Mark Brown, of Special Help 4 Special Needs

I originally wrote this post in my very first blog,”The Goings-on of my little world” , in June 2009. Since then, Mark has continued affecting more and more families like mine in life-changing positive ways. He is no longer an NHS nurse, but works as an independent special needs advisor, and I am so proud to share that a new centre to help these families will soon be opened as part of his work. He continues to be my guardian angel, because that is who he is. Regardless that I am no longer officially on his books, he continues to see as as one of “his families”. His kindness, courage, wisdom and compassion know no bounds. He ceaselessly inspires and amazes me, and I have no way to truly convey my gratitude to how he helped our family.

The Special Help 4 Special Needs Centre will open on October 27th 2018  at 1pm. The address is 195 Godstone Road, Whyteleafe CR3 0EL.

If you are widely known on the internet and in the SEND community, please share this far and wide. If you have contacts in the local or national press, likewise. Let’s try and finally get Mark the recognition and support he so richly deserves.

Mark… thank you

When I was growing up, my parents told me I had a guardian angel. Always at my side, he was there to protect me in bad times, rejoice in good times. I have to say, he was always rather too silent for my taste, and it is possibly to my discredit that I never felt him at work.

And then earlier this year I met a real, solid, guardian angel. He does not have wings, and he will be the first to say that he does not really fit the “angelic” description. But he has been my guardian angel in the last few months more than I could ever have hoped or prayed for. He has laughed with me in good times, held my hand in bad times, and when I fell a great height into a pit of despair and hopelessness, he caught me. He refused to drop me, and made me believe that I could get up again, stand straight and continue to fight the battles that were coming my way.

My guardian angel’s name is Mark Brown.

Many people in the “disabled” community know him, either because he comes into their homes to help them help their children, or because they hear him talk at meetings. The sex education talk tickled many of us mothers whose children do not understand the world in a conventional manner – no space for innuendos and subtleties!!!

The outreach teachers from various special schools know him well, as do the consultants at Epsom hospital. The question on everyone’s lips at the end of his talks is “How can we get referred to you?”.

Mark is an unsung hero. I and my little horde are known as one of “his families”. He cares for us with passion and professionalism, and raises the nursing profession to its highest level.

To my shame, and no doubt that of others, I have been so caught up in the difficulties of life that I have taken his help for granted these past few months. And I fear that the families he helps are all caught up in troubling, emotional and exhausting lives that leave little time to shout across the hilltops, “This nurse is my life raft! He makes it possible to live.”

To a small thank you, Mark only replies, “It’s my job.”.

I want to shout in the street, in the offices of bureaucrats everywhere in the NHS and other public services:

“Look at this man. Look at the dedication he pours into his work every single day. Look at the difference he makes to so many lives today, tomorrow and for the rest of their lives. Watch him with a child who does not know how to communicate. See how he enters their world, at their own pace, taking the time to find the special language that will move them forward.

See the care with which he gently pulls a family together, finding the weak spots others have missed. See the smile on a sister’s face as she realises she too can have some help.

Hear his honesty. Listen to him speak to parents about the future, one they never wanted to face but which must be dealt with. Hear him list the options, tell the optimism within the suddenly restricted world these parents dread.

Call him on the phone. Hear him answer, his voice always calm, always caring. See him move, drive, arrive to help. Watch him knock and enter, calling out a bright, “Hello!”, bringing the sunshine of hope along with him.

See him watch, and listen and wait for the tears to stop. Then see him pick up the telephone, and talk and talk until the men and women behind their desks agree to give the help. See him make a cup of tea, calm an autistic child and return to Mum, waiting for the storm to pass a little.

Follow him one day, to catch a glimpse of what he does. Follow him two days, to see the families he helps. Follow him a week, and learn how much he counts.

Then ask: why did we not know him before? What can we do to help him? How can we recognise the value of this man, his work, his time?”

Mark Brown. In his own words, a nurse. His work is with children and adults with learning disabilities. He is absolutely a professional.

Mark Brown. In the words of many of “his families”, a guardian angel. His work is with our children, disabled but no less human, no less worthwhile. His commitment to our children extends to our families, because “what is a child without his family?”. And so his work is with us, through the tears and the laughter, the bad times and the good. He cares. He is absolutely a Nurse.

Specialist schools are more than parking places

photo by Robert Rickhoff

Special schools are not mere parking places for children who do not fit the mould our educational system seeks to fill.

In fact, language is changing a little. Five years ago, we spoke of special schools. Now, they are known as specialist schools. It’s a tiny change, and then again it’s huge. As words do, the word “special” has become derogatory, and needs updating somewhat. So our children are now more and more referred to as having additional needs rather than special needs. As much as we may resent it, semantics are often more important than we would like.

