Turning Crappy into Happy!

Can you remember the last time you were hungry? I mean seriously hungry. Maybe you were on a too strict diet? You had missed breakfast, lunch and dinner? Or  fasting for a medical or religious reason? That awful, painful, gnawing sensation in the pit of your stomach. You maybe get the shakes (some people do) Your concentration levels are non existent and all you can think about is your next meal. People are asking you questions, they are asking you to perform specific tasks like 'Please tidy your room' but all you can think about is food because the pains are getting worse and you now feel sick with hunger. You look around for something to stop it all. Soap, tissue, frozen food anything to make it go away.

Can you Imagine this?

Imagine your whole life revolves around food. Not because you are a chef or a restaurant owner but because your daily routine is centred entirely on what you will eat that day, more importantly, what time you are going to eat. Now imagine that you hate feeling like this. That you fight this feeling until it saps all your strength but no matter how hard you try, it will not go away. Is there any point in subjecting yourself every minute of the day to a challenge that will never be defeated? Imagine also knowing that if you do not fight, you will probably die of an obesity related illness. Imagine that from the day you were born, this was going to be your destiny. A continual fight for a normal life, every single day. 

Could you do it?

Imagine that your daily routine is so centred on the next meal and by eating that meal, your pains, emptiness and anxiety levels will disappear for a few minutes and bring tremendous relief. Now imagine that for some reason your breakfast is delayed. The first meal of the day that you so depend on has been pushed back another 30 minutes or there is no time given. Your disappointment is huge. You have been telling that horrible pain in your tummy that it would soon be fed and would go away for a little while. You have repeated this since you woke at 4 am with the same pains. At six am whilst showering and getting dressed. At 7.30 am you are promising the pain in your tummy that it won't be long because breakfast is at 8 am. Your anxiety levels are now bouncing around the ceiling and your nerves are like an over taut nylon string, ready to 'ping' at any moment. Then you are given the worst news possible. No food yet. 

Would you get cross?

Imagine that you could easily put on weight by just eating  portions of 'normal' food. A stone in a weekend. 

Imagine being on a STRICT diet all your life. A diet that never satiates and you still can so easily put on weight.

Imagine being surrounded by other people who are able to eat bigger, tastier and sweeter foods than you.

Imagine your day to day living with stress levels so high that normal functionality is almost impossible on some days.

Sounds like something out of a weepy movie doesn't it. Unfortunately these conditions are alive and well and affecting 1 in 10,000 to 30,000 people worldwide. 

The constant hunger is a small part of a very complex and difficult syndrome. 

So maybe next time you see someone who is extremely overweight or possibly looks perfectly normal in every way but they are behaving in what society deems to be totally unacceptable. 
Try not to stare or point or make assumptions. Our PWS people suffer enough.

Turn crappy into happy and smile. You have no idea how much a smile can matter!

My beautiful daughter


Welcome to Prader Willi Syndrome

Normal versus special needs.

Normal versus Special Needs Parenting

Over the years I have read lots of articles and postings regarding the difficulties for parents with a special needs child. Most of what you are about to read will never have entered your head if you are lucky enough to have a family of physical and mentally healthy children.

I do not know many of the parents who have contributed to the following but would like to thank them for raising awareness of the difficulties faced by a disabled family and hope they do not mind me using their life experiences along with mine. 

I would also like to point out in no way am I implying that ordinary parenting is an easy task. Not at all. I have one disabled/special needs child and two non disabled children. It is simply a comparison and possibly a need for you to understand our world, just a little bit.

1. Mum's rarely get calls from their child's teacher.
    Special needs mums expect  a call from the school every time the phone rings.

2.  Mum's love it when relatives wear out their children with play, thinking they'll sleep well that night.
     Special needs mums weigh the choices: Allow rough play that will keep their child up all night and set back behaviour issues or disappoint well-meaning relatives who don't understand your child's disability.

3.  Mum's and Dads drop their kids off at birthday parties.

     Special needs Mum's and Dads can't seem to find the card  for their child that says, "You're invited."

4.  Mum's and Dad's put their children to bed and get a good night's sleep.
Special needs Parents monitor CPAP machines and masks, Apnoea monitors, suction tracheotomy tubes, oxygen tanks, reset pulse oximeter alarms and feed their children through feeding tubes through the night.

5. Mum's are asked to chaperone for school trips.
Special needs Mum's are required to be there just so their child can go on the  trip. 

6. Mum's know their child will eventually pick up reading in their own way.
Special needs Mum's must tackle reading skills with a sense of urgency and with all the research resources they can muster.

7. Mum's look forward to their children going off to college.
Special needs Mums do NOT look forward to deciding whether or not to put their children in state run, residential homes when they become adults.

8. Mum's stress levels raise from a 3 to a 10 if their child needs stitches or any minor surgery .
Special needs Mums' daily stress levels are already at an 8 so stitches or minor surgery can actually be a step down from the day to day stresses.

9. Mum's worry about spoiling their kids with too many toys.
Special needs Mum's will buy half the shop if there's a chance something will get their child stimulated.

