Who Is She?

Our story

So here’s the ‘boring’ bit, our story. When I started the blog I kind of assumed, that the only people to read it, would be my friends who already knew me (and who kindly humour my rants). I see that’s actually not the case – so “Hi, people I don’t know”

What’s to tell? Ummm…Evie is 6 years old. Currently dual placement arrangement at our local mainstream and special schools. She’s incredibly funny, grumpy, chocolate and cake obsessed and even more stubborn than her dad (if that is possible).

We found out that Evie had Down’s syndrome the day after she was born. Her pregnancy was unremarkable. Textbook even. Arrived on her due date weighing 8lb 1oz. We had no clue. No idea that there was anything different. To us we had just been given the most beautiful daughter. We had become a family of 3. I have never felt such an overwhelming rush of love as I did that day. The best feeling ever.

The following day came a suggestion that all was not as we thought. That something was ‘wrong’ with our perfect baby. We were rushed for urgent testing – heart scans and bloods. All the while the world was still turning, yet our’s had stopped. I went straight into denial mode. This couldn’t be happening to us. This happened to other people. All I could see when I gazed at her, was a mini me. I saw no ‘difference’. After some days the diagnosis was confirmed and we were sent home. No advice. No support. No leaflets even. Just a list of appointments to attend.

We were in shock. Evie was beautiful. We were so in love with her, yet we feared what ‘others’ would think. That first night at home we began to research. We sent emails to people to tell them our news. It felt like the coward’s way. To hide behind a keyboard – emotionally protecting ourselves (yes, I am blogging and I do see the irony!).

Those emails began, “This is without doubt the hardest email that we’ve ever had to write.” I find it terribly sad that we wrote that. We had no idea of the absolute joy that Evie would bring. It’s not that we didn’t adore her but we were frightened of what the future would hold for her and for us. She has saved us in so many ways.

Having your child diagnosed with a disability is like a grieving process….bear with me, I’m not being flippant. You go through the stages of grief; denial, anger and eventual acceptance. You grieve for the child that you imagined. The blonde haired, green eyed girl (note Evie has brown hair and deep brown eyes) who would be an avid reader and love sports. I realised after a time, that no child is ever as we imagine. With a disability or not. They are themselves and will never be that picture perfect version that we conjure up.

I didn’t see myself as going through a grieving process. I have only recognised it as such, after going through the grieving process for our son Joshua. He was stillborn when Evie was 3 years old. Evie was our saviour then. She gave us a reason to live, to get up in the morning, to laugh. And she does like to laugh (and growl, shout and talk A LOT!). I think it takes a long time to come to terms with a diagnosis, whatever that may be.

Sometimes it hits you, perhaps when you realise that all of their peers are talking and she can only just sit up. When her peers are practising beautiful handwriting and she can barely hold a pencil. Just because I recognise the differences between Evie and her peers, doesn’t mean that I resent them or her. She’s just herself. She does things that they can’t do. She is the most flexible child I have ever seen. She gives far better hugs than anyone I have ever known. She can see into your very soul and pick up on tiny nuances, that you didn’t even realise were there.

But when she does achieve, good grief….it’s such a rush!! I saw her this week, swim two strokes independently (no floats!). No big thing you’re thinking? Hell yes it is! She actually moved her arms willingly, saying “stretch and pull, stretch and pull”. I had to restrain myself from jumping up and down and cheering…..we did high 5 later!

Down’s Syndrome Awareness Week and World Down’s Syndrome Day is all about celebrating people with Down’s syndrome and their achievements. Those achievements don’t have to be massive. It’s about the world accepting people with Down’s Syndrome, not pitying, side-lining or tolerating them but fully including them. That doesn’t mean just at school but in all walks of life. We don’t all have to be the best at everything.

Sometimes the smallest steps, mean the most. Join us on Saturday, wear your funkiest and brightest socks. Get people talking about WDSD15! Oh and show me your socks too! Can’t wait to see the sock selfies!

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Battling The System

Many moons ago I started to write a post about the introduction of the Education and Health Care Plan system.

