I've been thinking a lot lately of the fact that when life runs smooth(er), I find myself not writing so much.  As though happy times were less worthy of recording than rougher times.  And I was thinking that I must try and redress this if only as a way of retraining my mind to find the noteworthy and funny in happenings.

So tonight, I am sat in my rather lovely and cosy sitting room watching three grown-ups and two animals make sense of the new.  It's quite funny to see how the humans are almost more aware and cautious of the two animals' welfare than each is of their own.

One animal is Nimbus, our cat.  A fairly large but placid specimen, Nimbus runs away from trouble rather than facing it and much prefers his own company to that of others.  To his credit, however, he does clearly sense distress in his people, and will often be found on the bed of the child who is most in need.

The other animal in question is Sox, my in-laws' new dog.  Compared to Nimbus' 5 years, Sox is only 7 months old.  A funny little mongrel, she is small and black with white Sox.  She is full of energy, very loveable and clearly a bright sparky little thing.

How frustrating that words fail me!!  The "big"ness of Nimbus, the new noises that emanated from each of their throats.  Even sweeter and funnier, the concern of all humans around them that Sox should be kept held of, that Nimbus should get the message that this is indeed his territory.  It was all lovely, and funny and endearing!  And stirs up thoughts as yet unclear concerning relationships in general... I will have to keep my heart and mind open and wait for them to crystalise.

Nimbus having left the house earlier has since come back to eat.  He is happy in the knowledge tha tthe dog will not go upstairs.  After some hilarious staring, Nimbus has now changed tack.  He saunters into the sitting room elegantly, looking at Sox as if to say, "You, thing, you are held.  I, Nimbus, cat, am not.  I will now sit calmly in front of you and lick my nuggets (Tom's preferred word for his privates!).  I, Nimbus, cat, am not afraid of you."

Sox, being a dog and a young one at that has kowtowed quite happily.  It has to be said, however, that when Nick looked at the cat and declared that Nimbus would clearly be quite happy with a dog in the house, you could have seen sparks fly from that cat's eyes!

With a giggle in my eyes, I bid you all a goodnight, and wish you the words to share the good as well as the bad.

I newly have an amazing woman as a friend on Facebook.  A little pocket of the world is filling for me with these awesome girls, ladies, warriors, women.  I only wish that that little pocket were closer!

So the other day this lady who is so often full of grace and patience confessed to having lost her temper with her children.  Her grief and shame bled off the screen and she pre-empted our comments:  that such a thing is only human, that the children would shrug it off, that things would be better the following day... that maybe she had been provoked and that children need to know and understand that they have gone too far.  For once I did not comment... I have so many thoughts whirling around my mind concerning anger that I wanted her words to allow them to make their way onto paper.  I also wanted to respect her ability to share a sad moment with us and respect her request for quiet.

That same respect for her compells me to try and spin the jumble of fibres in my mind into some kind of yarn.  I cannot hope for a beautiful result that might make a delicate pashmina, but if my thought yarn could result in some soft socks to warm cold toes.

For as far back as I can remember, I have feared, even dreaded my anger.  The loss of control that I felt could overcome me and hurt others was enough in itself to enable me to reign in those emotions and carry on.  I was far from being a perfect little girl, but by and large I was quiet.  I remember clearly ensuring that I must not hurt my sister, however awful she was because I would either get into trouble or lose control and really hurt her.  The howls that followed any little scrap were testament to her understanding of a parent's response to cries ("Benedicte!  Leave your sister alone!!!").

As I write this now, I am so careful to choose my words.  I am slowly coming to understand and realise that anger is not a "negative" emotion.  That emotions are simply that... feelings that well up inside us as a reaction to circumstance, thoughts, the people around us that we care about.  For several years now, I repeat to myself that "behaviour is communication" when I witness and endure the awesome anger and sadness of three children who daily wrestle with a life that most adults would struggle to cope with.

