To whom it may concern

Some days I am so tired I just want to stay in bed...but like many other mums with special needs kids, its not an option. 

My Jade is now 21 years of age and I never dreamt for one moment when I was carrying my baby that I would still be responsible for making everyday, simple decisions for her. I did not know that every day would be full of confrontation and bursts of outrageous anger. I could not have even begun to think about how I would live my life, especially the night times, in a perpetual state of fear that I will lose her to this awful syndrome. The constant nagging to make her move around, go swimming and exercise would be so easy to let slide, but if I let up even for a couple of days, she could become seriously ill. So I accept the arguments, abuse and tears and try to stop the despair she feels. 

I try to accept the difficulties it brings within the family and I try to ignore the people close to me that think I should deal with Jade harsher than I do because they simply cannot be bothered to find out the massive complexities surrounding this syndrome.

I will not apologise for taking care of my child the way I do. You try living everyday watching another young sufferer of PWS lose their battle for life, knowing it could so easily be your child next.

Advice is always welcome if alongside it, comes support and help, If you cannot do that, please refrain from making remarks and comments about which you know nothing about. 

Although I am tired most of the time as I am the sole carer for Jade, there is not a moment I wish that Jade was not born but I do wish the syndrome did not exist with all my heart and soul.

I have had some very dark days over the last few years. It has not been easy carrying on every day as if everything is ok. But...I see a light at the end of the tunnel. 

Recently, my sister moved very close to me. I have someone to talk to about my deepest fears and my anxieties. She never judges nor dismisses my worries and cries with me when I am simply at my wits end. My days are now full of laughter and more importantly life is not as scary as it used to be. 

There are many worries I cannot share with Des and my precious girls, because I am seen as the strong one. But I can share them with my sister who puts a whole new perspective on everything. 

Some days I am so tired I just want to stay in bed...........but not today as today is another day to fill with laughter.

Love you Ang xxx 

Facebook Faux Pas

As some of you will know, my Facebook page contains many references to Jade and PWS. I also have a feeder page, specifically for PWS. 
A simple, inoffensive post regarding some of the difficult traits has been reported to Facebook and in turn, Facebook deemed it worthy of removal and a ban for me. 
Despite many emails to Facebook  no answer was forthcoming and the only explanation I was given was that the post violated their rules. 
I waited for the 12 hours to pass and I re-posted the same paragraph, with a little extra! The following is the exact post


I am reposting...lets see if I get reported and banned again!
For those that do not fully understand the complexities of PWS. The following is just a very small part of a complicated syndrome. 
Anger is a huge part, repetitive actions a huge part, obsessiveness and the inability to 'let things go' a massive part and when dismissed or rejected, the sadness and depression is something 'normal people' will thankfully, never experience. 
These are some of the emotions that my darling daughter deals with each and every one of them, on a daily basis. I do not expect anyone to understand how difficult it can be for Jade but I do expect people to respect that she is 'different' mentally, no matter how normal she may appear. PWS is a horrible syndrome and Jade deals with it in her own way, clearly far more grown up and brave than those that chose to report and ban!

Unbelievably, I awoke this morning to find I have been banned again for the exact same post! 
My question is this -

Who finds PWS and its complexities so distasteful they feel they need to report it?

Clearly whoever follows up the 'reporting' should not be working in that particular position, as try as I might, I cannot find anything wrong with the highlighted, original posting, thus, this particular person is not reading the posts before they deem them unsuitable and against Facebook policy!

I have tried to contact Facebook, have sent hundreds of emails and no response at all. I shall now make it my business to raise this'wrongdoing' as far as I can.

Someone out there needs to grow up or at least stop reporting things in secret. Man up and come forward so you can explain to me exactly what it is you find so offensive!

Meltdown by numbers

How often does the word 'meltdown' enter your daily vocabulary? Once a week? Once a month? I would imagine that unless there is a worldwide, catastrophe of the Chernobyl kind, I do not believe this particular word is vaguely prominent in your life...unless you are the parent of a child with PWS! This word then comes into its own. It is a spectacular word that takes on monumental importance in our everyday lives. It can change the course of your day, your plans, your commitments and even your health should you choose not to adapt to the regular explosions that burst forth involuntary and without warning. 
Our lives as relatives of PWS sufferers are based around a series of events.