It wasn’t a bad post, I just wasn’t entirely comfortable writing about something that I wasn’t qualified in. I didn’t want to give the wrong advice. For someone to rely on what I said as being totally accurate. I felt that I owed my fellow SEN parents that. So I chose to not post it.

I see and have read a lot of information about the new SEN Code of Practice, EHCPs and what it means. A lot of what I read is terribly complicated and detailed.

As a former solicitor I’m used to reading legal documents, regulations, acts and codes. Even for me some of the things that have been shared to help are somewhat heavy to digest, particularly when these damn emotions get in my way. When you’re desperately seeking for an answer to a question, you get washed over with information which doesn’t answer your question. You get lost.

I undertook an IPSEA course about the new SEN Code and this helped me immensely. I’d read the Act and Code before and I thought I knew what it meant. Now I know that I’m right in my understanding. Knowledge truly is power.

When professionals tell you things, you assume that firstly they are telling the truth, secondly they wouldn’t mislead you and lastly that they actually know what they’re talking about. Trust me on many occasions they don’t. (I know that you’re shocked!)

Evie has had her Statement of Educational Needs in place for many years now but it was time (according to her local authority) for transition to the new EHCP. So in January we had her transition meeting. At these meetings all professionals involved in Evie’s care are invited. Her SENCO, her head teacher, her 1:1, her teachers, her Speech and Language Therapist (SALT), a representative from the Local Authority and her Occupational Therapist.

Everyone prepares reports prior to these meetings, views of the child and parents are sought too.

Her OT didn’t attend. Didn’t file a report either.

After this meeting Evie’s paperwork went missing at the Local Authority. From what I can gather it just disappeared. We heard nothing. Her fab school SENCO chased up the LA regularly. I knew we were unlikely to hit the timescales denoted in the EHCP provision but I could live with that…provided that it was in place by the time Evie started school again in September. Come June and we had no news so we (her SENCO and I chased again). I impressed on the LA the importance of this document being in place for start of the school year. It transpires that she had a change of Local Authority Officer, yet no one had told us.

New school year is the time when Evie struggles. This year there are big changes ahead…no longer an infant but a junior. Different teacher, different school entrance, even a different and larger, easy to hide in (and potentially escape from) playground. From past experience we have learnt that Evie can struggle with change. She becomes anxious and her anxiety has physical manifestations. This is awful. For her. For us. For her teachers. So yes I am tense in the build up to the new school year.

We wanted to minimise that risk. We wanted to be prepared should our worst fears happen. Everyone who attended that meeting in January remains on high alert for the possibility of Evie struggling.

What I didn’t want was to have paperwork outstanding. I wanted to have nothing hanging over our heads…that come September we would be ready.

So in July I finally receive the draft EHCP. A few minor amendments needed and one specific requirement to specifically include the OT provision. Evie’s SALT provision is so detailed in her EHCP. Her OT provision is bland to say the least. To be honest it’s a bit comparable to the support she’s had to date (bar one lovely awesome OT).

I sent back my requests for amendments and was surprised to receive exactly the same copy a few weeks later still in draft form. It was almost as though the LA hadn’t realised that they had sent it before. When I spoke to them it turns out that they didn’t know that they had sent it and hadn’t read my response.

After a touch of chasing around I then discover that the OT has never compiled a report despite specifically being asked to do so back in January. So we have to wait.

Today I loudly complained to the OT department – I wasn’t prepared to wait for the promised phone call (as they rarely happen). And as a result have a very quick appointment for an assessment and hopefully (!) this will be resolved and signed off soon.