With a lot of help from friends, therapy and the biggest teacher of all: life, the idea that emotions are as normal and neutral in intention as a heart that beats or a leg that rears up in response to a reflex point being tapped has begun to seat itself deep into my soul.

Sadness has been easiest for me.  As painful as sadness can be, I can hold it in me and keep it safe.  I can allow myself that emotion and recognise that it is a part of me, that I am allowed to feel it in all its intensity and that I can also find a place for it deep inside me and continue to live in its company while not being overwhelmed by it.  Anger is much harder.

While sadness lives inside me, anger wants out.  Anger held become so destructive as to leave its host quite emptied and weakened.  By the time my anger had done with me, I no longer recognised it as such.  It mutated, changed, altered to something quite unlike its fiery beginning.  By the time I allowed myself to fall of the cliff that was my life, it was like a stalker.  Quiet, so close to patience because of my life with my children, that it took me a long time to realise that anger had a very big part to play in that fall.  Not least because anger had such a big part to play in the fact that I lived my life as if holding on to the edge of a cliff by my fingertips, always refusing to give up and let go.

I still do not know how to manage anger, how to live with it and let it go, transformed.  But now I can recognise it, and if I do not welcome it, I at least acknowledge the validity of its existence.

That said, I have clear social and emotional boundaries and I am able to contain any anger in situations where outbursts would be unacceptable.  Nor do I feel it appropriate to release that anger in reaction to a child's misdemeanour.  After all, "behaviour is communication".  If my child's behaviour is challenging, then in nearly all cases it is because that child has been unable to communicate a need, or understand another.

My three children all have great communication difficulties.  They also lack those taboos that most of us grow up with: the fear of adults and authority, the "knowledge" that some things simply cannot be said or done, the shock that comes when a boundary is crossed without permission.

My children have also lived lives filled with pain, both emotional and physical.  They have had to fight for attention more than most due to extreme circumstance.  A little boy with cancer who took his mother away from his brother and sister, whose mother could not be by his bedside each day he was in hospital.  A little girl who learned to wash and dress herself because Mummy had to be at hospital or managing big brother's major meltdowns.  Another little boy who was regularly overwhelmed by life, but whose mother was constantly in and out of hospital with baby brother.

Anger thrives in circumstances such as these.  Indeed why should it not?

And anger in circumstances such as these is a violent and untamed monster.  Shouts and screams are at some point joined by name calling and gestures mimicking attack.  And eventually, when circumstances such as these do not subside, shouts and screams are not enough and physical attack and violence pour out.

Many call out "unacceptable" and "he/she must not be allowed to". 

I ask you, who is most at risk in these attacks?  Mummy who is bruised and battered both on the outside and in her heart?  Or that child who has been overtaken by the monster of  anger?

Zack frequently was unaware of such incidents having occured.  He once recalled one saying, "everything went dark.  I could just feel how angry I was and how I wanted to hurt you.  Everything was black, even the sky was black, but I could see.  I could see you, but not with my eyes."

Kesia seems at times to feel the anguish of hurting me even as she is launching herself at me.

Tom says simply, "I can't help it".

These are not bad children.  Nor is their anger bad.  For Zack, anger at that time came from the terror of not knowing what lay ahead for him at a time when I could not homeschool anymore and we simply did not know what would happen.  Kesia sees her world change at a pace that she cannot follow, and her confusion eventually overwhelms her.  Then the slightest mishap leads to anger.  Tom lives with the increasing understanding that he is "not like",  without any understanding as to why.  Sadness is a big presence in his life, so big that it translates to anger.

My question to the universe, the world, you is this: if we are together in the feeling that anger is a legitimate emotion and that repressing that anger is not a solution, how can we release that anger?  And how can I help my chilren release theirs without hurting themselves or others?

This is my yarn so far.  I am not a spinner... I love, admire and respect the work of spinners of all kinds who make such beautiful yarn.  My yarn today is clumpy and irregular, I know this.

