Work, kids, special needs – making it fly….2 Comments
I had given up on having a career again… returning to work after children is not straight forward for any mum. I knew it was close to impossible for me because of Rosy’s special needs. The endless commitments of her care, appointments with school, hospital and the unpredictable nature of her needs, meant no workplace would even consider me.
What boss was going to say, “Sure, roll in to work at 9.30 after dropping off two kids at seperate schools and then leave again at 11.30 to collect Rosy because she only does school in the mornings.” And that’s without the mornings I’ll be late in because the TA at school had a couple of questions or the days I need to leave early to take Rosy to her eye check up at the hospital or some such!
We all know what I’m talking about…
As a mother you sacrifice all the normal things you are told to expect: sleep, social life, money and work, but then those things cut deeper and last longer as your child’s special needs or disability become all-consuming. The prospect of working seems very distant…
I have been out of the workplace nearly seven years, much longer than many of my counterparts who don’t have children with disabilities. It’s not uncommon for mothers like me to take a decade or more out of work… for many it’s forever.
I did try to go back to my old job, but my boss would not let me work from home a couple of hours a week, just enough flexibility to make it all fit. He presented me with a 14-page assessment form and turned me down because I did not have a wheelie chair at home… So I had no choice – really, none.
I became resentful and very low – my own dreams just dissolved into a brutal treadmill of caring, appointments and battles for her needs. Most special needs children have a lifelong condition and their family adapts to over a lifetime, often involving huge dedication in terms of time and effort.
Many mothers of children with special needs feel they DO work – at home! You have to become an expert in special needs and your child’s difficulties and behaviours. You do research, plan and manage their education, I have had to become a legal expert, a form filling expert, a social care expert, a SALT expert, an OT expert. Do educational work with Rosy at home, her therapies at home… the list is endless.
I totted up the hours, I average an extra 12-15 hours a week in terms of Rosy’s care needs, appointments, hospital visits and meetings with school.
It’s easy to underestimate how much time and effort and self-sacrifice is involved in being a carer. Many children have lots of hospital appointments and stays or lots of time off school with complex medical conditions. Children with disabilities get ill frequently – Rosy suffered from seizures, which meant the slightest temperature I would need to keep her off school or they would need to send her home.
I thought I would try and get a feel for the views out there about this and popped a post on MumsNet… the response has been astonishing… Mums are really struggling with this. I had more than 100 replies in just a few hours…
Here are a few of their thoughts…
- Appropriate, affordable childcare is the main problem, but stress and exhaustion come a close second to why mothers of children with disabilities find it hard to return to work.
- If mothers give up work families rely on one salary and the wage-earning partner tends to work long hours, which further polarises childcare responsibilities.
- The lack of support and understanding from employers mean many feel they have suffered discrimination in the workplace and have been forced out of their job. And because many spend all their time battling for their child’s needs to be met, they don’t have the time or the funds to fight discrimination in the workplace.
- Leaving a child with disabilities is harder – good quality care is the main barrier. And often mums feel they are compromising on their child’s care, so there is also a heightened sense of guilt.
- After-school clubs and holiday schemes are not an option because of the care my child needs. If I want to send her I have to find somewhere able to take her and then send a carer with her – I looked into it – £163 per day! Which makes 13 weeks of school holidays a year a major problem.
- Something else people forget is that you can’t share pickups, play-dates after school or exchange childcare. Mothers are often a child’s main carer 24 hours seven days a week, and can’t just share babysitting, sleepovers and other childcare arrangements in the way you can with children who do not have special needs or disabilities.
- I know a single mother who was told by her local authority, she should give up her job to make up the shortfall in appropriate care for her son. This, after she had struggled to get back into work, came as a real blow especially as they should be ensuring sufficient childcare for children like hers.
- The current job market is so tough many mums feel discrimination is inevitable when they need flexibility or time off to deal with a child’s needs.
- Did you know, only 16 percent of mums of children with Special Needs work compared to 61 percent of other mothers?
- Families with a disabled child pay at least 5 times more towards childcare costs than parents without a disabled child.
- Women are almost 3 times more likely to start their own business or be self-employed than men. Mumpreneurs, contribute £7.4bn to the economy each year.
How to make it work?
Some of those women setting up businesses are mothers of children with special needs or disabilities – they are not doing it because it is ideal, but because it is the ONLY choice open to them! It is though necessity!
It’s not the easy option. But we do it because working for someone else who doesn’t understand is even tougher than going out there on your own! At least with Rosy & Bo, I work from home at all sorts of odd hours of the day and night – snatched where I can so it fits around my children and I can also call on the support of two colleagues when I’m in a tight squeeze.
Another mum told me, the only way she had managed to stay in work was by reducing her hours, taking a demotion to allow her to have a more flexible job & by having a wonderful employer and colleagues who are always willing to help her out if they can.
What we can bring to the workplace?
I have been challenged and pushed to my limits bringing up a child with special needs. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without her.
It teaches you perspective, priorities and patience like nothing else.
We are resilient, resourceful, adaptable, great negotiators, formidable advocates and extremely hard workers.
What needs to change?
The main issues that, if we can find the energy, need to get someone to listen to, are:
- Better access to specialist childcare that should be as affordable as it is for children without disabilities.
- Employee rights to flexible working so allowances can be made to take time off for appointments, illness and support for the emotional wellbeing of parents and children.
- Career counselling and a re-training grant to help long-term carers get back into work would be very valuable and so appreciated by many mothers like me.
Me? Well… I was left with few options… Here and there I looked for other opportunities – working freelance, franchise businesses, all sorts of things… but so many things were closed to me. I resigned myself to being at home full-time or looking for poorly paid part-time, term-time only work.
But against all notions of sense, I decided to become my own boss and set up Rosy & Bo! My own business would allow me to fit in my mothering and caring commitments. Give me a sense of identity again and hopefully an income.
But I wanted to use everything I had learnt about family life from a special needs perspective. Rosy & Bo was a way to combine all that knowledge and empathy with a real desire to bring a bit of gorgeousness to the world of special needs and disability.
Frankly, I can only do this because I have the support of two other fantastic women co-founders, two glorious grannies who lend a hand and a husband prepared to help me make it all work and cook the odd delicious omelette! It’s feels like walking a tightrope, but I know how lucky I am – many mums simply don’t have the chance.