When I think about all of this I remember that I’ve actually asked on social media before “what does an OT actually do?” as I’m damned if I know. I don’t know what provision they’re supposed to have in place. I don’t know what is reasonable to expect. I feel that as Evie is relatively able in some respects that she is abandoned. Her fine motor skills aren’t great. Her gross motor requires work. We don’t seem to have any practical support. Yes here I am feeling as though I’m whinging again. Whinging because I want to be able to help Evie, to make sure that her school have the support that they want to be able to help her too. All we want is advice…

In all of this what really concerns me is what about the children who don’t have an irritating parent like me? What about those whose parents are so broken by the system that they give up? Who looks after those families? Who protects them and helps them? There must be thousands of children without support, or parents accepting the support that the professionals offer. Accepting it because they trust the professionals to help them…when in reality it’s cost cutting or overwork or even on occasion shoddy care. That means that these children don’t get the support that they not only need but they are actually legally entitled to.

As an aside a new report came out today highlighting the lack of support for those families with children with disabilities in holiday time. This came as no surprise to me or any other SEN parent I’m sure.

Many are currently at breaking point. There is such little respite around, 1:1 specialised child care is more often than not prohibitively expensive. And families are left floundering, exhausted, feeling abandoned by the system.

I for one am tired of fighting the system. And I’m worried about what happens to others. I’m so fed up of it feeling as though it’s a them and us situation. These children have a right to be protected and to have the best support reasonably made available to them and their Carers and educators. The continual battle is genuinely exhausting and massively irritating.

Too many of my SEN parent friends are struggling. Awesome parents who are battling the system for transport, Physio, respite, education, even medicine is cheapened so our children have to struggle instead.

I will battle on. I do love a good row, I just wish it wasn’t about my daughter’s support package. I would rather argue about politics any day of the week, than have a heart wrenching battle about asking for help for her. This wasn’t an easy blog post to write. I’ve debated about not being as blunt and not as detailed about what’s happened. I’ve debated about not posting this. Just writing it as a cathartic exercise.

But this is how it is. I want to always be honest and accurate. None of this is our fault and it certainly will never be Evie’s. It’s not her school’s fault. They have supported us through this. They are I’m sure as frustrated as we are. Her SALT provision has always been exemplary. We are so so fortunate in many ways.

And this isn’t even a bad case…some parents have a diabolical time. The stress that this type of thing places on parents is unforgivable. If you’re struggling with the system, know that you aren’t alone. Reach out for help…other parents understand and we try to help each other. Without the support network online of SEN parents and charities such as IPSEA, then we would be truly lost.

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Promises – Promises

So the end of term has been and gone.

We’re firmly in the middle of school holidays. Not that we’ve seen much of that. Evie has had a couple of horrid infections that she only now seems able to shake off with stronger medicine. I confess that I have been worried about her, for two weeks she’s barely eaten, had crazily high temps of 40 degrees, sickness and lethargy. Evie even refused chocolate cake…that isn’t Evie.

That means that everything else has gone on hold, housework, paperwork (the draft education and health care plan is waving at me from the corner!) and let’s not talk about the state of the garden. Needs must and I can catch up when she’s all better. Some things are far more important.

I had planned at the start of summer to do an hour of work with each of the girls every day. Whether it be reading or writing, but something structured. That hasn’t happened until today.

Evie’s lovely 1:1 had popped over her school books at the end of term. Today I’ve managed to read through them with her, her maths and English, the paintings that she’s done.

I left the Religious Education one until last. I shall now tell you a secret. At high school I managed to accumulate just under 100% in my RE tests. Well…100% if you added up three years worth of exams together. Ok ok – what I mean is that I averaged 33% in each exam.

I confess that I didn’t study much for RE. I didn’t pay much attention in class to the abject horror of my mum, a former Sunday School teacher. I preferred the more academic subjects, Mathematics, English, French, German, Latin, Chemistry (but not Physics nor Biology!). So in terms of studying for RE exams, well umm I didn’t study much.

So today old habits clearly die hard and I read Evie’s RE book last. I’m glad that I did. This book is so utterly delightful that I have cried tears of joy. Of love.

Evie loves me. It’s throughout this book. Now I’ve always known that she loves me, as much as I love her; but when you see it written down in this form well you’ll hopefully see what I mean and why I’ve cried…

So in her book it explains that her class have been discussing God’s Promise to Noah. That Noah was obedient, trusted his God and listened to what he asked him to do. Her class discussed the importance of making and keeping promises.

