Children in Need

Children in Need day is almost upon us once more.  The BBC do a wonderful job of raising lots of money for “disadvantaged children” by inviting support from the public. It’s a positive, worthy cause.

So why does it make me feel so uncomfortable?

Much of the money raised goes toward supporting children with disabilities.  Children like Scarlett.  The money is used to provide equipment, services and support for families.  And of course I’m delighted that help is available.  We haven’t needed to access support from a charity yet, but I’m glad to know that safety net is there if we ever do.  I’m glad to know there are so many kind hearted people willing to make a donation.

So why does it make me feel so uncomfortable?

As an activist and campaigner I often feel at war with public perception.  I work hard to dispel so many of the myths and misconceptions that surround individuals with Down syndrome.  I push back hard at a medical profession who often present a diagnosis of Down syndrome as the worst possible outcome.  I strive for families to be provided with balanced up to date information instead of being pushed toward a termination.

As a mother I cringe at the thought that anyone may look at my family and feel pity.  That they may look at my daughter and think “what a shame”.    I rarely share the tough days with anyone outside my trusted inner circle because I fear they might think it might have been better if she wasn’t here.  Having kids is bloody hard work, with or without Down syndrome.  But while most mums get to have a moan about how tough it all is, I feel compelled to stay silent.

So why does Children in Need day make me feel so uncomfortable?

It’s very simple.  To get the donations you have to tell a few sob stories.  The British public won’t part with their hard earned cash for nothing.  In return they expect an evenings entertainment. They want to sit on their sofa with a cuppa in hand feeling sorry for all the poor disadvantaged children.  They want moving background music and some inspirational stories.  They want to feel good about themselves for picking up the phone and making that donation.  They want to feel lucky it’s someone else and not them.

Next week Children in Need will put us back a step.  It will put firmly into the publics mind that children with disabilities are “disadvantaged” and rely on support from charities.  They will use the faces of children with Down syndrome to promote the cause and they will further the fear that many feel about the condition.

So I ask this.  Make a donation.  This is a good cause and an over stretched NHS and welfare service means that more and more families are relying on charities.

So make a donation, as much as you can afford.  But do it with love and not pity.  Do it knowing these families, families like mine love their children just as much as you love yours.  Do it knowing that I wouldn’t change my girl for the world.  

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I finished work at 10.30 last night.  I expect it will be the same again tonight.

I’ve spent half of today in a hospital waiting room for Scarlett’s eye clinic appointment.  This is the fourth medical appointment we have attended this month.  I have also attended a two hour “team around the child” meeting,  a 45 minutes preschool review meeting, two visits to the optician for replacement glasses after Scarlett snapped the arm off.

I have a pile of “Scarlett admin” to tackle later.  Forms to fill in for her preschool attendance next academic year, speech therapy forms to assess her language skills, emails from her Occupational Therapist, a text message from her Hearing Support specialist.  New appointment letters for next month to enter into my diary and file away…… I’ll need to start a new folder, the current one is full but I haven’t the time to buy a new one.  Or to organise the various sections:  heart, hearing, ENT, speech, paediatrics, physio and so on.

Meanwhile the house work piles up…. I haven’t seen my iron in months (do we have one?)…. it’ll be pizza tonight (again) and as soon as the kids are in bed I’ll turn on my laptop on and try to squeeze a days worth of client work into one evening.

This is the side of parenting a child with additional needs that goes unseen.  When people see Scarlett they often assume my life is hard…. that she is hard … that her diagnosis of Down syndrome is a tragedy that I wish hadn’t happened.  They think she is less.  Imperfect.

But Scarlett isn’t the hard bit… in fact as a human being she is pretty bloomin awesome.  She’s kind and funny and, for a three year old, surprisingly reasonable.  She goes to bed when asked, usually eats all her dinner & always has a cuddle for her Mummy.  As kids go, I definitely got a diamond & I wouldn’t change a single hair on her head.

Talking to friends, I’ve learned that most Mums with young families are overstretched.  Feel like they don’t have enough hours in the day, days in the week.  Or enough time to themselves.   And I’m not for a moment suggesting that their struggles are not real or that I have it harder…. but there are some extras.  Some additional tasks I must find additional time for when there are not additional hours in the day available.  And I don’t see that changing any time soon.

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We were having a giggle in Tesco.  Scarlett sitting in the trolley mischievously hiding my shopping list behind her back and laughing like it was the funniest thing ever.  Licking the vegetables & grinning at people as we wheeled past.

Half way round the isles I became aware of people looking at us.  Not with unkindness but not smiling either.  They were watching us, Scarlett.

And I realised with a jolt it was the noises Scarlett was making.  She shouts a lot.  Not words, she hasn’t learned to talk yet, but loud sudden sounds.  One of her noises sounds a bit like Chewbacca from Star Wars.  Sometimes the noises are like she’s singing out of tune or telling me off.