10. Mum's hope they have enough food, goodies, etc. at their children's party.
Special needs Mum's hope that other children/adults will show up.

11. Mum's occasionally worry about one or two allergies.
Special needs Mum's have memorized the top 75 allergens, preservatives, chemical additives and toxins.

12. Mum's say, "I wish my child would stop growing!"
Special needs Mum's pray every night their failure to thrive child grows.

13. Mum's bring their kids to the doctor without any advance preparation.
Special needs Mum's have prepped their child all week with books and practice and repeated readings of how simple it is to have an injection.  They come in armed with favourite CDs and children’s books and it’s still a traumatic experience for both child and Mum.

14. Mum's are on a first name basis with other Mum's in their area.
Special needs Mum's are on a first name basis with their child's paediatrician  neurosurgeon, gastroenterologist, social worker and other specialists.15. Mum's tell their child to get dressed.
Special needs Mums have to dress their child multiple times before leaving.

16. Mum's worry about their child being picked on in school.
Special needs Mums know their child will be discriminated against for their entire lives.

17. Mum's get annoyed when their child won't stop talking.
Special needs Mum's would do anything to hear their child utter one word, 'Mum'.

18. Dad's wrestle with their boys for play.

Special needs Dad's worry their child won't recognize when wrestling would be inappropriate and instead must teach them, "Keep your hands to yourself."

19. Mum's sign their kids up for all kinds of extra-curricular activities.

Special needs Mum's hope their local park district will accept their child for an activity.

20. Mum's can plan a simple holiday at the spur of the moment.

Special needs Mum's have to plan holidays months in advance to make sure that appropriate accommodations can be made for their child.

21. Mum's tell their teenager to stop hitting the snooze alarm button and get their butt to school.
Special needs Mum's hit their own snooze button a few times and then gently wake up their teenager and carry them to the toilet.

22 Mum's and Dad's think much of their work will be done when their children finish school or college.
Special needs Mum's and Dad's face the challenge of finding 50 more years of help for their children.

23. Mum's look forward to an "empty nest."
Special needs Mum's wonder who will take care of their kids after they're gone.

24. Mum's take their child's developmental milestones for granted.

Special needs Mum's realise what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc. 

25. Mum's try to get their child toilet trained by preschool.

Special needs Mum's try to get their child toilet trained by Secondary school.

26. Mum's get to go on holidays during long weekends or when school is out.

Special needs Mum's holiday......well we KNOW we don't do that.

Jade, Lucy and Lily 2010

November the 5th

November the 5th

(Taken from my book)

We stood watching the fireworks through the flat window. Although we were the same number of weeks pregnant, my close friend Tracy was expecting twins. I watched as she rubbed her swollen belly ruefully. She laughed out loud each time the babies jumped after another set of fireworks exploded in a sky already strewn with the smoky remnants of burned metal salts and gunpowder.
 I placed my hand on my bump and willed Jade to move. Anything, a somersault, skydive even hiccups. I would have settled for wind at this point. I was scared now. Really scared.

Photograph by Lily Hall

Jade still did not move........

 It had been like this since I felt her very first, fluttery movements. Tracy was expecting twins so I knew her baby kicks were going to be far more exaggerated than Jades, but as I continued to compare our pregnancies as they progressed, the faint niggle in the back of my head, seemed to get bigger and bigger. I ignored it of course. Pushed the awful thought to the back of my mind as you do when you simply choose to dismiss that subtle dimension. 

Photography by Lily Hall

Tracy's family were a pretty great bunch of people. Her brother Bill had special needs and I thought Tracy's Mum and Dad were amazing with him. He was treated exactly the same as everybody else and I often watched and wondered how it affected them all as a family. 

'It doesn't Jane'  Tracy shrugged after I had plucked up the courage to ask her.

Photography by Lily Hall

 'He is just Bill, same as I am Tracy and Debbie is Debbie ( sister).

 'The only difference being, he is a spoilt git.' She laughed her hearty laugh and I knew she meant every word. They did not see Bill as being any different at all. I am ashamed to say that I did. Now of course, I understand completely. But hindsight is a cheap commodity. My excuse I suppose, was  naivety. That and of course my selfishness.  I was not to lose that until the day Jade was born. A short sharp lesson in priorities was waiting for me just round the corner.

Photography by Lily Hall

  As far as I could see, Special needs took up so much of your time. Family outings, holidays, social visits all had to be planned and executed in military fashion. Favourite toys could NOT be left behind without a nuclear fallout. With a 'normal' ( You have no idea how much I hate this necessary label.) child, a forgotten toy can be slowly dismissed under the blanket promises of a new one and the ever present bribe of sweets or chocolate. Not so with special needs. Their anxiety can levels reach apocalyptic proportions, which in turn produces the meltdowns that will match any domestic Chernobyl! Believe me I have witnessed this first hand on many occasions as I cowered in my front row position within the fallout area! 