Evie drew a picture of a rainbow…rather wonky but perfect in every way.

And underneath –

My promise to Mum.

I promise to be really good.

Why is your promise important to you?

It will make Mum happy.”

Yes my little one it will. But you already make me happy. You are already good to your very core.

These little words made me cry. She was so proud as she showed me her work. Such power in such a few words. Her love for me and pride in her work shone through as she sat next to me. It’s not what she promised so much, it’s more that Evie knew what it meant to me.

I then showed Evie her Bible given to her at her Christening. I confess it was the first time that I’ve ever done so. As I opened it a note fell out, a note written by my Mum for Evie on her Christening Day. My mum died nearly 5 years ago (where did that time go) and it’s been a while since I’ve seen her handwriting. Seeing her script in such a place, when discussing such things made this much more special. I’m not a major believer in God but my Mum was.
My promise to you Evie is to give you space to learn, room to grow, freedom to live and love.
I will stand by your side for as long as you need me, I will teach and guide you, always listen to you and continue to learn from you.

I promise you all of this little one.

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Baby Elephants

When I’m tired, I find that I blog. Perhaps as a way of trying to rationalise the sporadic thoughts that bounce round my head when sleep deprivation peaks.

This time it’s not Evie’s sleep issues that have deprived me…moreover her little sister with her uncontrollably high temperatures, vomiting and wheezing. Asthma stinks.

My mum used to call me a baby elephant…I stomped across the floor, crashing into things. I still do to be honest. Elephants in the room…

It’s amazing what little things you forget and what can trigger memories.

I’ve just received an email asking for specific details of our birth experience with Evie…it’s the dead of night and suddenly I’m back there, reliving her birth. No sugar coating, no glossiness. No trying to protect the amazing NHS staff (who are truly amazing but on this occasion didn’t do what they should have).

I have forgotten so much of what happened then. When I’ve talked about Evie’s birth before, I’ve brushed aside or not alluded to some of the things that happened. I haven’t wanted to consider fully what could have been done better…because that would mean facing my own failings and no one likes doing that.

Evie was born on her due date. A text book pregnancy. I was excited for her birth, we were as prepared as we could ever be. Ha!! More fool us. The thing that I’ve learnt most in this life since her birth, is that you can never be prepared for what life throws at you. For a control freak such as I, that’s a bloody hard lesson to learn.

I’ve said before that my labour with Evie was relatively uncomplicated. In truth the kiwi-ventouse delivery stung more than a little and a third degree tear meant a couple of hours in theatre immediately after her birth. So perhaps not the most straightforward of deliveries, but definitely not the worst.

What happened was that Evie got stuck. She couldn’t help herself down the birth canal…a doctor later told me (only about 12 months later) that this was probably due to her flexibility and hypotonia.

When she was born her head was swollen from the ventouse. Her neck was thickened. I had never seen anything as beautiful as she. She was perfect in every way…true love at first sight.

My husband had noted her swollen, thickened neck and mentioned it to me. In the haze of child birth and the rush of love for this little one, I could see nothing more than a touch of swelling from her delivery. I cooed over her perfectly manicured fingers and toes, her TinTin-esque tuft of hair. I genuinely have never been as happy as I was in that moment.

I was then rushed down to theatre for emergency repairs

I had to leave Evie with her Daddy and my Mum. They got to enjoy those first couple of hours with her.

When I was in theatre, I had a particularly affable anaesthetist who went out of his way to entertain me. In hindsight I know now that they all suspected that Evie had Down’s syndrome. A midwife present at her birth, told me days later that she knew as soon as she saw her. I realise that the staff were patching me up physically and emotionally. I’ll forever be grateful to that lovely man who entertained me through one of the least glamorous moments of my life.

At this point we had no idea that Evie had Down’s syndrome. She was born in the early afternoon on a late summer’s day. It was hot. I was desperate to go home and to start our lives as a family but knew I had to stay in overnight following my operation.