Prevention ( evade all known trigger points as if they are a deadly plague. ) Trigger points come in all shapes and sizes. The most prominent one for most of us is food! Although for obvious reasons, our relatives life cannot and should not, be based on food, ours certainly is. Menu's, calories, recipes, calories, locked cupboards, calories, locked fridges, calories, social gatherings ( where food is almost always within easy grasp.) calories, school, calories, shopping, calories!  Have I mentioned calories? I knew I had become obsessed with Jades calories intake when on one particular day, she had picked at and removed wallpaper strips. I caught her licking the glue remnants....My first thought.....Oh my, How many calories does glue contain?  I kid you not! 

Changes 
We, as parents of older PWS children, do not make the mistake of following the age old proverb that change is as good as a rest. Our children have a deep rooted need to know exactly what is happening during the course of the day. Once set, the routine should not be altered or deviated from unless we are fully prepared for the consequences. These can range from full blown meltdowns to repetitive questioning as to why we are doing something not discussed or, on the daily agenda. Although we take change in our stride, if you are a sufferer of PWS it can totally turn your world upside down. Lets not make the mistake of thinking that a meltdown is caused by something big. It can be the consequence of something so small it does not register within the normal brain function. Ie you change the plate you normally serve your PWS relative dinner on. A pervasive preoccupation with control, totally overrides any kind of flexibility and will lead to the bubbling over of an ever present anxiety.This is something our children have no choice but to live with. A constant uncomfortable feeling that  permanently hovers.
 Can you imagine living in a state of indefinite high anxiety? No, nor can I but most PWS sufferers have no choice but to accept. 

The worst thing, because my daughter does not know any different, she has reason to think that the way she is feeling is the same for everybody and believes it to perfectly normal. Many times I have watched Jade struggle with changes in our lives. Small insignificant deviations that become huge weights of worry until she turns it around in her own mind. I can watch the anxiety fall away from her once she has reached her own conclusion as to why something has changed. The relief for her is tremendous. It matters not if the conclusion she has come to, is not correct. In this house, importance is placed upon the end result of calm! 

Sense of humour

On one of my many visits to the hospital, I remember a particular consultant remarking on what he believed to be a facet of PWS.

' They are born with the hump!'

Actually Mr Youshallremainnameless That was another part of the syndrome you got wrong. 

Jade does indeed have a sense of humour all of her own. It is nothing like mine or yours, it is her own unique blend of what she finds funny in her world. 
Jade has made a very special friend. Her name is Janet who also has PWS. Jade and Janet Skype most evenings and the gales of giggles that escape from behind the closed door are a joy to listen to. For the first time Jade has someone who genuinely understands her humour and indeed, adds to it immensely  To hear the girls laughing the way they do over things that we wold not consider remotely funny is a medicine that should be bottled were it possible. 
My husband has spent many years trying to give Jade a sense of humour. Our humour. He still receives the same blank look as he did when she was tiny except now she knows Dad is trying to be funny and the blank look is accompanied by a smidgin of tolerance and a quick retort! Usually whichever word she finds comical that particular week. At the moment everybody who behaves in a silly manner is a 'Plank!' Nope, do not ask.....I have no idea either!

Negativity

Imagine having all the symptoms of clinical depression sitting in a small compartment in your brain. One misplaced word can open the floodgates and release the sadness, low self esteem, tears and negative feelings associated with depression. Imagine being a parent/sibling that has to walk on eggshells everyday to ensure that the 'Beast' stays locked away in that compartment. Like most parents we have learnt over the years that praise for your PWS child is priceless. Self esteem is the single most important thing that keeps the 'Beast' at bay. 