My son has been in a specialist school for several years now. His teachers, care staff and us as his parents have worked solidly as a team to help him grow and develop. The system has no way of measuring the kinds of progress he was making in all the time that he was refusing to attend classes. So it came as only a slight surprise that Authorities paused before agreeing to fund a similar placement for his post-16 education…

Our young man, however, has been given the time, space and support to grow; to develop his emotional brain without which any learning is simply not possible; to develop life skills that allow him to manage the simple day to day aspects of life that just do not come to him instinctively; to become independent in a way that boosts his self-esteem and gives him the ability to move forward. For the last few years, simply getting out of bed has been a huge challenge for him. He has had to manage some emotional upheavals that have left him bereft and apprehensive at the thought of forming new friendships. He has been hemmed into a national curriculum that did not have the flexibility to allow for that growth, but he was surrounded by teachers who were able to bend things enough to allow him to survive.

Against all odds, he sat four exams at GCSE and passed three… a remarkable achievement given his mental health and his struggles with autism.

In September, he made a fresh start at a new college. No younger, annoying kids. No school grounds – his house is an ordinary suburbian house, a mile away from the teaching building. No uniform. No one-size-fits-all timetable. No adults dictating what he can and should not do. The independence and freedom afforded to him and his peers terrify the Authorities… after all, these are vulnerable young people.

Yet…

My son responds best to those who treat him as an equal, as a human being in full rather than a child who must conform “just because”. And he has found himself surrounded by adults who do just that – they consider him a young adult, and listen to him. In a subtle, gentle way that comes from years of experience, they are able to encourage and guide him with huge respect.

He has been there four weeks. He is happy – happier than I have EVER known him. He is attending classes at least three days a week – an improvement that no one could have predicted. He has made a group of acquaintances with whom he is spending time socialising. He is engaging with his teacher and with the adults on house.

This is success beyond measure. It is likely that there will be hiccups along the way… but we are absolutely on the right path to a young man who will be ready to step into the world as an independent young adult in a few years.

What makes this work is the relationship that we carve with his teachers, the care staff. We speak at least once a week, we email progress reports, concerns, celebrations. We listen to him…  We hear what he has to say and we adjust our expectations, our hopes, our demands accordingly.

So a specialist school is not a parking place. It is a school, or college whose physical environment has been carefully considered with its cohort of young people’s needs in mind. It is a community of teachers and adults who have huge collective experience of  a certain group of young people but who, more than anything else, understand that every single one of their students is an individual who must be treated as such. And it is a community that understands that success can only come when the young person is placed firmly at the centre, and surrounded by a team of parents, educators and carers.

When you bring all those factors together, amazing things can happen. I’ve been fortunate enough to find the right specialist school for each of my three children. I’ve worked hard to help the Authorities see why those schools would lead to the best outcome for them. I’ve worked continuously and very hard to ensure that those placements worked as well as they could. My job as a parent of very special children does not stop when they are at school… but with that collaboration..?

With that collaboration come hope, joy, progress. And every now and again, success.

 

Sorry is a little bit like glue…

I’m quite certain that every parent has at some point had dealings with a child whose behaviour is utterly out of order.  I’m equally certain that every parent has at some time or other felt clobbered by their beloved offspring.

I can’t remember a day since Eldest was 10 months old, that one or other of the three of them hasn’t at some point left me feeling clobbered.  I often talk about my patched up heart (this old post sums things up!) but I particularly hate the cuts and bruises that my heart suffers at the hands of my Offspring.

And so, the other day, a Facebook post made me think of a hands on way to try and make a point…

Sweet Girl and I went to the shops this afternoon before Little Man came home from school.  We stopped at the charity shop and chose two beautiful china plates – one that Sweet Girl would love, one that Little Man would desire.  On the way home we popped into another shop to purchase some glue.

Oh, did those children love those plates!!!  “Can we have our dinner using them, Mummy?”, cried Little Man.

No.

They reluctantly followed my instructions, and wrapped the plates in paper, then slipped them into plastic bags…

I brought out the hammer.

And unwillingly, unhappily, they smashed their plates.

Oh yes, I’m that mean.

Little Man was in tears at the sight of the pieces, Sweet Girl was holding back.   They both felt really sorry for the loss of their plates.  We used that “sorry” word a lot.

And I got the glue, and we started to put those pieces back together.

It was tricky – I am not a china plate restorer, and my glue was sufficient for the purposes of the lesson, but not of the “super” variety.

The plates are “whole” once again, but not the same as they were before.

“Sorry” puts pieces back.  Time allows the glue to set.

But once you smash something, it will never be the same again…

Don’t talk to Strangers… but Be Kind to Others???

Yesterday I read a lovely blog post – lovely simply by dint of its honesty.  These blogs are the ones I love to follow – those written by people who are moved to share their thoughts and their stories and who feel the pull of truth on their writing.  Dan in this post found himself writing something that he did not like about himself, and he shared it anyway.  His is an extremely well-followed blog, unlike my little corner of the universe, and people react to him with the vast array of emotions available to the human race.  Some good, some bad, and some tremendously hurtful emotions.