That night Rob went home and I remember being terrified that I was left in charge of this beautiful baby. I had no understanding of babies despite my NCT classes. I’d never been around babies or even children for that matter. I remember trying to breastfeed her with the “help” of a midwife. By this time Evie was several hours old. I was man handled. No guidance…no dignity or care. All I can recall is being told that she had a good suckle and that was it. I was told to try again in the morning.

Then around 10pm things went a bit odd. The curtains were hurriedly drawn around me and not reopened…Evie had a dusky episode. She in essence went cold and blue. They rushed and brought a heated pad, and extra blankets…but nothing else was said. No one explained why this had happened. Yet they all must have known or suspected.

At the time I thought it was perfectly normal. I knew no different. I just saw my beautiful baby. A haze of ignorance…and love.

The following morning I got myself up and dressed. I wanted to take Evie home. Rob arrived and we sat waiting to be told we could go. A doctor arrived, he began to minutely examine Evie, curtains still drawn.

He looked at her neck, her hands, her ears, toes and eyes…

We looked at each other uncomprehending and began to fear what was happening. There was no chat that I can remember. No explanations, just silence.

We were then ushered to a private room. Rob was beginning to panic, I went straight into denial…”everything is OK” I insisted. The doctor then began to show us what he suspected and why.

Two words…

Down’s syndrome

And just like that the world stopped turning.

How can two words have such immediately negative connotations?

The doctor explained the issues…potential heart and bowel conditions, eyesight problems, learning difficulties…no good things…no reassurance.

I knew nothing about DS then. Quite frankly I was totally ignorant about the condition. I wondered if there was a cure. I panicked. I feared.

We followed as our beautiful baby had awful invasive tests…probed…scanned. She was surrounded by tiny premature babies yet she was a bouncing 8lb 1oz. We cried as she screamed.

Tests over in a blur of fear, we were given a private room all of our own. We could sit without curtains and be hidden. Rob could stay all day. No visiting times for us.

We had been told that if I stayed in hospital with Evie then they could rush the testing through. They could confirm what they suspected more quickly. There was no medical reason for us to remain there except for the results. I agreed to stay for that reason and that reason alone. We were desperate to go home and to be able to talk, to learn our new path and yes, to grieve for that imagined child.

The tests had discovered that Evie had a small hole in the heart. Not uncommon with any child, it would be likely to heal in time by itself and indeed it did.

For days we sat in that room…hidden, avoided, like a dirty secret.

Everyone that came in, every professional, didn’t directly discuss Evie’s condition. We were given no information…no leaflets, no internet access, not even a pen and paper. These were the days when we couldn’t access the internet from our phone. We definitely didn’t have wifi or iPhones.

We were lost. We had asked for information but were told to wait until Evie’s diagnosis was confirmed. Told not to worry until then.

Imagine sitting in a private room. You can hear families all around you. You’re left alone by doctors; the midwives simply want to check your stitches and that feeding was ok. No one wants to talk about the baby elephant in the room. No one wanted to be the one to have that talk with us…to show us the detail. No one reassured us.

We were desperate for information. We were terrified but needed to face the future. Our future and we needed to help our child.

Imagine feeling that your life is on hold. We lied to family and friends as we had been made to feel that we don’t tell anyone unless Evie’s diagnosis was confirmed. I begged my parents to bring baby photos of me to the hospital but didn’t tell them why. It must have been an odd request but they did it regardless. We told them what the medics thought and they supported us.

All I could see was my mini me. She still is my mini me.

So we clung to our beautiful child. One thing that we knew above anything else was that our baby was the centre of our world. She was wanted. She was loved.

My parents were a rock. They brought us leaflets, they took time to access information for us when the hospital failed to do so. We weren’t ready to read it in front of anyone but we did in our own time.

Our treatment, the ushering into a private room, the abandonment…made it feel as though Evie was a dirty secret. It’s not that they rejected her…or even us. It was the simple ignoring of a major issue. We needed to know. Information is power after all.

