there just isn't time to look after myself.

I'm not one for New Year’s resolutions but my main goal this year is to try and remember to look after myself. Because I cannot look after everyone else properly when I am poorly, and my main illnesses are triggered by extreme stress. So less feeling guilty for resting, and more time spent making sure I am as close to 100% as I can be so that I don't fail at my only opportunity of a "career" and regardless of whether it's my own family it's also my job too. It's just a shame that one person can only be paid for caring for one person because if I didn't do it, it would cost the government 3x the amount to pay for someone else to do it.

I know first-hand how difficult it is caring for children with special needs anddisabilities so my advice to you if you're reading this is to take a break, look out for yourself and be kind to your body. Don't feel guilty for having a rest mid-day; don't feel guilty for lounging with the kids and watching a film when you've over done it.

Make time to visit that dentist, that GP Appointment you've been meaning to make for weeks. Go and have your eye brows done or your hair cut. Have that long leisurely bath. If anyone offers you help, accept it, and take up their offer. And don't be afraid to ask for help either. There is no shame in not being able to do it all. In fact I'm here to tell you it's actually impossible because that's why I am ill myself.


I tried to do it all.

I made myself poorly so please don't make yourself poorly. You can only do your best when you feel your best.You're a fantastic parent and you need care too.


This Blog post was originally written for and published by Family Fund here: Balancing Acts


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