I've sat and started to write here several times for the last few months.   Each time, I open up a little text box, and there are so many words, so many thoughts and feelings that all of a sudden a big blank happens between my head and my fingers...
I have updates to do... In particular, I owe Post Pals an update...  So I must pay that debt first, and hope that it gets me started.

Every time I write an update I expect things to quieten down.  I feel so humbled each time I open the door to find more post for my kiddies - even me (thank you Wendy for the oh so regular hand made cards).  I do not keep track well enough of the beautiful cards and letters people from all over the world and for that I am so sorry.  Often, I find pen and paper and resolve to keep note of you all.  So far, I have failed miserably, and can only convey in these updates the smiles you bring into my home.  Words are too few and too poor to express how I feel about this.

As ever, life continues to be a journey of ups and downs and unexpected pot-holes... quite a bumpy road this life of mine! 
Oh my glory, I've just realised that I have not updated since March!!!

The big news for Tom is that we attempted to make do without tube feeding.  He became very unwell during the first half of the summer term, with a lot of vomiting that I haven't seen for years.  School was taking it all out of him, and between the exhaustion, vomiting and terrible temper, I became quite concerned.  I did get an emergency appointment with his endocrinologist as the growth hormone treatment seemed the only new element.  It was a good appointment - one of those doctors who listens to me and with whom I can have adult conversations.

On the growth hormone front, the treatment is working really well.  Tom's growth has been exceptional.  Possibly this is the source of the problem... Despite this fantastic growth, and true bravery from a little boy who really does not like needles, I have been utterly unable to increase his food intake, be it through the tube or orally.  So... more growth, but no more food.  Kind of like trying to run a big truck on the fuel tank of a fiesta...

My concern was that the GH was affecting his heart - so we concluded that checking his heart before continuing would be wise.  I'm still waiting for the appointment, but other things have taken my attention, so I am waiting rather than chasing.  The plan is to start again, but at half the dose to see how he does.

The issue of tube feeding reared its ugly head once more at that appointment - how unusual it is to have a child of Tom's age be tube fed.  Especially without clear cause.

So I went home, to a half term house with Zack and Kesia in full-blown stress mode: shouting, crying, screaming, running away from home.  Not to mention Tom refusing food, both mouth and tube.  And I had pretty much had enough.  Of making feed, of having to fight with Tom each feed time, of doctors looking at me as though I were the one insisting on tube feeding needlessly.  So I stopped.

I explained to Tom that we were going to see how well he could eat.  And I watched.

Long, painful 4weeks short...

He did SO well.  At first.  The first three weeks went well.  He didn't eat loads, but it was regular, and he was drinking good amounts of milk.  He even gained a little weight each week.  And then, week 4, he just "couldn't" eat anymore.  I can't explain it differently.  He just wasn't hungry at all, even giving him access to the kitchen at will was no good.  He lost 5% of his body weight that week.

As much as I try to keep myself together, my emotions run very high where Tom and food are concerned.  Watching him lose weight was hard.  On the one hand, I have to show doctors that I am doing the best I can to get him off the tube.  On the other, I have to be answerable to family members who see Tom getting skinny and pale and listless.

End of week 4 we started night feeds again.  Tom chose to do that rather than day feeds.

End of week 5 I had to start full feeds.

I've had to take him to the optician - he had some strange shadows on the white of his eye.  She confirmed that it is a sign of malnutrition.

We're back on track.  It's taking time to get him back to his version of full health.  And it's taking time for my heart to mend.

I will write the rest a little later...

My online world is so full, so varied, so fulfilling that I sometimes forget where I have last spoken, visited, written.
My outside world is so challenging, so filled with time slots already promised weeks ahead of time, so ... lived, that I sometimes forget that you have not lived it with me, that you have merely waited for news, patiently and somtimes not so patiently.
My inner world is growing.  Still an infant, still vulnerable and fragile, yet it exists where a year ago there was the chaos and pain of birth.

At the beginning of January, we were filled with hope for a quieter, calmer year.  Zack had been home for Christmas more successfully than ever before, Kesia was in therapy and Tom was doing well despite a small operation on the horizon.