Evie’s Dad actually ran along a corridor, chasing a doctor to get her diagnosis confirmed. If he hadn’t have done that, I’m not sure how long we would have been left there…brooding. We were then free to go…that was that. Again no information…only a list of appointments.

We felt that Down’s syndrome was something to be ashamed of.

When nothing could be further from the truth.

Yet because of that start, we feared people’s reactions. We adored Evie yet felt that we had to protect her from society’s negative reactions to her.

That took a long time to deal with. That conduct as well intentioned as I’m sure it was, hurt. We were damaged.

I see lots of blog posts about what not to say.

In this instance I suppose the most important thing for us was don’t ignore the diagnosis. Address it. When people talk about conditions it makes it easier.

Yes, never say sorry. Never say “you’re so strong” and never say “I couldn’t do it” because you could, you would…this is your child, your life and there is nothing that you wouldn’t do for her.

Oh and please never say “special children are sent to special parents” as it’s simply not true. We aren’t picked out. It’s the luck of the draw and we are truly lucky. Every night as the girls say their prayers, we remember what lucky, truly fortunate people we are.

An extra chromosome is nothing to be ashamed of.

It is no one’s fault.

It’s not a bad thing so how can it be a fault?

Yes there are differences…but then we are all different. And blessed for those differences.

Baby elephants…like mother, like daughter.

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What Evie Did

Let’s talk about homework.

I was one of those odd children who used to beg for homework at primary school. Back in the good old 1980’s we weren’t given homework in primary. It just wasn’t the done thing. I remember being excited that I had maths homework to take home when I’d asked for it aged 7 or 8.

Now in progressive 2016 kids are given homework from their first day of school.

I’m a great believer in learning being fun. I find learning easy, always have done. I love to learn. I’ve never really had to struggle with work unless it was physics…and that was only because I wanted to know why these things happened. Once I stopped asking why and just learnt the physics’ facts, I achieved an A. Not because I excelled but because I had the ability to retain facts and figures and could apply them to situations.

Being the parent of a child with SEN makes homework a whole different game.

Evie is so tired when she comes home from school, I often struggle to get her to do anything for me, let alone sit and do homework.

Often when kids with additional needs come home, they relax and when they relax their behaviours at having been constrained for the day, run full throttle. It’s hard to manage homework at times like that. It literally takes a back seat.

Evie’s school have always been understanding of these things. The homework is adapted to her abilities. She is beginning to use scissors to cut along lines, she has numbers on a sheet of paper, she cuts them out, she chooses the right number in answer to a sum and she glues the right answer in place. It’s perfect for her.

Sometimes this works like a dream and other times she isn’t remotely interested and the homework battle begins.

I know from friends that not every school adapts their homework to the abilities of the child with SEN. Often the homework that has been set is so complicated that a child without SEN would struggle. Yet this piece of work hasn’t been adapted to the child with SEN. That’s wrong. It’s unfair and it certainly isn’t inclusive.

Evie generally follows what her school friends are doing. She has her own work to follow too, but she is always included in the same work…simply adapted to what she can do.

This way she is included. She is part of the school community and she doesn’t feel isolated.

Whilst Evie may have SEN she is socially astute. She knows when someone treats her differently. She may not be able to verbalise this yet, but her behaviour illustrates her confusion and frustration.

As a parent if my child’s school weren’t setting appropriate homework I would worry. Parents rightly would begin to be infuriated and irritated. The school have the job to teach…as parents we support obviously. It’s a partnership. But to set the child something that was so obviously inappropriate, well, questions would be begin to whirl…

1. Do they understand her?
2. Do they know what she is capable of?
3. Do they want her there?
4. Are they looking after her properly?
5. Can we trust them?
6. Is this school the best place for her?
7. Is it our fault that she can’t do it; should we be doing more?

And then the guilt sets in and the stress.

How do we approach the school?

Who is best to talk to?

What if they don’t help or dismiss us?

What will they be thinking about my child?

Will they treat her differently because I’ve called their teaching into question?

When the trust between a parent and a school starts to recede, it’s easy to see that it could spiral beyond control.

