Getting back to work

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 !

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She’s so beautiful

“She’s so beautiful, she doesn’t even look like she has Down syndrome”. I hear this a lot. It’s meant as a compliment and I take it as such because she is beautiful. And she looks like she has Down syndrome. The two are not mutually exclusive.

I sometimes wonder why people like to tell me Scarlett doesn’t look like she has Down syndrome. It’s not true, I know enough children with Ds to be able to recognise the shared characteristics and we’ve seen enough Doctors who have known just by looking at her that she has Trisomy 21. I like way Scarlett looks and Down syndrome is part of that.

You see, if Scarlett didn’t have Down syndrome then she wouldn’t have those beautiful dark almond shaped eyes which seem to sparkle when she smiles. She has her Daddy’s eyes for sure, a quick look at Simons baby photos and you see it instantly. She has his nose too. And his hair. Or at least his hair before he lost it.

She has my Dads smile. A Jones smile. It’s warm and kind and pulls wide with thin lips. And because of her lower muscle tone, her little tongue pokes out, sometimes resting on her bottom lip when she’s tired. And when she’s feeling cheeky she tips her head to one side, smiles that beautiful smile with her tongue poking out and eyes sparkling and it just melts me.

She giggles when I kiss her neck. It’s a little shorter and wider than some other babies and it is as soft as velvet.

Scarlett always has her sleeves rolled up, her arms and legs that little bit shorter. It always makes me smile, she looks like she’s rolled them up to get down to some serious playing. I might have to learn to sew as she gets older, another skill to add to the many I have learnt through being Scarlett’s Mum.

The palms of her hands have the single crease, common in those with Down syndrome, and her fingers are a little shorter. She has beautiful hands, in those first few weeks I would marvel at how tiny and yet perfectly formed they are, tracing my finger across her single line.

Several years ago, a friend told me that he would be disappointed if people couldn’t tell he was gay. He felt it was an important part of who he is, a part of him he felt proud of, he didn’t want people to mistake him for a straight man because that isn’t who he is and why would he want to hide who he is? I think perhaps that’s how I feel about Scarlett. It’s not the 1960’s, homosexuality is no longer illegal and we do not hide people with Down syndrome away in institutions. We are out and we are proud. Disability is no longer something to feel uncomfortable about, we should talk about it, acknowledge it. It’s part of life. It is part of our life and it brings so many wonderful unexpected positive dimensions to our life, how could we possibly ever see it as a bad thing?

So you see, to me, Down syndrome is just one of the many things that make Scarlett who she is. I don’t see it as separate. She looks like Scarlett, like Simon, like me, like a little girl, like she has Down syndrome. They all sort of mix together to make Scarlett. Beautiful, perfect Scarlett.

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Not that different

Like many expectant parents we took part in anti-natal classes in preparation for the birth of our daughter and as I was new to the town I was keen to meet other new Mums. At the beginning of the first class we each had to talk about our pregnancy, due date and such as an icebreaker. Each expectant Mum took their turn and talked of how they coped with pregnancy and their excitement and nerves about the birth. I wasn’t sure what to say when it came to my turn. Should I tell them about the complications? That we knew there was a possibility that our baby might be born with some problems? Would that make everyone uncomfortable? Or should I just skip over that bit? I opted for a brief explanation without too much detail but to focus on how excited we too were about the arrival of our baby. I’m not sure how well I pulled that off, I was feeling pretty nervous at that point and we already knew there was a good chance Scarlett would have to be brought early.

We only made one class, I was induced a couple of days later due to complications and Scarlett was the first of the group to be born. We emailed the other couples a day or two after Scarlett’s arrival to announce her birth and also to tell them that she had Down syndrome. It was a difficult email to write. We didn’t really know these people but we were intending on meeting up with them once all the babies were born. We wanted to share our delight at the birth of our beautiful girl but felt it was best to say about the Down syndrome diagnosis by email rather than when we met up with them. The telling people bit in those early days was something we both found difficult – how to do it, what to say. It was difficult to choose the words that conveyed how we felt when we didn’t really know how we felt and how we felt seemed to change from hour to hour. We wanted people to know how very much in love with Scarlett we were, that although we were scared and overwhelmed we did not feel sad. We didn’t want people to feel sorry for us, we had lots of feelings but sorry wasn’t one of them.

Those first few weeks for us were tough as we tried to understand Scarlett’s diagnosis of Down syndrome and her heart condition. We felt like we had a mountain to climb but didn’t really have the right equipment or expertise to do it. We were so wrapped up in our own story it was difficult to comprehend that life was still going on outside our Down syndrome bubble. The first few times I met with the Mums from the anti-natal group was difficult for me. As they discussed the challenges they were facing in feeding and sleeping I wanted to scream “at least your baby doesn’t need open heart surgery”. As they talked over the pro’s and con’s of reusable v’s disposable nappies I wanted to shout “it doesn’t matter what nappies I use, Scarlett has Down syndrome”.