Ive never been particularly aware of it before, she’s always been a noisy kid.  As baby she’d shout, then she babbled, as she’s got older the noises she makes have changed and progressed.  That’s just what Scarlett does.  That’s what she sounds like. I love the sound of her voice.

But today, with a sudden jolt I realised that most 3 year olds don’t make these noises.  That her shouts were causing people to look.  And what they were seeing was a child with a disability…. because people with learning disabilities often do make these unusual noises.   And people stare at them.  They were staring at us.

As I write this I’m not even sure I’ll publish it… I’m not sure how I feel so I’m not sure how to end the post.  I’m not upset.  I’m not offended that people were looking and I certainly won’t be trying to make Scarlett stop doing it.  I like her noises and so does she.

But it did make me feel singled out.    Different.  Were people looking at us with pity? Did they want her to be quiet? Did they expect me to quieten her?  Were they just curious as to why she shouts? Did they feel unable to approach us? Could they see my little girl or did they just see Down syndrome?

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Sensory processing

When I get into bed at night I like wrap the duvet tight around and under me, curl up into a ball and rhythmically rub my feet together.  It helps me to feel safe, relax and unwind before drifting off to sleep.  I love the smell of Jasmine because it reminds me of childhood holidays and I hate the sound of polystyrene breaking.  The feel of wet cling film makes me shudder as does the texture of kidney beans in my mouth.  I love to have my feet rubbed, and my hair brushed and my nose stroked but I have very sensitive thighs and even the tiniest amount of pressure on them feels unbearable.  I love to be in a group of people but I find a noisy crowd overwhelming, especially if there is also loud music or confusion.  But I love to listen to loud music and sing at the top of my voice when no one can hear me.

Katie likes me to hold her in my arms and spin round and round and round.  She likes to run her fingers over rough surfaces but doesn’t like the touch of scrambled eggs.  Hollie doesn’t like loud noises and covers her ears when there is loud music or fireworks.  And Simon will always feel better at the end of a stressful day with a shoulder rub.

We are all sensory beings.  We all use our senses to understand the world around us and our place in it.  We all need sensory input; sounds, smells, taste, touch and sight.  Some of that sensory input will make us feel good and we’ll seek it out.  Some will make us feel bad and we’ll do our best to avoid it.

Scarlett has Sensory Processing Disorder (SPD).  This means that the way her body and mind understands sensory input can sometimes be a little different to most people.

Scarlett likes to have pressure on her face and head, she feels that she needs this sensory input and will sometimes try to deliberately bump heads in order to get the feeling.  To keep her from hurting herself or anyone else we find better ways of providing her with that feeling.  Sometimes we press our chins together, it makes us laugh and feels good.  Sometimes I squish Scarlett’s head using the palms of my hands as a sort of massage – never hard enough to hurt her, just firm enough for her to get the feeling she needs.

Sometimes she needs a bit more, a full body squish.  We lie on the floor and I wrap my arms and sometimes my legs around her tight and we have a little wrestle and a cuddle and it sort of re-sets her,  calms her down.  In the same way Simon’s shoulder rubs do for him.  I think this need for pressure on her body is why she likes to cuddle so much.

I also think this is why she finds bath time so challenging.  We have to close the windows so the neighbours can’t hear her screaming and it can be very upsetting for all of us.  I think that for someone who needs a lot of pressure on her body, being naked and so not even having the feeling of clothes while in a large container with only water lightly sloshing round is very uncomfortable.  I often bath with her, I hold her tight while I wash her and that seems to help.

Scarlett likes to make a noise in her throat which sounds a bit like Chewbacca from Star Wars.  It can be quite loud and if she does this in public people sometimes stare at us.  I’m still learning what Sensory Processing means for Scarlett but as best as I can tell she is seeking that feeling in her throat and I think it settles her if she is feeling a little overwhelmed.  We try to distract her by encouraging her to make different noises “mamama” “babababa” but we never try to make her stop because this is something that she feels she needs.

Sensory overload can make it difficult for Scarlett to enjoy or join in at a party.  She has been invited to her friends birthday disco party in a couple of weeks.  There will be loud music and lots of children running around.  There will be sounds, sights, tastes, smells and touches.  There will probably be games that she doesn’t understand.  There are lots of ways I will help Scarlett cope with this – we will have body and head squishes before we go, I will stay close to her when we first arrive so that she feels secure and I will remove her hearing aid so the noise isn’t too overwhelming.  Sometimes she dives straight into situations like this and I’m left wondering what I was worried about.  Sometimes she needs lots of support.

I’m still learning about this, its a big and interesting subject.  No two people are impacted by their sensory experiences in the same way and different strategies work for different kids… but understanding is an important step and this is why I thought I’d share a little of our experience.

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where do they all come from?

A couple of years ago a friend made a “joke” on social media featuring the residents of a mental health Hospital including derogatory phrases such as “Window Licker”.