So he answered them today – something I believe no blogger should feel compelled to do, but something that I believe most bloggers feel to be an integral part of this strange craft.  I just read his answer today, and found it truly lovely.  Having shared a darker part of his past yesterday with seemingly no compunction, no concern about how others’ reactions might affect him, he was far far more reticent to share a bright part of that past.  Sometimes it’s harder to talk about something good we did, because we fear the idea that the good deed was a bargain with the universe: “See, Universe, I did a Good thing… now you owe me.”  Doing something good makes us feel a better person, and at immediately guilt can follow – did I do this to feel good, or did I truly do a good thing.  We are now in the realm of a philosophical discussion about altruism.

So here is my story.  About finally having the courage to step out of my comfort zone… or actually, discomfort zone… and doing something I knew to be right.

We are taught from the youngest age, Don’t talk to Strangers.

We are taught from the youngest age, Be king to Others.

We are rarely taught the difference between these Strangers and Others.

Most of us bumble along, being kind to those most like ourselves.  The old man on the bus who mumbles away to himself, possibly carrying a paper bag and looking unkempt?  He remains a Stranger.  Why?  Because we are afraid.

For a long, long time, I have wanted to be Brave.  I see the pain in people’s eyes, I see the dullness in their faces, and I want to Help.  I want to offer a meal, an ear for a talk.  Money leaves me feeling uncomfortable – often because I don’t carry any, more often because I would rather see a hungry person with a fully belly than…???  Fact number one in this tale… I have preconceptions, and I am stuck firmly in my comfortable, judgemental life.  I don’t want that money to be used on drugs or alcohol.  So the reality is that I am not giving that money.  I am holding on to it while it lives in someone else’s pocket.

This dichotomy has always bothered me, and is the reason why I struggle to hand over money to people in the street.

That’s alright – nothing to stop me handing over a coffee, or a sandwich?  Nope.  Nothing at all.  Except fear.  Accompanied, I’m afraid, by excuses.  After all, I have a baby in a pushchair, it’s not reasonable to approach a homeless person.  I’m in a rush today.  What if …???  That’s the big one… what if?

I’m working on it, ever so slowly.  The cans of soup or dog food (none needing a can opener) added to my shop if I have seen a homeless person sat outside the supermarket… that kind of thing.  But if truth be told, too little, too slow.  (Because I’m not as good a person as I’d like to be.)

And then I am a mother.  To three children, all of whom have disabilities in social functioning.  All of them find it far more difficult than their peers to differentiate between Strangers and People I Know.  One would never interact with either population, Two desperately wants to Help both populations, but is terrified of contact with either, and Three happily gets on with Anyone.

Stranger Awareness is what it’s called in grown-up circles.  Stranger Danger is the term used in school.  And it’s apt: in the last four months in our quiet suburban village, there have been three attempted child abductions.

For One and Three, this area is really very straightforward – when out and about, talk to Your People (family members, carers, staff members, people you know), do not talk to Strangers (people you do not know).  For them, this is what is needed right now.

For my glorious Two, the waters are muddying.  She asked me recently, “Mummy, I don’t understand.  People always tell me not to talk to Strangers, but what if the Stranger is hurt?  Shouldn’t I help them?  Mummy it hurts me when someone is hurting, and I really really want to help, but if they are a Stranger, I’m not supposed to?  I hate it Mummy, what should I do?”.

For Two, whose heart flows into her entire being, the pain of someone she can see is Her pain.  Her intellect may remind her of Stranger Danger, but her Heart tells her, Help.  The difficulty comes because she is incapable of determining truth from manipulation.  Other from Stranger.  And while I love her Heart, she is also still a very little girl, and very vulnerable.  And as much as I hate to close her Heart at all, I need to protect her, and I need to teach her to decide who is Other and who is Stranger… 

A couple of weeks ago, Darling Man and I took Eldest to London.  A lovely day was had by all, though the two boys returned to the station hobbling and moaning about their feet!!  We got on to the train, all smiles… a happy family having experienced a happy family outing (oh my, did I ever think that would happen!!!).  And suddenly I overheard a lady crying on her mobile phone.  I had noticed her sitting down, without more notice than I usually give to Others on the train.  Yet here she was, clearly struggling to contain her emotions, clearly in distress.

My Heart wanted to help.

My Brain went into overdrive, analysing the situation – all of which happened in about one minute.

• She was clearly an Other, not a Stranger – well dressed, on a train obviously with a ticket, just a nice lady upset.  And yes, my Brain is Judgemental, especially in analysis mode… not really something I’m proud of in this kind of instance, and yet probably necessary to most decision making.  So approaching her posed absolutely no threat to me (or my child sitting with me).
• Darling Man was with me, so if I approached her, I need not even tell Eldest – he did not need me.
• Would I be helping if I went to see her?  That was a big one.  To intrude or not?  Would she want her pain and distress to be acknowledged, or was she hoping it was going unnoticed?

Truly, that last point was my biggest if not only hurdle.  And so easily, I could have chosen the easy option.  She was trying to control those tears, she must surely want to be left alone.  At the same time, her pain and hurt were screaming at me.

And I did find inside me to be a little Brave.  To listen to my Heart a little more than my Brain.  I stood, walked to her seat and leaned over to ask quietly, “Are you alright, can I help in any way?”.

