Meet Alex

Since Joseph has been born, I have become very active on Twitter and Facebook, and often am caught by stories of other children who have obstacles to overcome. This weekend I “met” Marie whose son Alex has a challenge ahead of him. Marie and her family live quite close to us, but without Twitter and Facebook we never would have met. 

Alex has a form of cerebral palsy, spastic diplegia. This affects Alex’s legs. Alex can walk, but he needs splints to help him, as the muscles in his legs are too tight. He is not as stable as other children, and is prone to falling. As time goes on children become more aware of those who are different, those who can’t keep up.

There is a treatment for Alex’s condition, an operation known as Selective Dorsal Rhizotomy. This is not new surgery, it has been performed at St Louis Children’s Hospital in Missouri  by Dr Park for  well over 20 years. 2 000 children have undergone surgery, and the success rate is reported at 100 %.

Unfortunately, although the treatment is proven to be safe and effective, the NHS have declined funding for Alex to undergo this procedure, as it cannot be done in the UK and the NHS have decided not to fund, in this instance, treatment overseas. As a result,  his family have made the decision to self fund. They require our help. All of us. 

Please dig deep, every little bit raised will help Alex to have this important surgery, which will improve his quality of life, for the rest of his life. A great investment I am sure you will agree.

For further information about how to help Alex, and how to donate please visit http://www.alexjameshopefund.co.uk/

Displaced Person

I don't know what it is like to have Autism. I have a rough idea in my head of what it would be like, that feeling you have when you are on your own in a foreign country, in a busy market place, you can't understand anyone, no one can understand you. The gestures, the word, the sounds, unfamiliar and frightening. You can't make youself be understood no matter how hard you try, you retreat further and further, as things get louder, more confusing, brighter in colour. Yet for you, as a traveller, there is a refuge, your hotel, a bar, or ultimately, returning home.

Imagine being in a place like this permanently. Where things are just out of your reach of understanding. Permanently. Where you know what sort of things work, but you don't know why. There is one thing that helps you make sense of it all. Your dad.

I read this story last night. It seems inconceivable that in 21st Century Britain we can be talking about, what is effectively, forced institutionalisation. This young man has a loving dad, who is the expert in his care, he asked for 3 days respite care, and this has turned into some sort of nightmare, where seemingly, there are no solutions. Because Autism does not fit the Mental Health Act, the authorities have taken it upon themselves to decide what is best for this young man.

My heart breaks for this young man, and his father. He has been separated from his anchor, from the one person who comes anywhere near to understanding and speaking his language, to help him navigate through the complex world he lives in, a  maze of social interaction where opportunities for misunderstanding abound.

In a previous incarnation I worked as a carer for children with special needs, several of my clients were young boys with Autism. One in particular was my favourite, he was feisty, funny and caring. He liked nothing more than to take his clothes off and run around, becoming more and more manic and excited the closer you got to putting his top on! He loved to swing, and to slide, and to smile and laugh. He also had "behaviour problems". I hate that term, but can't think of a better one. This young lad had had a procession of carers who couldn't cope, but I never found him a problem, and couldn't really see what the issues were, yes, he could be challenging, but I found if I took a step back and gave him space, there was nothing we couldn't over come.

One particular afternoon this young lad's father was busy in the kitchen, and he asked me to supervise the lad's play in the front room. He took us in and shut the door. Within 5 minutes there was frantic screaming and yelling. Me. I had never been so terrified in my life, and I couldn't, despite my best efforts, calm down. I was hysterical.

Dad rushed in, my little client was holding my hand, patting me, trying to calm  me down.

"What has he done? Let me get the accident report form". Dad looked resigned to another carer leaving them.

"No no, look look", the little lad said, pointing to three pteradactyl's perched on the curtain rail.

"Yes" I said, rather ashamed, "Your little boy is delightful, but would you please cage these birds!"

This was a turning point in my relationship with this special little guy. He had recognised my fear, an abiding and life long fear of indoor birds, and was right by my side, comforting me, caring for me, until someone who could deal with the problem arrived. And after this experience, we were a team!

People with autism, or ASD (autism spectrum disorder) need what we all need. Consistency, respect, regard and most importantly love.

Stephen has been separated from the one person who is best equipped to give him all this.