Jade recently had an assessment to see if she was eligible for direct payments for her group she attends. If Jade could do certain things, her eligibility would be nil. One of the requirements was the assessor asks Jade a series of questions. It is a point system and they are awarded each time they answer with a positive. The more points accumulated, the less monetary award is given. Now imagine that you have spent most of your child's life making them believe in themselves. The assessor comes into your child's life and asks questions about tasks that she cannot carry out but you have made her believe that she can. You have done this because of the emotional damage that is caused by any kind of negativity. For instance;
Assessor - Jade can you cook a meal?
Jade - Of course I can.
Reality - I put the gas on. I carry the pans. I fill the pans with water. I prep the food. I count the calories. I drain the food. I turn the gas off. I do not leave the room. Jade chops vegetables with a blunt knife and spoons the food onto plates. But as far as Jade is concerned she cooks the meal because we have made sure she believes she can!

We live in a discriminatory world. A world where the disabled and  special needs are assessed, reassessed and assessed again. If by giving my daughter a sense of self worth I lose out on money that she should be entitled to, then so be it. 

You cannot put a price on peace of mind or inner calm for those unable to maintain a sense of importance without positive, daily input from those that love them unconditionally.

Hindsight

Hindsight

(Taken from my book)

“I am afraid your baby will not survive the night.”

I stared in horror at the Consultant. I remember being shown into this separate room, set away from other mums and dads. It was  pale blue , the walls adorned with simple prints of pretty flowers. A small, cheerful,  sunny room where the anxious parents of new-born babies sat terrified, waiting to hear the best or the worst news of their lives. My news was clearly the worst kind.

“I really am very sorry.” The consultant was speaking again.

“But I have only ever seen this once before and the baby did not survive.” He gathered up his notes and stood up, pausing briefly to pat my shoulder sympathetically.
“The signals required from her brain to her muscles are more or less non-existent.” He explained absently. “You should prepare yourself for the worst.”

I could not even cry. I was numb. Jade was only 18 hours old and already being condemned as one of those “sad and tragic” statistics.

I allowed myself to be led from that bright and cheerful room. Through the bustling maternity wards where perfect babies were being held and cooed over by proud, beaming parents. I passed the nursing station where a pretty auxiliary smiled sadly in my direction. I remember that walk like it was yesterday. Every single detail burned into my memory for ever. It was the longest walk of my entire life.

Jade 45 minutes old

Jades birth was not so much traumatic as scary. Well,  for me anyway. It was an emergency C section and I was terrified. Dressed in the very fetching, compulsory hospital gown I was wheeled into theatre and given an epidural. I just shook from head to foot. Music was playing in the background ( Billy Jean by Michael Jackson would you believe!) and it was a flurry of activity. The surgeon laughed and joked his way through the operation, the nurse holding my hand behind the green sheet ( although why they bothered with this screening I have no idea. I could see all the gory details in the huge stainless steel theatre lights above me) rolling her eyes at his terrible one liners.

 It was not an uncomfortable experience, all I could feel was a strange tugging and a warm sensation as Jade entered the world silently at 11.10 am. White, limp and so tiny. I could see her mop of black hair as I looked at the makeshift, ceiling mirror. Jade was passed to the nurse and within a few seconds she turned pink. A few seconds more and a tiny mewling sound escaped  then a bigger cry. I remember gazing at her perfect face. Jade opened her eyes briefly. They were deep pools of inky, blackness. She was beautiful. I couldn't really take it all in. 

'You have a lovely baby girl' The surgeon boomed.

I held her briefly before she was whisked off to be weighed along with all the other things they do to new born babies. I suppose, like most new mums, you cant quite believe what has happened. You are now solely responsible for this tiny, helpless human being. Their survival depends totally on you. You float for a little while on the euphoric cloud that hovers above you, feeling pretty clever with yourself.

After all the tests ( including the Apgar) Jade was wrapped in soft, white towelling and handed to me, then we were wheeled back to the ward. My brand new, baby girl safely ensconced in my arms and me on my little fluffy cloud of happiness, grinning at everyone we passed. We parked the trolley and I managed to slide onto the bed. With the beady eyes of the nurse on me I prepared to feed Jade. Personally I did not see how this was going to be possible. My Boobs had swollen to mini rocks of Gibraltar and for the first time in years, a bra was not required! This was just simply going to work, no matter which way I placed her, she disappeared as soon as I presented her with Mount Etna!