Thanks to Maman, Nick and I were able to have a holiday together - a wonderful week at Center Parcs.  We found each other again - the things about the other that made us best friends, that made love grow strongly from the roots up through to the shoots, branches, leaves.  Words are poor expressions of the kind of gratitude we still feel towards her and Papa, who tolerated the absence of his own love and the silence of his home in order to give us the time and space to "be".

And here we are, in June.  Slightly breathless, dizzy from the turbulence of life, but living nevertheless.  And despite the pain and sadness that still pervades, I think that we are living well.

February proved to be a little more exciting than we had expected, as Tom's operation was followed by a nasty infection.  He is now doing well, and thrilled that "my balls are still here" each evening!  Growth hormone treatment has been effective so far, but has caused some vomiting it seems.  So we are enjoying a hiatus while we do some important checking.  In the last few days, I have felt the strength to trust Tom and myself with his eating, and have not used the tube at all.  I do not know how long this will last, and find myself accepting that lack of knowledge... a strange feeling for me, but again a feeling that I am in small small ways, learning to live well.

Zack has made far reaching progress at school.  He is truly happy there, and has made his peace with class work - to a great extent!  I am so proud to say that he sat his SATS tests, only leaving one unfinished.  He is tolerating new students much better and is able to bring back much of what he has learned when he comes home.  Nick and I, on the other hand, are enjoying the freedom of holidays - knowing that it is alright to let him enjoy his games and television, that holidays are in great part about letting go of the structure and strictures of school.

Kesia has taken centre stage this year.  It is increasingly clear that she has Asperger's syndrome, and that she finds the world of communication even harder than Zack does.  Her therapy has not yielded the results we were hoping for, and Nick and I have had to start the fight anew - for recognition, assessment, diagnosis and eventually educational support.  We are all so lucky to have the Greville School behind us.  She receives constant and nurturing support there, but we need to look ahead to secondary school which is increasingly looking very daunting for her.
She writes the most wonderful stories, and her author's voice is quite unique and musical.  She has also taken it upon herself to learn to play the piano.  Using my old piano book, she has been teaching herself (she dislikes and rejects any teaching) and is playing beautifully.  With the dedication and perserverance that any parent of a child with ASD will recognise, she is working through the book, moving on to the next piece only when the current one has been mastered.  I try to help her without her realising - what a wonderful opportunity to stretch my teaching muscles!

Me!  Is becoming.  And a lot of the time, that is enough.

I'm aware I haven't written anything for a while.  We've had Zack at home for the last ten days or so and this has raised all the usual suspects: sadness, exhaustion, frustration, fear, despair...  Monsters all.
I don't have the energy to sift through the jumble and make sense of where we are, but I did find an amazing poster that I have made my profile picture on facebook.  it is a ransom note:

We have your son (it reads).  We are destroying his ability for social interaction and driving him into a life of complete isolation.
It's up to you now.

Asperger Syndrome.

It encapsulates how I feel.  And I have done all I can.  School is the best we can offer him to fight back and be himself within this condition.  But at home, ...
Well, let's say that things aren't good, and I find hope a preciously rare commodity.

Anyway, as I wrote up top, I'm simply not up to, or ready to make sense of it all.  I hope to be able to before Tuesday so that I may send some notes to school, but I suspect we will need a face to face talk with school staff to know how to move forward.

Right now he is at his grandparents and I have just had a nice chat with him on the phone.  Happy.  Very obsessed by his current topics: lego, Scratch (programming animations).  Totally oblivious to the pain and hurt he left behind.

Just a reminder!!  I'm cutting my hair off in February to fundraise and help make a wig for a child suffering hair loss.  Go to here for more details!!!

Zack is back home for a long half term, and with him come the questions, doubts, stresses, anxieties and suspense that mould our experience of Asperger syndrome.