I persevered. I could have slunk away and mixed only with other Mums facing the same challenges as me, but something made me stay. And over the following weeks and months I learned something very important from this wonderful group of ladies. I do not have exclusive rights to worrying about my child. We all worry. We all watch closely for clues that our children are going to be alright, we all read crap on the internet we shouldn’t do and we all worry our babies are developing at an expected rate. We all had the same anxieties about leaving them with a sitter for the first time or starting them at nursery. We all have insecurities about if we are doing a good enough job (we are, all of us, we’re brilliant Mums) and we all struggle to manage our often complicated lives filled with work, relationships, housework, family, paying bills and all the other things that are part of life. We all worry, we are Mums and that’s what we do. And even though some of my worries and challenges are different, they are not any more significant or important than anyone else’s.

And I realise more and more that Scarlett isn’t always the one falling behind, she has strengths and weakness just like all the other babies. While she may be the last to crawl and she isn’t as sophisticated in her play yet, she is one of the best sleepers in the group – and a good night’s sleep cannot be underestimated. She is also a fantastic eater, willing to try almost anything despite her mother being a less than proficient cook. She gives the best cuddles in the world, she wraps her arms around tight and pushes her little nose into my neck in a way that makes me never want to let her go. Her speech is also coming along nicely, she babbles away and even understands a few words. And while the other babies are off exploring with their new crawling or walking skills, Scarlett spends her time focused on people and faces (as is quite common for babies with Down syndrome). I often hear that people with Down syndrome can be more emotionally developed than the rest of us, more in tune with others feelings and moods and so while she sits, less mobile than the others but still taking it all in, she is laying the foundation for important social skills later in life.

So in this last fifteen months, this wonderful, diverse, laugh out loud, kind and sensitive group of wonderful women have become some of the best friends I’ve ever had. We swop tips on feeding, weaning, recommend toys and online sources of lovely baby clothes. We talk about how motherhood has impacted our careers, relationships, bodies and social lives. We laugh at our poo stories and cry when it all get too much. We get drunk on girls nights out. We celebrate each and every success our babies achieve – as they learn to sit, crawl, walk and talk.   Yes, sometimes I feel a little pang that Scarlett is often the last to learn some of these skills, but that short little stab is far outweighed by how happy it makes me to see her playing with the other babies as just one of the “gang”. And I love those other babies, I feel happy when they reach another milestone and I look forward to seeing them grow and learn and spread their wings. The fact that this group of friends do not completely understand what it is to have a child with a disability, for me, is a positive thing. They remind me and allow me to focus on just being a Mum, having a family, doing all the things that everyone else does.

So as much as I hate to admit it because it isn’t very interesting or very glamorous …. It turns out we’re really not that different. We’re pretty ordinary, my wonderful family and I. And I might not have realised that quite so easily if it wasn’t for my awesome Mummy friends.

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The very, very, beginning

Scarlett was born at ten past ten in the morning by caesarean section three and a half weeks early.   The moment I saw her, as they lifted her up over the sheet and I reached out and touched her tiny leg, I knew I was in in trouble. Crazy, mad, deep in love, trouble.

They took her to the other side of the room to clean and weigh her and Simon went with her so she wasn’t on her own. She came back to me wrapped in a blanket with a little pink hat on. I felt like I already knew her, we’d already had such a journey together. I felt like I’d seen her face a million times before. She was perfect.

It had been a difficult pregnancy. They call it morning sickness but I call it all bloody day, all bloody night sickness. I struggled to cope with anything that didn’t involve lying on the sofa eating crisps. I had previously had an ectopic pregnancy and so spent the first few weeks terrified, but a six and then twelve week scan allayed any fears I had. We chose not to have the nuchal translucency (NT) screening offered to all pregnant woman at twelve weeks which gives a probability score of the likelihood the baby will have Down syndrome. For Simon the decision was an instinctive one, he simply didn’t want or need to have it.   The decision wasn’t so straight forward for me; I researched the screening process and the results it gave, discussed it with friends and family and subjected Simon to endless scenarios of “how would we feel about this result?”, “how would we feel about that result?”. For me, in the end, it came down to this: the NT screening does not give a definitive diagnosis of Down syndrome, it simply gives a probability. We may have been given a 1:1,000,000 or a 1:70 or a 1:4 but it would never give us an actual answer. So for an Accountant who prefers to deal in absolutes, the test seemed meaningless to me.

With hindsight I went to our twenty week scan naively. I was excited to see our baby again, we were pretty sure she was a girl and had been referring to her as “her” for weeks, but I was keen to know for sure…I wanted to start shopping! It didn’t really occur to me that there would be a problem, that it would be anything other than another lovely chance to see our girl. But this scan felt different, I watched the sonographers face rather than the screen. Something was wrong.