You see being a parent of any child is stressful…one with SEN even more so. You have to have a relationship with the school for your child to get the best out of it. We have to trust the school to tell us what is happening.

Evie can’t really tell me what’s going on in her day. When she does tell me things, I don’t even know if they’re true. I check with other parents about things that she said has happened…a child being taken to hospital in an ambulance after slipping on a sandwich wasn’t true, nor all of the blood she claimed to have seen! Great imagination though!

I’m lucky that I can message other parents at her mainstream school to chat about what’s happened. It helps me to build a bigger picture of her day. Yes we get brilliant feedback from her 1:1 but it’s lovely getting the kids’ perspectives about “What Evie did”.

Our children are our most precious possessions. Yes, we do possess them as they possess us. They are our greatest achievements.

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A World Without Down’s Syndrome?

Let’s address something…

I know that I harp on about many things…politics, baby loss and Down’s syndrome. I make no apologies for it. I do so because they really matter to me.

You’ll have seen me posting lots and blogging in the run up till tonight’s documentary on BBC2 at 9pm – “A World Without Down’s Syndrome?”. This documentary matters to me and my family, matters to the Down’s syndrome community but it’s much more than that.

This documentary matters to us all, it’s about the society that we live in. If you haven’t been reading my posts (shame on you) surrounds the introduction of the non invasive prenatal test, NIPT on the NHS. This test more accurately gives results for chromosomal differences (hate the word abnormalities). Including Down’s syndrome.

I have major concerns about this test. It’s not about the test itself, it’s about the way it is being used and sold to pregnant women. The NIPT will decrease the risk of miscarriage and that is a great thing.

What bothers me is that women aren’t being told that firstly the test is optional. You don’t have to have it.

It’s not diagnostic – it’s more accurate at assessing the chance (not risk) of having a child with DS and other conditions.

The issue for me personally is that women aren’t told what Down’s syndrome actually is. In the main it seems that the health professionals aren’t keyed up about disabilities. They portray Down’s syndrome as a terrible thing. It’s not. It’s really not.

They use words like “suffer”. Evie doesn’t suffer, the only thing she suffers from is society’s bad attitude and assumptions about her. Down’s syndrome isn’t a disease, she’s not contagious. She’s just a little girl with a huge appetite for living and cake and chocolate.

It goes without saying that I wouldn’t be without Evie for the world. She’s changed our lives, so many people’s lives for the better.

Down’s syndrome isn’t scary. It makes you think differently about yourself as a parent. It makes you question what type of person you want to be.

If the NIPT is rolled out across the NHS as it stands, women won’t be fully appraised with detailed and unbiased information. I’m not asking for women to be given a rose tinted view of the DS world, but I don’t want them to be told horror stories either. Balance is all that’s needed.

The NIPT has implications for society as a whole. Where do we draw the line with testing? We have great shock at the fact that some families choose to have male children rather than female through testing…why is this so different?

If we could test for IQ would we allow termination on those grounds?

There is so much that I could write about this…such a huge expansive issue.

The fact is this in Iceland where the test is taken up highly, every baby who has been detected with Down’s syndrome has been aborted. Now as sickened as I am by this, it is the mother’s right to choose but has that mother been given full and unbiased information? I doubt it.

I don’t want that to happen here. I want us to have information, balance – an informed choice. If we have information made available to mothers who can have the test, they can decide what they want to do. They need no pressure. They need support whatever they choose to do.

They need to know the facts from the fallacies.

I know that pregnant mothers are often being told by health professionals that they should have an abortion when their baby is diagnosed with Down’s syndrome. Some have been booked in for one without any consultation – it’s assumed that this is what they will do. Some are offered abortions right up to 40 weeks of pregnancy…that’s right 40 weeks. This isn’t scaremongering, this is happening right now in our hospitals.

This is why parents need information. They need our support. We need to take a good look at ourselves in the mirror and ask is what is happening now morally right?

Please watch the documentary tonight. I’d love to know your thoughts.