Please don't let this happen. Sign the petition. Blog. Tweet. Raise awareness. Bring Stephen Home.

Bullying

As a parent, I worry about bullying. It's a bit soon, I know, but its a big issue for me. I am already concerned because Joseph is small, and unless something amazing happens, he will be on the small side when he starts school. It's important to me  because both my husband and I were bullied at school. He overcame his with his quick wit, and winning smile, me, I suffered.

I was reading this today, sparked by a twitter post from BullyingUK. Over the years I have thought a lot about what happened to me at school, why it happened, and what could have been done to help me.

I was always going to be a target. I was quiet and bookish. I couldn't do sport, in Australia, not being able to catch a ball, or run with the other kids, is a massive deal. One thing in the article that really spoke to me was I did not recognise I was being bullied. Until it was too late.

My bullying began in grade 2. I was 7. I struggled at our dreaded PE class. This was 1970's Tasmania, we had to do gym class in our knickers and singlet!! Can you imagine that happening today? We were in our underwear! In the school hall! Under the watchful eye of Mrs Butler, who was like one of those gym mistresses in an Enid Blyton novel. It was hideous.

I soon got singled out. She used to throw stuff at me, balls, little bean bags, to see if I could catch them. Every time, I managed to miss. I couldn't do stuff other kids could do. It was demoralising. After some discussion it was decided to send me to a special school one day a week.

It began. The nickname. "Spazz". I wore that nickname all through primary school. It was what I was known as. And it hurt. Because I wasn't. At 7 I had a reading age of 11. I just couldn't catch a ball. I also had asthma. In the 1970's asthma was not as common as it is today, and I was singled out. And called more names. Like Darth Vader,

I was so relieved when I left primary school, it was very small only 130 odd kids, and I thought once I got to high school, it would be better. Our high school was massive, almost 1 000 kids.

It got worse. The bullying became sexual in nature, as well as the usual taunts about my sporting failures. Girls started bullying me as well. My life was becoming intolerable. Then it went up a notch, people used to steal my lunch, or my homework. Or dump tins of red powder paint over my bag.

I did nothing. My parents knew and tried to intervene, they wrote letters, they were ignored. No one really knew what to do.

And you know the biggest problem? I thought the bullies were right. I believed them. I thought I was useless at everything. I thought I was stupid. I was scared of them.

I retreated into myself, I spent my lunchtimes helping out in the library learning the Dewey decimal system, helping to cover books, assisting kids with their homework. I retreated further into my music, joining an orchestra, meeting other kids who loved to play music too. I joined a theatre company, and found other kids, like me, who were good at other things. I learnt to do stage make up, stage lighting and sound, and I learnt to act.

I found that by immersing myself into hobbies I met other kids, outside my school. Kids who didn't realise I was spastic. I felt, at times a bit of a fraud.

And you know what, I am ultimately very grateful I was bullied. Yes, it was horrible and isolating, but would I have learnt the violin, acted in several plays and become as well read without being bullied? I don't think so.

But what I am exceedingly grateful for is that mobile phones and the internet had not been invented in 1970's Tasmania. Bullying now has taken on a whole new dimension, and its frightening. And its particularly scary to see the amount of young people who feel that suicide is the only way out.

Bullies are winning on an unprecedented scale.

We, as a society, as parents, and as adult children, need to fight back, educate and empower our kids so not only are they not targets, they do not turn into bullies.

What sort of citizen do you want your child to be? It's never too early to teach good citizenship.

Beat the Bullies

Graduation Day

Sunday was a really important day for us as a family. It was our local hospital's special care baby unit's Christmas Party, hosted by the Mayor of Bury. It is held every year, and children are invited usually the Christmas in the year following their discharge, so last year we weren't invited.

I was so excited to attend this year's party for many reasons. Our unit is still earmarked for closure, although now the decision has been postponed until February, so this year may well have been the last party. Also for me, it marked the end of Joseph's journey as a tiny, premature neonate, he has graduated and has joined the other children at the party.

I learned from one of the organisers that 300 babies pass through the unit every year, which is an amazing number, as the unit itself is rather small, 10 beds, with a couple of other rooms that can be used as well. That's a lot of babies. And of all the children gathered at the party, you would just never know that any of them had occupied one of these special beds.