Despite trying for nearly an hour, Jade was not interested, preferring to sleep. By this time I was beginning to hurt. My tummy, which had been pleasantly numb since we had left the Theatre, was relinquishing the painkillers and the epidural was wearing off with a vengeance. The nurse took Jade and suggested I try to rest and she would feed her (I had expressed some of the first breast milk). This I agreed to and settled down as best I could in those awful, starched to death, hospital bedsheets on a mattress made for elephants! 

My Dad and Step Mum arrived within 2 hours of the good news. Dad armed with half of Sainsbury's fruit section and Mum with balloons and flowers. I managed to get out of bed and we walked ( clearly I use the term walked in my case, very loosely ) along the corridors as the nurse instructed. I was still pretty much euphoric and felt very important. A new Mum's prerogative I think! 

We returned to the ward, took the compulsory pictures and I was told to rest. I kissed my family goodbye and arranged to see them once I was home and settled with my new baby. I checked on Jade

( returned to my bedside by the same nurse ) she was still sleeping soundly. I remember smiling and wondering what all the fuss was about with newborn babies that cry all the time. I was sure lucky with Jade! I dozed off happy and contented.

 I awoke to find a young man in a white coat leaning over Jade in her small perspex cot. He was moving her legs back and forth and writing something on a clipboard.

'Is there a problem?' I struggled to sit up.

He smiled at me over his glasses.

'Well baby is not doing as well as we would like.' I felt myself go cold. 'Nothing to worry about, we are going to run a few tests.' 

With that a nurse entered the room and whisked Jade out the door. I was left with very little information and a sick feeling in my stomach.

I did not have the luxury of a mobile phone, nor was I able to walk to the smoking room at this time of the evening ( Yip, they used to have them in hospitals!) to make use of the one installed for patients. I just lay waiting and wondering. Arguing with myself, dismissing different scenarios and most of all, hoping that everything was ok with my brand new baby daughter.

At 8 o clock that evening, a lady doctor entered my room and gently told me that there was something wrong with my baby. She was floppy, sleepy and not interested in feeding at all. She had no survival instincts and had been moved to the Special Care Baby Unit. She was to be transferred to Guy's Hospital in London first thing in the morning. I remember crying and begging to go and see her in SCBU. She promised me I could go to Jade as soon as they had finished running the tests. Meanwhile would I like a cup of tea! 

I created such a fuss I was actually allowed to smoke in my bed as long as I kept the window above my head open. I was given some sort of sedative.

I was woken the next morning by a nurse requesting I gather my things together as the ambulance was waiting downstairs to take us to Guy's. I met my daughter in the corridor outside. She was in a portable baby care unit, attached to many wires. Bleeps were making lights flicker on and off , or maybe it was the other way round. I didn't know nor did I care. My beautiful daughter was lying in a capsule of perspex, surrounded by technology and paramedics. I could not remember being this scared in my whole life.

 

Fortunately, I was totally unaware at the time, that this would be the start of a lifetime of fear for me. 

21 today.....Happy Birthday my precious girl

Today, my child will have cake! A large slab of a fabulous, gooey, chocolate cake made by my clever sister in law Kathryn. It will be full of calories, totally fattening and simply gorgeous. I will still feel extremely guilty letting Jade have the cake but.......today she is 21 years of age. A wonderful age. An age that should have no limitations placed upon it. An age to enjoy and make merry with Champagne and glorious, squidgy,chocolatey cake.

Today I do not care (probably not true lol )that she will put on weight by eating the cake, I am fully aware that I am committing a huge sin by allowing Jade a slab of cake but I am also aware, as are most PWS parents, that the 'feel good factor' in allowing a naughty treat occasionally, far outweighs anything else and I think a 21st Birthday comes under that particular heading. 

Jades sister Lucy and her boyfriend Gareth have taken Jade to the zoo today. It is one of her favourite places in the whole world. I have to say Colchester Zoo is pretty amazing. They are extremely good with kids that have special needs, patient and kind. Full 'Mum' marks to them!
As you can see Jade had a ball!

BIRTHDAY TREAT TO COLCHESTER ZOO WITH SISTER LUCY .

To finish off an amazing day for Jade, a visit to her Aunties and Uncles where she was presented with more cake (Aaaarrrrghhhhhh!!!) and family, gathered together to celebrate  the birthday of a very special girl.