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I’ve been thinking…

I can hear my husband sighing in the background, those words often precede something that he doesn’t want to hear

But I have been thinking.

After seeing last night’s documentary “A World Without Down’s Syndrome?” I’ve seen many comments dismissing the views of parents of people with DS. Dismissing their views, my view that this world actually isn’t a bad world.

The link if you missed it is here –

For me this world is often a rollercoaster of emotions. I laugh harder than I thought possible, I cry often, I cheer and applaud the skills that she gains. I have friends who are incredible, I’m in a community full of love.

I blog about the up’s and down’s of our lives as a way of making sense of my own world, reassembling my thoughts.

I find it utterly disrespectful that my view and others like me, is so easily dismissed.

We’re criticised as being “too emotional” or “too close”. Even that it was easier for Sally because she could afford child care. There always seems to be some reason why someone belittles our views.

I’m an intelligent, highly educated woman. For many years I held a successful, responsible job. I’m not easily fooled and one thing that I do not do is tell lies. Lying is the worst thing for me. (Not singing my own praises honest.)

So why should my view be dismissed just because I’m a mum to a child with Down’s syndrome?

Should medics’ views be dismissed because they have direct experience with patients with Down’s syndrome? Because this is their chosen specialist area? Of course not.

The fact is that parents of children with Down’s syndrome are experts on Down’s syndrome. We have to be.

Yes I have these things called emotions. That’s an asset.

Yes they do get in the way occasionally when I’m trying to keep a calm and level head when someone is failing my child.

Yes I do berate services in my blog or on Facebook when they fail us. If you’re given a job you should do it, let my daughter down and I will tackle you about it.

It’s been pointed out to me that I gave up my job because of Evie.

Actually that’s not strictly true.

I was subject to a set of tragic circumstances a few years ago which meant that my family and I decided that the best solution was for me to remain at home for the time being.

We had no back up child care – my mum who I trusted implicitly had passed away. I was made redundant. My son then died. Other events had occurred and I needed to regroup, to survive and prioritise.

What had been the centre of my world at one point…my job, took on far less significance. It was a high pressure role and I decided that my life was hard enough. I found it difficult to trust people with my most precious child. I needed to look after my family, and no this didn’t mean just Evie. After her brother’s death I became pregnant quickly again.

That pregnancy was filled with fear.

I didn’t care if my child had a disability.

I wanted my child to live.

Sounds flippant doesn’t it? But it’s not.

For 9 months I prayed and hoped for this child to live.

That type of loss changes you. My priorities in life changed.

I began to spend more time looking into Down’s syndrome, how to help Evie and others. On this path I became active on social media, I found confidence to argue my causes.

It is very different to argue my client’s case in court than to argue my own.

That confidence has now come in abundance.

I will not be shot down for expressing my opinion. I am not just a mum.

I am a professional person. I am an expert in my child. I know more about SEN law that most people.

I have sat on both sides of this fence – the side where I know in all likelihood I would how aborted my child.

And my current side…

Those who challenge me and parents like me…can’t you understand that we are the voice of experience?

Do you remember as a teenager your mum telling you things?

And you would think “yeah whatever mum”

Days, weeks, months, even years later – your mum was proven to be right.

Remember how that felt? That realisation.

I’ve done this.

The amount of times I’ve said in my head “sorry Mum” when I realise that she wasn’t lecturing me or trying to stop me having fun. She was trying to help me to make the right choice by sharing her wisdom. She was trying to share her knowledge as she had been there before.

Do you see now?

I’m not trying to tell anyone what to do.

I’m imparting my knowledge and those like me.

I don’t have rose tinted specs on.

I know that there are real difficulties at times. And what’s more I don’t and never would deny them.

Regardless of the negatives I could not actively choose to abort my child because she had an extra chromosome. I couldn’t.

There…I’ve said it. Dismiss me as you will. Just remember what I’ve said about your mum and all of her advice. If your mum was anything like mine, think again.

When I balance what I gain from having Evie against what I “lose” – there is no competition. She wins every single time.

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