Joseph looked a picture in his Ted Baker outfit, which I will get a picture of at some point! He enjoyed chasing the disco lights on the floor, doing the hokey cokey, and his most favourite activitiy in the whole world, eating cake!

Santa came, and he was very kind, and brought Joseph a Zingzilla microphone! Oh how we love the Zingzillas!

And now, I feel, that even if we never go to one of these parties again (but I do hope that they can continue on whether the unit closes or not), that our work is done.

It might have just been a kiddies Christmas party, but to me, it was a graduation ceremony.

Congratulations my little man, you have passed with flying colours!

Edward's First Christmas

I've mentioned many times that the Bliss charity has been instrumental in teaching me how to be a mum to a premature baby. One of the mothers who has inspired me, helped me, and encouraged me is Lizzie. During the run up to Christmas I thought it was poignant to share stories of NICU at Christmas. Here is Lizzie, Jon and Edward's story of their first Christmas as a family. 

Christmas Day 2005 was like none other. We knew it would be special: I was supposed to be exactly 35 weeks pregnant with our first child. As it was, however, Edward had been born 10.5 weeks earlier at just 24 weeks and 4 days gestation. Those first hours, days and weeks dragged by in a fearful haze as we didn’t dare hope that Edward could be strong enough to hang on. He had been born dangerously early. The one glimmer of hope was his weight – 1lb 9oz or 725g – very tiny, but very respectable for such an early baby.

Christmas became an important milestone for me and my husband Jon. We knew that, two and a half months after his birth, we should by then have some idea of what the future would hold. Before Edward’s untimely birth we had originally intended to spend the day with my parents, but all plans were shelved and Christmas was officially cancelled. In our heads it became a day of huge significance, because if he was still with us by then, then maybe – just maybe – we would be lucky enough to keep him. We never discussed these thoughts between us, both afraid that if we verbalised our thoughts then somehow we would be jinxed.

We were both so absorbed with every aspect of life in NICU that we barely noticed the run-up to Christmas. We didn’t send a single card; we didn’t buy presents. To us it seemed pointless: the one gift we wanted was a baby who was still alive and was growing healthier and stronger each day. On many days that gift seemed desperately far out of our reach, but as the weeks passed and the many frightening moments became fewer, we both began to believe that we just might get our Christmas gift. On Christmas Eve I dared to go out and buy a Christmas card for Daddy – I was frightened doing it in case something terrible happened before Daddy could receive it. We also plucked up the courage to buy Edward a single small present – a colourful cloth book to put in his incubator. Suddenly in a whimsical moment of hope I decided to dash to Waitrose shortly before it closed and buy up the few items of Christmas food that they had left on the shelves, because things were starting to look more positive, and we could allow ourselves to enjoy a Christmas dinner at home after spending the day with Edward.

One of the key things I remember about Christmas Day was that most of the parents on the unit looked rather blank whenever anyone greeted them with “Merry Christmas”. Although we all knew what day it was, we all had so much more important things to think about and it felt very odd – it wasn’t supposed to just be another normal weekday, but it was to all of us. Edward was still in NICU at the time but was starting to do well – well enough that when the night nurses had secretly dressed all the babies in a Father Christmas outfit and taken photos for personalised Christmas cards, they had been able to include him. His card to us was waiting on the top of the incubator when we walked in. I welled up as soon as I saw the photo of him in his Christmas suit – I have no idea how the nurses made it fit so beautifully because he’d struggled to put on weight and was still well under 3lbs. That photo is one of our most precious possessions and is on display in our home all the time, but also gets included in our Christmas decorations every year!

The nurses had done such a wonderful job decorating each room in the unit, and they were all extra cheerful that day, with Christmas songs playing quietly on the radio in the background. A kind volunteer had managed to get stockings and little presents donated for each baby in there, and we still have Edward’s stocking and cuddly bear now. I must confess that we didn’t keep the hand-knitted cardigan though – I hope I don’t sound ungrateful, but whichever kind soul knitted it, had done it for a baby at least 5 times the size that Edward was and I couldn’t imagine him ever fitting it! I remember actually staring at it in its hugeness and wondering what it was for!

We had a little break at lunchtime and decided to ‘treat’ ourselves in the hospital ‘restaurant’. It was virtually empty, though there was a family sitting not far from us with a very elderly, very frail looking granny who was clearly an inpatient. I remember thinking that this was probably her last Christmas and feeling rather sad for the family. In contrast, I was beginning to feel that this just could be the first of many Christmases for Edward.