She was a little “british” and tried to wave off all that pain, but her eyes were saying, “stay!”.  So I asked her, “would you like me to sit with you?”.  I suspect her brain started listing off the Other vs Stranger debate… and let’s face it, I’m a pretty safe bet: under 5 feet tall, with a slightly mad flowery dress, but nothing to make you run.  Relief flooded her body; her shoulders dropped an inch or so; her mouth curved into a smile; a few tears escaped down her cheek; she said yes please.

We had a lovely chat until I had to leave.  I did ask her if she would like me to continue with her, but she had calmed down enough to feel safe alone, knowing that someone was meeting her at her station.  I met an Other, whose name I will never know.  I learnt her life, which sparkles.  A life with Happies and Sads, Ups and Downs, a sparkly life like so many others.  And in that little moment of pain, I was able to sit with her and wait for the pain to pass.

I had no plans to share this here.  It was a Good thing, one of the few times my Heart led me past ingrained fear of Strangers towards kindness to Others.  And it was not done for pats on the back or congratulations.  It was simply the right thing to do.  But then I read Dan’s post (click on the link up above if you haven’t already), and I thought… he shared a moment of “not being Good”.  It’s not that simple – he did what the vast majority of us would have done.  And he was clobbered for that moment.  I love that as part of his response he dared to share a moment of being Good (I’d like a super capital letter there), because that is as much a part of his Being as the moment when, in his words, he made the wrong decision.

So a little, counter-intuitive part of me is daring to share a moment of making the right decision.  That, and just to put out there in the universe that while there may well be Strangers in our world, there are also Others.

Celebrations on my birthday…

I don’t quite know when the pressure of anchoring Celebration to specific dates and days became a source of intense and traumatic pressure.

I do know it is closely linked with my lovely Offspring and their difficulty in coping with changes of routine.  Eldest’s first birthday is best described in terms of sadness and tears rather than giggles and cake.  His birthday falls two days after Christmas, and the little boy was already rather overwhelmed with presents and the general “otherness” of the day.  Opening more presents, coping with more smiling adults, and another day of “otherness” in routine was simply too much, and he cried, and cried.

My initial instinct that a due date of Christmas Day necessitates an “alternative” birthday was confirmed in that experience.  Since then, both Eldest and Sweet Girl celebrate their half birthdays in June as a main celebration.  The “birth” day is marked with a small cake and cards, and much much love, but presents and parties come in the summer.

As time has passed, I have watched these Days approach with increasing dread.  The pressure to have that one perfect day, to order, is just too much.

I live, well I try to live, in the now.  Each emotion I feel, or those I love feel is as valid as the next, and actually as the old song goes, “it’s my birthday and I’ll cry if I want to”.  If I feel sad, should I not cry simply because custom dictates I must be happy?  (Oh… I haven’t cried, nor felt the need today – just saying!!)

The true joys of life parenting children with special needs is that the little joys inherent in every child’s life are celebrated in their moments.  Each time Eldest comes to hug me, I relive the utter joy of his first hug, aged 2.  He is now 13 years old, and still every single hug is a source of immense joy and gratitude.

Each time Sweet Girl feels happy is a cause for celebration.  We mark the moment by talking of it, by enjoying that wonderful emotion.  No pressure, we both know it may not last and it cannot be simply replicated… it simply is, and in that being comes wonder at simple happiness.

Each time Little Man reads a little book and enjoys it, we are filled with glee!  He did it, he deciphered a story and enjoyed it!!  Each hurdle reached is a source of quiet celebration, each hurdle overcome brings with it immense pride and a determination to seek out the next one.

Do I document each of these moments?  No.. I would love to, but the celebration is so intense, so “present” that getting the camera out, or stopping to find a “way” to mark the occasion, would interrupt the celebrating itself.

And in the smallness of these moments, they are so numerous that marking and documenting them is simply unmanageable in the business of living.

I celebrate.

To the naked eye, I shy away from celebrations, I tuck myself away in the comfort of routine and sameness.

That routine and sameness gives us all a sense of safety that we desperately need.  But make no mistake: in that sameness and routine, I find my celebrations, and my hope is to make life itself a celebration.

Each year in September, or October, or November, I hope to find the courage to break with traditions imposed on me by the outside world and convention and do away with Christmas Day.  I want to simplify it (I do love more and more the home made gifts, and yearn for far fewer gifts received more preciously), and also in some way to lengthen it.  I want to wake up one morning, notice that all the children and Darling Man are happy and relaxed and decide: Today is Christmas!  Just because we are all ready for such a day and days like Today are rare.  We simply cannot produce that kind of togetherness to order on the 25th of December, just because society tells us: this is the day you should be happy together.

I haven’t found that courage yet, but each year I get a little closer.  I suspect in the future, not too far from now, we will have a family confab, and decide how “we” will celebrate.

Similarly each year around June, the stresses of celebration perk up.  Birthdays, parties, gifts, the intricacies of friendships in a world of autism and disability all combine to make Birthday a difficult day.  How to mark the important (?) passage of time?  Is it important to us, to the children, or is it simply important because everyone else says it is…  Certainly there is something wrong if we continue to mark these “special days” in spite of our emotions.  I do not want to celebrate a birthday if the birthday boy or girl is unhappy – far better to accept that today is an unhappy one, and celebrate another day.

