My life was very different before Scarlett. For one thing I had a career. I worked as an Accountant and Business Analyst for a number of very large well known organisations in London.
I worked hard to get where I did in my career. I studied for many years, sat professional level exams and worked very, very long hours. It was not uncommon to get home at midnight, to drive a six hour round trip to attend a meeting or to stay away from home on projects. Finance, once you reach a certain level, is a male dominated, competitive, sometimes aggressive place to be. You have to be one of the boys, part of the culture, willing to put in a fifteen hour day and match them drink for drink down the pub.
And I loved it. I loved the deadlines, I loved the challenge, the high profile meetings and I loved the after work drinks and the London culture.
And then I had Scarlett and everything changed.
I knew very quickly that this career of mine was not going to fit with my idea of Motherhood. I didn’t want to employ a Nanny and I didn’t want to only see my daughter at weekends. I’d waited a very long time for the chance to be a Mum and the hours, the stress, the level of commitment expected in my profession would not allow me to be the Mum I wanted to be.
Scarlett’s diagnosis only added to this conclusion. She needed me here, available to take her to physio, speech, hospital appointments. And I wanted to be the one to take her. These appointments are not a burden, they are part of being Scarlett’s Mum and I feel honoured to be the one to go with her. She needs me to work with her during the day to support her learning, to work on her fine motor skills, to play games to encourage her speech. To cuddle her and read her stories and let her know she is loved.
But, like everyone else, we have a mortgage to pay and we do not have a money tree growing in the back garden. So I had a dilemma. How would I balance all of these things: the appointments, the time I want to spend with Scarlett, the income we need as a family and my career – I had after all worked incredibly hard to become an Accountant, I didn’t want to give that up completely.
The answer was obvious. Start my own business. Be a self-employed Accountant. I could chose my own hours, pick my own clients, work around Scarlett’s needs. Easy, right? No. Not easy at all.
The first challenge was finding a nursery. We felt that two days a week would give me time to work and would greatly benefit Scarlett by giving her access to other children her age and adults experienced in childcare to support her development in different ways.
Any new Mum will tell you how hard it is to find a nursery they can trust with their still very young child. The thought of leaving the person most precious to you, the person you have been devoted to every second since they were born is almost unimaginable. That task was even harder for us with all the extra considerations we had to make. We had to find somewhere where she would be fully supported, seen as an equal, encouraged to mix and play with the other children. The nursery we chose had to have a good understanding of the many factors involved in caring for Scarlett.
This was harder than it sounds. Many of the nurseries we visited simply did not understand what they needed to do to support a child with additional needs. The Manager of one nursery even felt it was appropriate to tell me that she had once been pregnant with a baby diagnosed with Down syndrome and had chosen to abort. She may as well have pointed at Scarlett and said “I didn’t want a baby like yours”. Needless to say we got ourselves out of there as quickly as possible, never to return.
Eventually we found a place for Scarlett. A wonderful nursery with a manager and staff we trust. I can leave Scarlett with them knowing that she is safe and secure and loved and learning in a supportive environment. I miss her terribly, but I don’t worry about her.
The next hurdle was the local authority.
Because of Scarlett’s disability she needs to have a dedicated care assistant (a one to one) with her at all times. This person supports her learning and development, works with her in speech and Makaton signing, ensures her safety in things like feeding (Scarlett’s lower muscle tone make her more susceptible to choking), and much, much more.
To cover the additional costs of the one to one the nursery must apply for funding. The manager of the nursery and I worked hard to provide detailed information on all of Scarlett’s needs, we sourced reports from professionals involved in Scarlett’s care. Everyone was in agreement that Scarlett required one to one support.
We were turned down for reasons I still don’t fully understand. They took a long time to give us the decision, lost the report, gave us the wrong meeting date and generally made the whole process as painful as possible. I pointed out that Scarlett had already been granted the middle rate Disability Living Allowance, through a similar process of form filling and report gathering, the “powers that be” had already accepted that Scarlett has a disability and that she has needs over and above those of other children her age. But the system is not joined up, it’s a separate process and a separate decision so we had to go through it all again.
I also pointed out they were preventing me from working. Surely it would be more cost effective for me to work and pay tax then for me to be unemployed and on benefits? Again, the system is not joined up. No one looks at the bigger picture.
Eventually, on appeal (a great deal of pushing from me), they agreed that Scarlett required the extra help and granted the funding. Scarlett immediately bonded with her wonderful one to one as well her 2nd one to one (the lovely lady who supports Scarlett when her main one to one is not there). Between them they’ve taught Scarlett new skills, confidence and provided the reassurance I need to be able to leave Scarlett and earn a living. And I love them for that.
So, sorted. Right? Wrong. Yet more challenges.
Next I had to deal with the professionals involved in Scarlett’s care. We have some wonderful people supporting us, I cannot fault Scarlett’s Doctor, or her Occupational Therapist or her Physio to name a few. But not all of the professionals have made it easy.
I was told by one healthcare professional that I should not return to work. That I should “invest” in Scarlett full time and leaving her in nursery even for a short while would be detrimental to her future. I cried for two days after that conversation. I felt like the worst Mum in the world, guilty for leaving Scarlett, selfish for returning to my career.
I had a long conversation with my very lovely, very supportive, not sure what I’d do without her, Health Visitor. I cried. A lot. And she pointed out that most Mums have to work. Down syndrome or not there are bills to be paid, and £61.35 per week Carers Allowance does not make up for a lost salary. I’m not being a bad Mum by earning money to keep a roof over my daughters head and I’m not a bad person for wanting to keep my career.
I also had to “fire” some of the NHS support workers we had and replace with private therapists. Certain Therapists would repeatedly cancel and rearrange appointments at the last minute, turn up late or not at all, and when they were here offered a very poor quality of service. It was clear this would no longer be manageable with the number of appointments we have for Scarlett, other family commitments I have and now trying to find time to start a new business. My week has to be carefully planned and I need to be able to rely on the professionals in our lives.
The final pressure in my big plan to be self-employed is a financial one. It takes time to build a business, set it up, build up a client base and generate a half decent income. And while I’m working all the hours I can, including most evenings after Scarlett goes to bed, the cost of nursery and private therapists outstrips the income I am generating in my fledgling business.
I can see how some parents of children with a disability fall into financial difficulty, live a life on benefits and struggle to balance all the different balls in the air. I’m lucky, by pure fluke I am in a profession where I can work for myself and therefore chose my own hours. We are able to keep our heads above water until I’m making a sensible income and I have an incredibly supportive husband who does everything he can to help me get my little business off the ground. But it’s hard and I’m tired and I can’t remember the last time I had a night out with my husband.
It’s a strange time in my life, it’s exciting and scary and utterly exhausting and I hope I can make this work so that I can be the Mum I want to be for Scarlett.
Oh … and if you need an Accountant, you know where to come !