Towards the end of our day with him, we were chatting about something and Jon finished the sentence, as we had hundreds of times before, with “....if Edward comes home”. I took a deep breath and dared to say it at last. “He is coming home, isn’t he?” “Yes, he is.” Edward was asleep in his incubator and not available for cuddles, but we had the biggest hug with each other, standing watching him sleep.

Edward moved into the lofty climes of HDU on 2^nd January 2006 and came home to us on 8^th February, on day 120. We were a proper family at last.

NICU Mantras

I have really started to embrace Twitter, its a great place to interact and meet people you never otherwise would have met. I have met this wonderful mummy via another via this lovely mum and Nicu nurse. I met Jenny whilst she was pregnant with triplets. She threatened preterm labour and managed to hang on until 28 weeks. Her three little babies are currently in NICU (neonatal intensive care unit) and doing very well, however they are subject to the usual NICU issues that all premature babies face, little setbacks, various health problems, and just the slow business of growing and learning lifeskills that full term babies take for granted - you know, life skills - like breathing, maintaining body temperature and the all important feeding.

Yesterday, on Twitter Jenny was feeling a little low, post c-section, babies in NICU, expressing (for three!) takes its toll. She mentioned that her mantra was "tomorrow will be better". It got me thinking, what were my mantras in NICU? What were those little snippets that helped me through those long days?

I am the Mummy - I repeated this over and over. It is very hard to feel like a mummy when your baby is kept in a plastic box, doesn't look like a baby and you are not doing normal mummy things. But you are the mummy, very much the mummy and no one, no matter how qualified, how experienced, can do the job you do. However dedicated the professional, they do not, and will not, love your baby. That's your job.

Now is not forever - It is very hard to keep a sense of perspective, especially when you know that your baby is likely to be in hospital until their due date, and that is 3 months away. I remember my sister blogging at the time "she is learning to be a mother to a baby who lives in a hospital". And feeling desperately sad. But it wasn't forever. And now, its just memory, story. It happened, it was real, it hurt, but its over.

The rule of three - One of the things I really struggled with was information, particularly about things that came down to opinion. Every nurse does things differently. And every nurse thinks her way is either the only way, or at the very least the best way. I was told to throw out bags of milk as I had frozen them after being in the fridge for 24 hours. At the time I didn't know how much he was taking so didn't want to freeze them straight away as fresh is better. One nurse said it was fine, the other said it was dangerous. I accepted the second nurse's opinion as gospel and chucked it. Several others subsequently said it was fine. So I then operated a rule of three, if three people said the same thing, I accepted it as truth.

I know my baby best - Although your baby might be in special care, with things happening you don't understand, you have known your baby since it was conceived, and you can still trust your instincts. If you are concerned, speak out. One of the doctors wanted to do a lumbar puncture on my son, because they believed he had an infection. At this time Joseph was on pretty much the full spectrum of prophylactic antibiotics. I made the doctor tell me what indicators Joseph had of infection, and he told me he was having seizures. Now by that time I was spending up to 7 hours a day with him, so I asked him for dates and times. Some of these "seizures" had happened whilst I was there. I was sure it was constipation. It looked to me, to use the local dialect, that Joseph was "thrutching". During these "seizures" he was awake, he was looking at me, and his tummy was tensing. As it turned out, he was constipated, in the next 48 hours he did several poos, and the "seizures" stopped. No need for the lumbar puncture.

You are not alone - When you are going through special care, you can feel desperately lonely. In our case our unit only had room for one long term NICU patient so no one else was going through what I was. However, I found support from unlikely sources. Cleaners, chaplains, one of the maternity doctors who used to lurk outside the unit for a cuddle and a quick catch up, even fellow bus catchers. I met one lady whose son had been in hospital for six months, and she went nearly every day to see him. We would swap notes, and give encouragement. She was in her 70's and her son was 40 and in long term psychiatric care. But I felt a strong affinity with this mummy, who was having very similar experiences to me, the feeling of social isolation, fear of the future, and disconnection from her son. And having to deal with things she didn't always understand.