Ohhhhh What a lovely day!

In October of 2011, The APT group (Now known as The Befriending Scheme in Haverhill)   Jade attends on a Friday, held a Talent Competition. Tony, one of the brilliant volunteers, helped Jade write a song. She sang this accompanied by Tony on the Guitar. All of the acts were fabulous and Jade was lucky enough to win. 

This is the song Jade and Tony wrote:

Sitting on the beach, watching the waves.
Looking at the seagulls, I drift away.
The sand beneath my feet, the sun in the sky.
Waving at the boats as they roll by.

Ohhhhhh what a lovely day.
Hey, hey I'm on my way.

I'd live in a sandcastle that I make.
I would have an ice cream with a flake.
Swimming in the sea where I love to be.
The birds and the sun and the fish and me.
I'd take a walk across the sand.
A bucket full of shells in my hand.

Ohhhhhh what a lovely day.
Hey, hey I'm on my way.

I hope that today will never end.
To my Mum a postcard I'll send.
I'd tell her how happy I am.
And ill be home when I can.
At the end of the day when I'm nice and brown.
I will watch the sun go down.


Ohhhhhhh what a lovely day.
Hey, hey I'm on my way.
Ohhhhhhh what a lovely day. 

Picture painted by Lily Hall

Video link (although poor quality as was taken with phone, you will get the gyst!) 

OUR JADE

Morning Sickness.....My ass!

Morning sickness, my ass!  How about night, afternoon, tea time, lunch time, bed time and all through the night time sickness. Now that would be more in keeping with the truth!

I knew the projectile vomiting I was experiencing for most of my waking hours was to be attributed to ‘normal’ morning sickness. How any female survives the 6 weeks or so ‘Exorcist’ remake I will never know. The waves of nausea are relentless. It is a never ending barrage of feeling sick, being sick and finding a new best friend in the bathroom that you seem to spend most of your time hugging and pleading with. No man will ever understand the totally exhausting drain the constant feeling of nausea puts upon your body. It is a misery that takes over your life for those first, few, hormonal weeks and you truly believe that you will never feel human again.

 Then suddenly you can eat without hurling, you can smell aromas like coffee or wet mops without taking part in your own personal sprinting session to the nearest fluid receptacle. You are overjoyed and can actually start to enjoy being a ‘Grow bag’ for your little offspring. Until you give yourself something else to worry about!

 I had another appointment at the clinic and this time I was to take in the movement chart, given to me on the last check up. Jade always managed to move the required ’10’ times per day but that was about it. There were no huge movements or reactions to loud noises at all. I often felt I was being over dramatic with my concerns. After all, Jade was my first baby and I really did not know what to expect. Like most new mums I poured over books and magazines, eager to see how big my baby was at certain weeks, how far the baby had developed and as I knew I was expecting a little girl, all the latest nursery colour schemes and gorgeous baby clothes.

 I started to question my pregnancy after Jades movements seemed to be far less than what appeared to be the norm amongst other new mums. I mentioned the lack of movement to the nurse at my next ante natal. She in turn mentioned it to the Doctor who checked Jade and said everything was fine. I voiced my concerns again at the next visit. After the rolling eyes ‘look’ was passed between the Nurse and Doctor. Clearly I was a Diva! 

 I was given an ultrasound and the measurements of Jades head were taken. She was a little smaller than they would have liked and I was asked to return again in 2 weeks for another check-up. 

More visits to the clinic ensued and each event was the same. Movements checked, ultrasound given and the ‘Baby is a bit small’ conclusion. Jade’s first album was made up purely of Sonography pictures. A mass of thin, shiny paper squares, all showing the same ‘Alien’ image from different angles.  I have never understood how new parents manage to fall instantly in love with a black and white, grainy ‘Skeletor’ lookalike, let alone start making family, facial connections.

I was reassured each time I attended. Yes Baby was smaller but everything was fine. Mum was to stop worrying and enjoy the last few weeks of pregnancy, as life as I knew it, was soon to be over…This delivered by an all too smiley nurse who clearly, was aware that the designer mascara and lippy I was wearing was soon to be a thing of the past.

It did not matter really, none of it did. Because I knew something was wrong.