Today is my birthday.  I am 41, yet I still haven’t celebrated my 40th birthday.  I still plan to, but I haven’t reached a plateau of tranquillity that allows me to do so in a fashion that I feel appropriate.  And I’m absolutely happy with this.

So you may get an invitation to help me celebrate “40” this year, next year… or maybe in ten years time.  Does it matter? I hope not.  I will simply enjoy and twirl and laugh my way through what I hope will be a wonderful celebration – when my heart is ready to rejoice unfettered!

Today has been a quiet day.  Such love with dozens of people wishing my a happy day through the magic that is Facebook.  Family surrounding me with love as well.  I made a cake, because the date was a good excuse to do so!!  And it was good, and absolutely enough.

But when I call to say, come and help me celebrate my birthday, do not wonder that the date bears little or no relevance to the date I was born.  Wonder and enjoy that I am happy and have joy to share, and that on that day I choose to honour being alive, being born to rather lovely parents who grew me up beautifully and continue to follow my journey through life with love and respect.  Lucky me!

Little teeny update

No deep and meaningfuls tonight.  I am trying to keep my blogging regular, it oils the wheels of my creative and emotional expression.  But as I wrote just yesterday, there is not always the energy or time to express all that is being felt.

And one hugely important role of this blog is to keep those who love me informed of the little details in my life.  This avoids their worry if I have not called recently, and I have to admit it takes away the need to make call upon call giving information rather than simply enjoying family company.

So…

This week in a little nutshell:

• Sweet Girl is in school for the mornings only.  Her medication doesn’t seem to be working very well any more.  She worries about food, though her appetite is still driven by the drug.  She is staggeringly fragile and prone to tears.  This evening, as the chimney sweep was struggling to shift a blockage, she was crying at the thought of never having a fire again…  However, afternoons at home are helping her find some sort of emotional stability, and we are slowly moving a little further forward on her road to a better educational environment.
• On that road, a review meeting with Behaviour Support should lead to the involvement of Education psychology in the near future, and there is finally a realisation that this little girl will not manage in a “normal” secondary school.
• Also on that road, we had a long meeting to complete a CAF… common assessment framework.  This is a discussion which is later submitted via a form to try and bring all agencies working with a child together and put in place the practical support that is required…  NOT a fun meeting, but it’s done, and another step, another piece of evidence to get her needs met.
• Little Man underwent a CT scan yesterday.  His regular headaches are a cause for concern, and it was important to make sure that there is nothing in his skull that shouldn’t be (don’t you love doctors and euphemisms? – we’re looking for tumours…), all the while not expecting anything too nasty.  I’m guessing that there is certainly nothing eye popping as we were allowed to go home, and I haven’t heard from the hospital about the results yet.
• While in hospital, and sedated, the idea was to get some blood out of Little Man to check his white blood cells etc…  Well!  First of all, though sedated, he never actually fell asleep (pity!  it made things much harder work for Mummy).  He was lovely during the scan, very out of it but responsive enough to stay still.  Unfortunately, his vein was not compliant, and kept jumping out of the way.  My little boy became very distressed, and having given up on that vein we decided to leave it.  Very good decision!
• Giggle gas!!!  In a bid to help Tom deal with blood tests, we will be going into hospital next Tuesday to try out Entinox (giggle gas).  Subsequently we will make an appointment to get that blood out.  I will have some anaesthetic cream at home to prep him in all available poking spots, and we will use the giggle gas to lower his anxiety.  It’s really good to see the nurses being proactive about this needle anxiety (which I refuse to call a phobia so far!).
• Darling Man was theoretically on holiday.  He has managed one day and a half!  Short of booking a holiday it seems impossible to get him to let go!!  I love his work ethic, and it goes a long way to providing our family with much needed stability, but I have to say I would love to see a little more of him!
• Eldest was extremely upset yesterday when told to stay in bed by the school nurse.  Nothing serious, just a nasty cold, which he still denies having.  He continues to do well according to school staff, and I am looking forward to seeing the various new strategies that are being put in place for January… I know nothing right now!!  A phone call to the psychologist earlier in the week was very reassuring, and I have high hopes that she will be able to help him through some difficult emotional memories next term.
• Christmas shopping is almost done!!  Christmas posting is not yet, and I hope that all gifts will arrive in time.  I have a couple of things still to do, but on the whole there is no big rush.
• And finally, I was able to spend the evening with kindred spirit, Miss Berry last night!  She and I have a long standing plan to see each other every fortnight, despite our rather hectic lives.  We were doing very well until early summer, when life simply took over.  Last night was the first night spent together for a very long time.  Much chitty chatting was had, the children were lovely, and I got home at half past one this morning!!!

There we have it!  My teeny update!