Every utterance is preceded by a host of thoughts:  how is he right now?  Will he hear a question or an insult?  Is he busy, should I wait?  How shall I phrase my thought?  Do I absolutely need to ask him? 

Some will no doubt suggest that I simply talk, that I stop trying to analyse the smallest interaction.  To those I answer that my experience has led me to this point.  Years of meltdowns, rages, fits of despair, aggression, defensiveness, tears, violence, hurt as reactions to the most normal of words.  This is my experience.  And as most humans adapt to their circumstance, so have I.  The questions that I talk of happen in the flicker of an eyelid, thought not even frozen in words.  I approach Zack the way I would approach a wary and wild animal in many respects.

To this heady mix of a decade's life with Asperger syndrome, I have to add the experience of someone who has been abused.  That is so so hard to write.  But there is a real need to acknowledge this I think if I am to move forward, and if Zack is to manage relationships better.  So one of my priorities now is to keep myself safe, not merely him (or my other children).  And since Zack, apart from being my beloved little boy, is also the one who inflicts the abuse, I tread a tightrope between keeping myself away from harm and being a mother.

With Zack's return home, Nick and I have both seen our children slip into an alternative world.  One in which each of them plays a predetermined character.  One in which a script must be followed.  Sadly, this movie is one that we have watched over and over and over again.  It never has a happy ending.

So we try to steer the family into different directions, but the strength of this trio is remarkable.  A few days ago, I likened them to an atom, and I'm drawn once more to this analogy.  It took scientists so much energy to split the atom.........  the bond between protons, neutrons and electrons is so strong that efforts to break it will no doubt have cataclysmic consequences.

Inevitably, I am back to a conclusion previously visited.  Zack, bless him, whom we love and cherish does not allow us to live and thrive when he is with us.  But when he leaves, a great hole opens in our hearts and our lives.  We cannot make our peace with such a bereavement because every few weeks, he comes back.  With his return comes the excitement of seeing him again, the hope of reaching him, the bated breath of maybe enjoying each other...

So we begin with the nucleus, which is made up of two types of particles:  the proton and the nucleus which themselves are made up of curious particles called quarks (which behave very strangely).

You may not have heard of their alternative names:  Zack and Kesia.

Then we have the whizzing electron, flying around in orbit of the nucleus, but never touching or altering it.  The electron is itself an elemental particle, and cannot be fur

PostPals, as most of you should know by now, is a small charity which does great work by encouraging everyday folk to do a simple thing - send a card to a sick child (and or their siblings).  It seems like a tiny gesture, and yet as a parent of children with health problems I can only try to say how important that gesture is.  At the end of the day, when Tom is really tired from school and Kesia is struggling to be the "good" sister, the sight of a card or letter (even occasionally parcel) turns what could be a very long, miserable evening into one full of smiles.

And all they ask of me is that I update all those wonderful people...  I missed my August update, and all of a sudden here is the September one! 

I'm going to summarise the summer.  I think that the reason I didn't update August is that it felt very long, very sad and sharing that was just too hard.  I also had to keep a detailed account for Zack's school and that just emptied me.  We got through it without major incidents.  I was able to avoid any hospital appointments with Tom, and Cherry Trees ( www.cherry-trees.co.uk ) and Challengers ( www.disability-challengers.org ) made life possible.

And so into September!!!

First, September was Childhood Cancer Awareness month.  In my world that means a lot.  Many of my Facebook friends are personally affected by childhood cancer, as I have been and continue to be despite Tom's good health in that regard.  In the US, 46 children are diagnosed with cancer each day.  Here in the UK, it's 6.  6 babies every day, whose parents are told, "Your baby has cancer".  That's not rare.  It's simply not talked about.