Ventricularmegaly. It took me hours of practice to learn how to pronounce this. Ven-tric-ular-meg-aly. It felt important to be able to correctly say it. It basically means big ventricles. The little spaces in Scarlett’s brain containing fluid which should measure 10mm measured 11.5mm; classified as ‘mild ventricularmegaly’. The Doctor explained that we would need regular scans to check if the ‘vents’ were getting bigger and putting pressure on the brain and that while in most cases big vents didn’t mean anything in some cases it could be an indicator of a disability or learning delay.   I was devastated. I cried for days, I could barely get out of bed. And then I started researching. I read everything I could find on the condition and learned that there is a possible, but unproven, link to Down syndrome. Perhaps it was instinct, I don’t know, but I had a feeling and even discussed this possibility with a Paediatric Doctor – my “feeling” without a clear diagnosis, however, was not considered enough to go on so my concern was quickly dismissed. We were offered an amniocentesis, where a needle is inserted into the tummy to test for chromosomal conditions, but we declined. The idea of a giant belly needle (I’m sure the reality was nothing like this) terrified me, as did the risk of miscarriage at 1%.

Scarlett’s early arrival was not linked to the brain condition, but because we were having so many scans to monitor this, another issue was picked up at around 32 weeks that the umbilical cord was not working efficiently. We were told that we would now need to have weekly scans and that I should keep my hospital bag with me as they would be making a decision each week if Scarlett was safer “in or out”.

I panicked. My first thought was that we didn’t have a pram. Or cot sheets. And the nursery wasn’t finished. And that I had absolutely no idea how to look after a baby and I thought I had a few more weeks to read the baby books and suddenly I might only have a few more days…. How do you change a nappy?!?  Our trip to Mothercare that Saturday was like a mad episode of Supermarket Sweep, I was frantically grabbing stuff off shelves and throwing them into the basket shouting at the sales assistant “the baby might be coming next week!”.  We chose our pram because, well, it had four wheels and space for a baby and would probably be ok … that night Simon showed me how to change a nappy with our newly bought tiny baby nappies and a teddy bear. I felt a little calmer. If she came early, we were ready. Kind of.

Our final scan was a Monday. It was time. Scarlett would be safer out now as the cord was not working well enough. Time to choose; a caesarean section later that day or be induced. The choice was mine. With hindsight, knowing what I know now, I should have opted for the C Section. But I still had that romantic idealistic notion that all first time Mothers have of how I wanted my birth to be. I had been practicing my breathing and had my hypno-birthing CD in my bag. My birthing ball was in the car and I had spent several hour working on my birth plan. My birth would be natural, with my choice of music playing in the background. Simon would help with the delivery and Scarlett would be immediately placed on my chest for skin to skin contact and feeding. It would be beautiful and my hair and makeup would be in place for the photos afterwards….

Four days, three rounds of induction and very brutal procedure from a robust midwife later and I was walking into theatre with Simon for a C Section. It wasn’t the birth that I had planned but it was beautiful. Simon was with me, holding my hand, reassuring me and making me laugh. The Doctor who had carried out all our scans and knew the journey we had been on the last few months delivered Scarlett. It was calm, relaxed and we have some wonderful photos and memories of those first precious minutes with Scarlett.

I will always be grateful for how the team in the room behaved. While they must have all known immediately that Scarlett had Down syndrome, not a word was said and the mood was happy and excited. I have heard terrible stories of Mothers being given the diagnosis while still on the delivery table or the atmosphere being subdued or sad. But our team celebrated the birth of our beautiful daughter with us, they congratulated us, took pictures and allowed us to enjoy the moment.

The events of the rest of the day are hazy in my mind but there are two things I remember very clearly. First that when Scarlett was born it did not enter my head that she may have Down syndrome or any condition or disability for that matter. Which is strange given the pregnancy that I had just had, the scans, the worry, the daily discussions Simon and I had about how we felt about our baby potentially being born with a disability. The moment I saw her I just forgot it all. She was here and she was perfect. My only instinct was to feed her and keep her close. I also remember being given the diagnosis later that day. The Doctor who talked to us was wonderful and did her very best to follow the “tell it right” protocol. She first asked who we thought Scarlett looked like. And without hesitation I said “oh she looks exactly like her Dad when he was a baby! Simon’s a quarter Chinese and I can see this in Scarlett – she has beautiful almond eyes and a broad bridge to her nose”. I was absolutely right, of course, Scarlett is very like her Daddy especially around the eyes and nose. But to the Doctor, I suppose, I was describing Scarlett’s Down syndrome features and just not realising it. The Doctor gently guided us toward understanding that she thought Scarlett may have Down syndrome, she explained about the single crease across Scarlett’s palm and smaller low set ears. I asked her if she was ever wrong and she answered that she would be very surprised if she was but that they would confirm with a blood test. She then left us to be alone for a while.

We had a little cry for a minute or so, we hugged and then we looked at our daughter and knew very quickly that while this was a lot to take in and there would certainly be some challenges ahead and, yes, we were pretty scared, we could handle this. We loved her. We loved each other. Scarlett was perfect and whatever the future may hold, our immediate priority was to feed her, keep her warm and love her. And that’s what we did.

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