It’s all about the heart…

Today was the day of Toms annual cardiac check up.  Little Man, due to his Noonan Syndrome, has a congenital heart defect.  Had a congenital heart defect.  It’s a funny world, this world of modern medicine.  At birth, his heart sounded quite the way it should.  A few weeks later, this was no longer the case… lots of unpleasant sounds were coming through the doctors’ stethoscopes, resulting in quite disturbing faces on said doctors.

In 2004, the doctors confidently went in through his arteries (starting in his groin), fairly sure that they could open up that pesky pulmonary valve using a clever little balloon.  They had not counted on the stubborn plasticity of this valve, which stretched for about an hour, then returned to its former, more comfortable squashed self.  All of which would have been fine if only it was letting the blood through!!  It was not a wasted endeavour, however, because it allowed the surgeons an opportunity to “see” the heart of the problem (see what I did there, with the punning?!).  Not only was Little Man’s pulmonary valve far too narrow (stenosed), but the whole area around the valve was much too small.

Two years later, in 2006, everyone was ready to go in and fix this pesky valve.  Open heart surgery is a scary thing.  We were incredibly lucky to go through it with a two year old.  I know that Tom will have to endure this again in the future sometime, and I am not looking forward to helping him handle the anxiety of what is quite major surgery.  A two year old simply takes things as they come.  Signing consent is something that is worthy of a post in and of itself (note to self… write about consent).

As it was, Little Man made open heart surgery look simple.  We were out of hospital 3 days after booking in.  Minus a pulmonary valve, and with a widened tract thanks to a bovine annular patch!

Since then, we see the cardiologist yearly.  I’m pleased to say that a thorough echocardiogram today showed almost no change since last year.  A very boring result, which is marvellous!  Tom was wonderful, lying very patiently while Senetta poked him in the chest, sometimes quite hard to get a good picture.  I had my first good appointment with a registrar, and have nothing but praise for Dr Henning Clausen… thank you good doctor for listening.

Next appointment is next year…  Hopefully by then we will have a happier overall picture, but it is rather lovely to know that “my heart is really good”, to quote Little Man as he gave the news to his Daddy on the way home.

Today was a day of hearts differently too.  The thing is, that Great Ormond Street Hospital is familiar to us because Little Man sees so many specialists there.  But unlike for other families, it is not a place we live.  Yes, we have had a few inpatient stays there, but never for more than a few days at a time.  Some families spend weeks and months there.  I’m not sure how the mums and dads manage, other than to know that when there is no choice, we rise to the occasion.

I know the exhaustion of spending hours and days sat in a chair by the bedside of a child who is ill.  I know the brain numbing experience of hours and hours of the Disney Channel.  I know the desperation of never feeling really clean.  Quick showers with a limited change of clothes is no substitute for home washing!  I know the sag of shoulders that accompanies that mediocre cup of tea made in stolen minutes in the parent kitchen.  I know the endless waiting for nurses, doctors, medication, decisions.  I do not know the impact of this life over more than a few days, but I do know that as much as the children struggle and suffer, the parents do so in equal measure.  Not to mention that horrific adult component that adds knowledge of the big picture, and parental instinct that makes you ache each time your little one winces.

So… at the end of last week I put out a little post on my Facebook page:  “All GOSH peeps, I’m coming up!  Who needs a hug?  A coffee?  Anything else?  Care packages can come your way!”.

I was so pleased that two mums were able to respond, and Little Man and I duly made our way first to the bone marrow transplant ward to visit Eric’s mum.  Her little boy is battling the same leukaemia that hit our Little Man, Juvenile Myelomonocytic Leukaemia.  A real nasty.  And Eric is just about to undergo his second bone marrow transplant in a bid to cure him.  His beautiful Mama has another little boy, only five years old so she is juggling an impossible situation.  What can I offer?  Very, very little.  A hug, an easy “hello, I know you, but how good it is to feel you, to see you, to hear you”, a coffee brought from the local starbucks, and a mini care package.  I had found some sweet packs including a shower gel, body lotion and lip gloss, all shimmering!  A body scrub to top it off and some dry shampoo for an emergency pick me up…  And unfortunately, the coffee is transient, so I added a mug and some sachets of that substitute of Starbucks, Via!  I have it on good authority of another bone marrow transplant Momma that it’s not bad at all!!

We only had a few minutes together, but I hope that she got  just a little boost today… just enough to get her through the next few minutes of an endless day!

My other wonderful friend was simply too exhausted to meet me.  I am so so pleased that she texted me to let me know she couldn’t!  She’d had a day of team meetings with doctors, nurses etc etc, in the unbelievably complicated care of her little girl.  I didn’t need to see her, I just wanted to offer my heart, a break if that’s what she needed.  And actually, it wasn’t what she needed.  She needed to spend time with her girl!  So Little Man and I popped to the door of the ward long enough to catch a nurse and hand over our care package.

Sometimes, I hope what’s needed is for a friend to offer a visit, but be equally happy to bow away if the time is not right.  So that is what my heart gave to Mama S.

All you Mamas in hospital, I send my love to you, courage in droves, hugs and the encouragement to  allow you to say:  Today, THIS is what I need.

Today, it’s all about the heart.

Sticking plaster heart

It’s the end of a gruelling day.