Its all character building - Sometimes I wondered why this was happening to me. But then I asked myself "why not me", if it has to happen to somebody let it happen to someone who will roll with the punches, who will learn from it, who will come out the other side with a richer character, and an appreciation of the whole experience.

I would never, ever wish having a premature baby on anyone, its hard, its sad, and what the baby goes through in order to survive and thrive is tough. Most mummies cry when their babies have their injections. When Joseph had his injections, I was completely calm, grateful that was all it was.

However, having a premature baby can be exhilirating, watching them grow and develop, and learn, its amazing. So whilst I would not advise going out of one's way to have a premature baby, use the experience, if it is thrown at you, to grow as a person, and importantly as a mummy.

The Hardest Part

Its cold and snowy here at the moment, last night I cheered myself up by looking at how long it is until our trip to Australia in February. 75 sleeps. I was amazed its that close and was thinking how quickly time will fly. Then, a thought crossed my mind. Joseph was in hospital for 76 long sleeps. How slowly that period of time went for me then.

I am not sure many people realise this, but, in the vast majority of hospitals in the UK, you cannot stay in hospital when your baby is in special care. There are no facilities for parents to stay. There is an anomaly, because in paediatric hospitals and untis parents are encouraged and even expected to reside with their child during their admission.

There are lots of difficult things about having  a premature baby. The fear of the unknown, watching your baby go through unspeakable medical procedures, not being able to hold your baby. But for me, the hardest part was not being with my baby at night, leaving in the evening and going home. It was made more poignant that our car park was also where parents parked who were taking their babies home. Day after day I saw excited parents with bouncy babies taking them in their car seats and going home. It was tough. When I caught the bus I deliberately got off at the main entrance so I could avoid that door during the day, when the vast amount of discharges take place.

I was "fortunate" to be ill enough to stay in hospital for the first 7 nights of Joseph's life. It was lovely to be near to him (albeit a floor away) and I could pad down during the night and see him. The visits at 2 or 3 in the morning were my favourite ones, the doctors would be there, but busy between special care, A & E and the children's ward, so sometimes there were only 2 staff on duty. I was left alone to just stare at my gorgeous little baby.

Once I got home, the wheels fell off. I am not sure how much of this was the medication I was on for high blood pressure, normal post pregnancy hormonal imbalance, and how much was immediate post traumatic reaction, but I lost my grip on reality, particularly at night. I woke up my first night at home asking for a nurse to help me get up so I could see my baby. I routinely got up looking for the elevator so that I could go to the unit.

Later on, one horrible night, I had a nightmare. I can deeply recall it. When Joseph was in hospital, I had a self-imposed Google ban. I thought no good could come out of looking up potential problems, if I didn't understand something I'd ask one of the staff, a doctor, ring my GP or ring Bliss.

But this one night, I had the most vivid dream. One of Joseph's doctors had some MRI scans up on a screen, Joseph had a break in the spine at T3/T4 (thoracic spine, the middle of the back) and it looked like a fluid filled tumour. It would mean Joseph would probably not be able to walk, and it accounted for some of his breathing problems. I stood with the doctor trying to digest what this meant. The doctor left the room, and I woke up.

I had tears all down my face, I was shaking, it felt so real. Then, in my muddled state, I thought, maybe it was real, maybe it had happened during the day and I just couldn't remember. I lay in bed, deeply frightened and confused, and had thoughts spinning around my head. So I rung the ward. Fortunately it was one of the senior midwives, who knew my husband's family well, had had pre eclampsia herself, and was very kind and understanding. She listened to me, reassured me that Joseph was fine, and hadn't had an MRI and there certainly were no issues with his spine.

Very kindly, in the morning, one of the doctors did an examination with me present so that I could see there were no problems. But they thanked me for flagging it up. Apparently this is a problem in some premature babies.

Now how did that dream come about? I hadn't read anything, or researched spinal problems. Why was it so detailed? It still sort of haunts me, how my subconcious works.

Before I fell pregnant I was considering doing a degree in nursing, and I went to a talk at the University of Manchester. The lecturer asked us what the most important day in hospital is, from a patient's point of view. I knew the answer, but sat quietly to see what people said. One person said "every day", another said "the day they get a diagnosis", and another said "the day they have their operation".

No the greatest and most important day in the life of a patient (or in this case the patient's mummy) is the day of discharge, the day they finally go home.