Most of these children (amazing, and normal at the same time) will undergo chemotherapy and lose their hair.  They take this with enormous fortitude, as they do all the awful side effects of cancer treatment.  And so last month, 46 Mommas in the states got together to raise money, and to raise awareness!  With many leading television channels in attendance they shaved their heads!  What they did is awesome, and I am full of wonder and love for them. www.46mommas.com

I am not that brave, but I want to do something!!!  Why am I so vain about my hair - goodness knows!  but one of those fabulous cancer mums suggested something that I can do, that feels big to me, and that I hope can help a child somewhere!  I have very long hair, and what I am hoping to do is cut it all off to donate.  My hope is that my pony tail will contribut to making a wig for a child suffering from hair loss.  Be it through cancer treatment or something else.  My secret hope is that my hair could be part of a "happy wig" - maybe pink or glittery... something a little special for a special girl.  So I'm looking, and I hope to get something sorted out sooner rather than later, especially in terms of fundraising.  Again, I'm not sure where the money will go - but it needs to be helping raise awareness of childhood cancer.  That's where my heart is.

Phew!  Now on to update you all about my Tom!!

We've had a busy month. Tom started school in the juniors which has been a tough transition.  School have on the whole been really good, but it's difficult to remember how hard he finds schoolwork when he engages so readily in the classroom.  He's been having a lot of nightmares and not been happy about going to school so I explored the possibility of special school.  I'm really happy to report that as a result, the local special school is going to be working closely in partnership with the Greville.  They are hoping to exchange students on a regular basis, exchange teaching methods and ideas which will directly help Tom with his literacy.  What's more, they are offering to give Tom some hydrotherapy which is fantastic as we are battling pain during the day as well as at night now.

Tom's also started riding with the RDA (www.rda.org.uk) which he is loving and which I hope will strengthen him enough to alleviate some of that pain.

Feeding is a nightmare right now and I'm trying very hard not to let it bother me too much.  The only thing he wants to eat is chips and with Kesia at home it's very hard to justify making chips daily, only for him.  Thank goodness once again for the tube, and for the blenderized diet!  This week has been dominated by sardines and spinach, and he is looking nice and healthy!  Small oily fish, that's what I say!

We had some really good news last week as we went to Tom's yearly cardiology check up.  He was fantastic about the ECHO, and Dr. Derrick is very happy with the state of his heart.  As he says, his pulmonary valve is no longer there, so there is leakage, but his heart is doing really well, much the same as last year.  That's really good news, as surgery is therefore not on the horizon yet.  Long may that last!!

We also saw the haemophilia doctor while we were there - another check up - who was very concerned to learn that a minor surgery was planned for Tom at our local hospital.  She told me that although Tom was probably going to be fine, his bleeding disorder is such that the local hospital does not have the resources to deal with a possible bleed.  I have to say, I'm quite pleased that this will now be done at GOSH because the local team had not given the bleeding issues any thought - I had had to remind them.  It's nothing huge - Tom just needs his man bits to be brought down where they belong!!  Again something I've been keeping an eye on for five years, knowing that it is a common issue in Noonan syndrome.  At least it's getting dealt with now!

In other news, Kesia has started psychotherapy and seems to be doing well on it..  I'm tired as it takes a lot of time in the week but happy to be doing something proactive for her.  She had a crazy week at the end of September when she attended a glitzy ceremony to collect her WellChild Award (for Caring Child) which I think will have left her with some amazing memories.  it was truly moving to be able to focus so much time, appreciation and love on her and her alone.

One last piece of big news for those of you still reading this epic!!  Together with a few friends, we are launching a new support group for people affected by Noonan Syndrome.  It is called Noonan UK, and is a chapter of TNSSG ( www.noonan-syndrome.org ) who provide such amazing support in the states.  We have a facebook page of the same name, and will eventually look to becoming a charity once we are raising enough money.  We've already had contact from new families and are hoping to get UK families together very soon.

Thank you all for those wonderful cards... Wendy whose homemade card are stunning, Dottie the dalmation who provides giggles galore, Jane and Percy as always, and all those of you who have sent cards, letters and gifts.

Thank you PostPals!

for those of you who weren't able to watch last week, and for posterity, this is Kesia's appearance on the morning tv show on ITV.  With Tom looking positively at home and Mummy made up to