Just one meeting, but I feel battered and bruised and tired beyond imagining.

I don’t know what advocacy feels like when you are speaking for someone outside your close circle.  I only know what advocacy for my children feels like.  It starts by having to find a way to make every singly person around the table “feel” what life is like for your child.

Part of that, it seems, involves letting those strangers see how his mum feels.  Me.  So I proffer my heart, in all its shining, beating, scarred and shattered glory.  I would not change it; each crack is testament to an act of love; each scar reminds me that I can and will survive; each beat sounds out the rhythm of love and life. Once upon a time, I was terribly embarrassed and uncomfortable when tears ran down my face.  Now I let them run.  In part because those tears allow me to stay standing – a little like the valve on a pressure cooker, they let just enough pain flow out of me to let me continue.  Also, though, because the sadness or pain they hint at is real.  There is nothing fake or dramatic about my tears, and they are one of the few signs that people seem to understand.

I would hate anyone to think that I enjoy the spectacle that I describe.  It is indescribably difficult to bare myself to people who at best are strangers, at worst are bureaucrats who simply do not want to see the reality of the lives they affect.  But in the last several years, it is the only way that I have found to reach these people and give them a small understanding of what life at our end feels like.  And once they have that understanding, I have a new ally against the faceless, nameless system.

Then we get down to the nitty gritty.  As much as they want to make things better, it is my job to keep them on track, to remind them how much we at home, and teachers at school have already done, have already tried.  Though Tom is entitled to 23 hours a week of one to one support, school actually provides 31 hours a week.  Not out of some mindless generosity, but because that is the only way to keep him in school and safe. (He is out of school for the remaining hours of the school week due to various standing appointments.)

In spite of loving people, and being very sociable, Little Man has no friends.  (Apologies, he has one friend out of school, who is four years younger than him.)

Given a scale of 1 – 10 whereby 10 indicated Tom engaged in his learning, happy and progressing,his teacher puts him at a 2.  If we discount maths, he’s at a 1.

On a similar scale for self esteem and friendship he’s pretty much at a zero.

The professionals scrabble around trying to find some positive, wanting to improve the “now” while we wait for the Authority to sift through the various reports and decide from afar whether or not my Little Man’s needs can be met where he is.

But the reality is that the “now” is a holding pattern.  “Now” is only about survival.  Let’s get through till half term, till Christmas.  Let’s try to enjoy the little moments of smiles, try to create some good memories outside school…  And a big part of “now” being manageable is in the hope (and maybe the knowledge) that eventually, that wonderful little boy will finally be going to a school which will be able to meet his needs.

A school which has the facility to deal with his medical issues as a matter of course.

A school where the other children in his class share his pace of learning, and where he will achieve and progress.

A school which will  help prepare him for the “real world”, and help him overcome his disabilities.

A school where he will, hopefully, find peers and then friends.

This is why I advocate, why I make the tough decisions and stand by them.  This is why I bare that broken heart, and listen to those strangers speak  of a little boy they just met this morning who told them he was “friendly with dogs”…. and they speak of being “moved” and “saddened”.  I just let my heart crack a little more, and find some sticking plaster to hold it together again…

The world they created for themselves…

Eldest is home for half term.  It’s going remarkably well.

Now… as a mother, my expectations are not high with him during holidays.  I have made a list of expected tasks (colour coded, rotas included, and laminated!!  With a check list on the back) which includes getting up by 8am weekdays, 9am weekends, getting dressed, applying deodorant, having breakfast.  There is a big part of me that feels that I am not setting standards too high for a twelve year old.

But… these are things that he really struggles with, and for him to comply with any rules and routines is remarkable.  My check list is full of ticks!!  There have been shouting matches, and some nasty confrontations, but they’ve been resolved really rather well.  We’ve even had some very good late night chats (by which I really mean therapy sessions – always with the late night heartfelts…).

Eldest LOVES his laptop.  And I have to say, he’s spent most of his time on it this week.  Which normally makes me feels deeply uneasy.  We have got out of the house at least once a day which helps, and his compliance with our few rules makes all the difference.

What is new, however, is that laptop gaming has now turned into a social activity!  Thanks to Minecraft and Skype, I now feel as though there are two or three nearly teenage boys in my house!!  It’s a strange and slightly freaky experience, but also rather lovely to witness my Aspie playing with his friends.  For those of you familiar with The Big Bang Theory, the scene is extraordinarily reminiscent of THIS clip. (Embedded videos, I suspect, only come when one pays WordPress).  of course, in my house, I only have one geek sat at his laptop – the friends being in their respective homes somewhere in the UK (I think it’s only boys from school at the moment… oh the joys of the internet).

Later in the evening, I do insist on him coming downstairs, if only to avoid the fight that comes at bedtime… the plus side being that his communication then turns to typing rather than talking – excellent for his typing skills I think!!

And so, I got to thinking…

Parents of children with Asperger’s syndrome are often found to talk of their love/hate relationship with all things technological.  Our children are often extremely at ease with computers, happy only when in front of a screen and “reliant” on such devices as DS’s, playstations etc…  Of course, when we mean reliant, we usually mean that we rely on said devices.  They provide what is often the only moment of peace and respite in the day.  They also allow us to see progress, hope and potential in our children which in daily life is most usually missing.