I took exception, I spoke out and the backlash I received made my head spin.

You see the focus was quickly shifted away from the “joke” and on to my own behaviour. Immediately I was accused of misunderstanding, being too sensitive and reacting in the wrong way. I should have realised that my friend didn’t mean it “that way” and I should have handled the situation better because her feelings were far more important than my own and it was for me to take the higher ground. It didn’t matter that I was already having a difficult time in my personal life (I had just had two consecutive miscarriages), the only thing that mattered was her feelings. The person who made the joke.
It was my fault. I was to blame.

A mutual friend quickly followed; how could I have behaved so badly? How dare I treat our friend so unkindly, I should have understood she didn’t mean it “that way”, I should have handled it better. It was my fault. I was to blame.

This has happened several times over the last few years, each time the same pattern is followed. Someone makes an unkind, thoughtless or downright ridiculous remark about disability and I have a choice of whether to say nothing and swallow it down or speak up.

If I speak up it is the end of the friendship no matter how I handle it. Each and every time I am to blame because I have misunderstood, been too sensitive and not handled it the right way.

But there is no right way to handle it. If a derogatory comment is made in public and I challenge it there and then I am to blame because I have caused embarrassment to the person who made the remark – because remember, it’s me who has misunderstood.

And if I challenge in private, I am still to blame because, you know, I have misunderstood and they disappear from my life (& quietly take their friends with them).

I’ve thought a lot about why this happens.

Blame is a key feature of disability discrimination, I encounter it regularly but feel like it’s something that isn’t very often discussed.

After I took part in Sally Phillips documentary last year the feedback from certain Daily Mail readers was that my children should not be entitled to access NHS services because I chose not to have prenatal testing. It was my fault Scarlett was here, so we should not have the same rights and entitlements as everyone else.

I have been asked by complete strangers “didn’t you have the test then?”. A very different question than “did you have the test?” with a clear suggestion that if I had Scarlett wouldn’t be here. It’s my fault. I am to blame.

Remarks made in every day conversation can range from very clear discriminatory language such words like “retard” or “mong”.

Sometimes people will mock others, suggesting stupidity by imitating a person with a learning disability by flapping their arms & pushing their tongue under their bottom lip. It’s funny, right?

Sometimes it’s more subtle. Prejudice disguised within a compliment. I am often informed how loving or always happy “they” are. At first this sounds like a nice thing to say. But the “they” strips my daughter of her individuality and the always happy or loving creates the impression of a person who does not feel the same range of emotions as you and I. It dehumanises her.

Recently, during a conversation about a work program for young adults with learning disabilities, I was told how amazing it was … but was asked “where do they all come from?” … “I don’t know where they all come from!”…. Perhaps I should have responded “their homes”, but in these situations my brain swirls around as I try to make sense of what is being said and I miss the moment. Instead I went home and cried.

For three years I have tried to find the correct way to deal with these interactions. Should I say nothing, let it pass, ignore the sick feeling in my stomach and the knowledge that I have let my daughter down?

Or say something, knowing that however gently I approach the matter, it will end the same – that it will be me who is deemed to be In the wrong, at fault. To blame.

But I am beginning to realise this is not my responsibility. It is not for me to learn how to manage your prejudices. My reaction, how I chose to respond, even if that response is to kick and scream and cry, is irrelevant because if you didn’t hold these beliefs I wouldn’t need to respond at all.

It takes courage to self reflect and effort to question your own views. And it is not my job to guide you through you this, it is yours. To simply blame me for misunderstanding you is lazy. Its the easy option, it is a quick & simple way of enabling yourself to continue through life without putting any effort in to considering how your view of the world could improve. This is your responsibility, not mine. I will gladly provide you with reading material or answer questions if you ask but, and I need to be very clear on this, this is on you.

As time goes on many parents of children with additional needs find that their social circle is increasingly and even exclusively other parents of children with additional needs. I swore this wouldn’t be the case for me, that we would stand our ground in the mainstream world….

But I now see why this happens. It’s easier. They get it. I don’t have to explain this stuff. And neither do they.

Over the last year I have felt my relationships shift. The children are forming friendships that Scarlett is not included in because she doesn’t understand how to participate. And I am not included in the adult friendships because I don’t get them. I can’t complain with the other mums about my toddler talking back because my toddler doesn’t talk. I find their problems silly and trivial compared to the challenges we face…… and I am always always guardedly waiting for the next insensitive remark that I have to silently swallow down. We get invited less and I make other plans.

So bit by bit my friendships in the SEN world strengthen and those in the mainstream world weaken until eventually we will disappear from your view entirely. Which I’m actually fine with, the friends I have made through Scarlett are truly spectacular.

But this is probably why, when confronted by a group of adults with learning disabilities just getting on and doing their jobs the question “where do they all come from?” is asked.

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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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