Photography by Lily Hall

On November the 5th 1991, as we stood watching the Fireworks through Tracy's bedroom window. I knew..... I knew without a shadow of a doubt there was something wrong with my baby. It was no longer something I could dismiss or pass off as 'normal pregnancy anxieties.' My instinct had forced its way up from the deep recess within my brain and presented itself as a reality. 
I shared this with no one. A secret that filled me with fear and would keep me awake for many nights.
 When I did sleep, my dreams were full of strange pregnancies and births.I remember this particular one so vividly. I dreamt I had given birth to a tiny baby boy. He wasn't breathing but his eyes were open and were following me around the room as I moved. No one believed me when I told them he was special needs and needed help. I still remember the distraught fear as I struggled to make the nurses understand my baby needed medical help. I always woke up bathed in sweat and crying. An omen some might say. A sixth sense maybe. Who knows? I knew!

Mind the leather upholstery.....

Mind the leather upholstery....

 I had not been born with the so called built in ‘maternal’ instinct and to be honest, had never really felt the pull of overwhelming baby love, even for my nephews and nieces. They looked very nice and if just bathed, smelt delicious but I never wanted to take them home, especially in my new MGBGT. What if they were sick on the Magi leather upholstery?

 Clearly I was too selfish. I had a nice life, held a good job and enjoyed a brilliant social calendar. I was also 29 and had swiftly passed the age of ‘considered most fertile’ without a backward glance. My next milestone was definitely the colour coded MGBGT interior trim set which included new cream, leather seats with piping in British racing Green. I had not considered the possibility that the latest Mothercare catalogue would become a prominent feature on my coffee table. However, I found myself unexpectedly pregnant and my life changed almost overnight. 

I knew the projectile vomiting I was experiencing for most of my waking hours was to be 

attributed to morning sickness. How any female survives the 6 weeks or so ‘Exorcist’ remakes, I will never know.

The kitchen became a thing of the past. The very thought of whipping up a quick pasta had me reaching for the closest receptacle to hand ( apologies to the elderly gentleman with the lovely trilby hat sitting atop his weekly shop, standing innocently by the fresh fish counter at Asda in Gravesend.)

I of course asked the questions that all mothers to be need to know.......

1. When will my baby move?

    With any luck, right after he/she finishes college.

2.  My midwife tells me it`s not pain I`ll feel during labour, but pressure. Is she right?       

     Yes, in the same way that a tornado might be called a light breeze!

3.   What does it mean when the baby`s head is crowning?

      It means you feel as though not only a crown but the entire throne is trying to make its    

      way out!

The one thing I never lost throughout the pregnancy was my terrible sense of humour clearly! These little 'Funnies' kept me laughing and possibly sane.

I watched my ever changing body with interest. I tried very hard to be proud of my stretch marks and even stroked them lovingly as suggested in one of my magazines. My abdomen looked like it now had an inbuilt zip for the baby to make a quick exit on said due date and I couldn't help the thoughts that popped into my head at any given time regarding men and what would happen if they got pregnant.

Morning sickness would rank as the worlds number one health problem. There would be a cure for stretch marks and natural childbirth would become obsolete! Tell me I'm wrong!

Beginings....

Jade and myself

On 18th February, 1992. My daughter Jade was born by an emergency C section.
 She passed all the usual tests and was declared fit and healthy.
The very next day Jade was rushed to Guy's hospital in London and within 24 hours I was told she would not survive. 

Jade

This is the true story of my remarkable daughter and her struggle to live normally, in a world filled with food and discrimination.

I will share all the ups and downs we have had on a daily basis and include exerts from the book I am currently writing. 
Prader Willi Syndrome needs to be out there alongside other, better known syndromes of which there is no known cure. With the World Wide web at most of our fingertips, it is wonderful that this little known Syndrome can be bought to the attention of millions of people by simply hitting a button. 

Jade with her puppy Izzy.

Prader-Willi syndrome is a rare, complex genetic disorder, which is present from birth and continues throughout life. In 95% of cases it is not hereditary and can thus occur in any family. People with PWS are challenged by an untreatable, insatiable appetite resulting in almost constant feelings of hunger, together with immature physical and emotional development. Most have learning disabilities.  

Jade has had many negative encounters in her life, mostly by ignorant and rude people. It seems to be acceptable for strangers to stare at Jade and remark loudly on her size. It has caused many upsets and arguments, including an incident where I was escorted from Tesco's by Security Guards. I am sure that particular lady has changed her attitude since!

This blog, for me, is therapy. A chance to rant, rave, laugh and cry but most of all to show off my wonderful daughter and how she copes in a world of excess and prejudice.

Disability also affects the rest of the family. Jades siblings Lucy and Lily have also been subjected to nonsense and ridicule. Fortunately they have both turned into kind, caring and beautiful young women. Lucy has turned her childhood into a career by treading the path into nursing. She currently holds 2 positions. One of which is looking after disabled young adults in residential care. Of course I am a very proud mum!

Lily is still at school and is currently undertaking GCSE coursework. Lily has the most wonderful creative side. She excels in art, drama and photography. She is also the owner of a most beautiful voice. She has not chosen a particular path yet but I am sure she will be every bit as successful as her sister.

I hope you enjoy my blog and maybe take heart in the fact that the very worst news can sometimes be a blessing in disguise. Please feel free to leave positive and uplifting comments.