And yet, we hate them.  Because our children are obsessive by nature.  This means that, although we love the peace that a computer provides, we hate the conflict that the same machine causes.  Eldest has almost no sense of time.  So whether he has been on his computer for ten minutes or several hours, the wrench he experiences when it is time to stop is equal, and dreadful.  The ensuing emotional outburst can be extraordinary.

When I see the animations that Zack has programmed on Scratch, or the creations he builds on Minecraft, I am bowled over by his talent and his ability.  And yet I hate the machine deeply for turning him into a bolshy, aggressive recluse.

In the last few days, I have witnessed a group of these young boys demonstrating very typical social behaviour.  That they do so at miles from each other, using computers and games is really beside the point.  The technology gives them a platform to do so, in contrast to the “real” world in which they struggle so much to form and maintain relationships.

And it struck me that the very thing that we parents love and hate has been created by our children.  Over generations, these quite amazing people have devised, engineered and built a world in which they can thrive.  The rest of us reap the benefits of computers, the internet, ever-evolving software etc…  But actually, I’m beginning to think that Aspies are taking over the world!  And in creating a world which suits them, they are far better able to communicate, socialise,and … well, live!

I was discussing this with Darling Man earlier this evening (another wonderful Aspie, who also lives very much through his laptop) and our thoughts very quickly turned to “how did Aspies cope without all of this?”.  We each ended up feeling that they probably fell into two groups:  those who were doing the creating, the building, the engineering; the scientists, philosophers, engineers.  And the drop-outs.  Those who simply could not cope with society and did not have the means (social, financial, intellectual) to be among the first group.  I dread to think how many prisons were filled with people like Eldest, how many of the homeless in the cities shared his difficulties with social convention and expectation.

How glad I am, we are, to live in our time, and our place.  To have the means, intellectual, financial, social, to provide Eldest with possibility.  Right now, that means playing silly computer games with friends miles and miles away.  But tomorrow?…  Who knows!

Laughing the week away

I’ve been pondering how to approach this week’s post.  I’m quite determined to approach this blog with some sense of regularity, which means that indpiration is not always at my beck and call.

I also swing from the practical nature of a blog which keeps loved ones up to date with the roller coasters of my life, and the more philosophical nature of a blog as a journal.  I love both.  As difficult as my little tangles can be sometimes, I’m well aware that it is much harder for others to hear of them.  Mothers never lose that instinct to protect and shield their children from pain, and the inability to do or change what their children live is surely one of the hardest tasks.  Add in a daughter who is fiercely independent, and you have a recipe for heartbreak!!  The intermediary of the written word allows me to be utterly honest about the facts, but more importantly the emotions of life, without needing to concern myself with the immediacy of loving concern.  That same written word allows the loving ones to think, process and then (hopefully) realise that there really is very little tragedy.  Life is drama of a sort, to all those of us who live it.  What form that drama takes depends on so many things:  from circumstances outside our control, to our reactions both physical and emotional.  Admittedly, some dramas are more unusual than others, and if your drama contains some trigger words (cancer, autism, but also divorce, death and again tsunami, fire), then ears prick up a little more.

My drama has a good few trigger words, but how I live it is what really matters.  In all of the tangles, there is a great deal of simplicity.  There’s a great deal of “normal” when the children fight like cat and dog.  A great deal of “normal” also when we get on our bikes (and power chair) to cycle into town and enjoy coffee and baby chinos.

Tonight was maybe not so “normal”, but was just wonderful!

My very dear friend, Beauty (do go and visit her blog, Adventures with Breast Cancer) is a laughter leader.  Isn’t that amazing, and wonderful and just smile-inducing?  If I’m not mistaken (and I do hope she corrects me if I’m wrong), she graduated as a laughter leader only weeks before being diagnosed with bilateral breast cancer.  Sometimes life plays cruel tricks.  Beauty is a lady I admire with all of my heart.  She, like me has three children, all of whom grapple with disability of one kind or another.  She, unlike me, was left alone a while ago and luckily has since found a Wonderful Man.  She is an inspiration, and sometimes needs to be reminded of that – especially when chemotherapy is doing its ugly thing.

So… Beauty held a laughter workshop at her house this afternoon.  She wanted the practice to help with the possibility of attending a television show dedicated to happiness.  If I am a little cryptic it is only from lack of knowledge, and her concern that she may not make that event due to ugly knight Chemo.  I chose to come with my two home kids.  Sweet Girl and Little Man loved the laughter exercises we did this summer, and I was thrilled to introduce them both to Beauty, and vice versa.

Another friend was also there – new to me.  One of the marvellous things about Beauty is that she is surrounded by beautiful people.  Lady C is another of the threesome club – three children, all with disabilities.  Another statuesque lady from whom I am certain there is much to learn.  The sixth of our group was Beauty’s daughter – a young lady of lovely grace and dignity at the beginning of her adult journey and beginning that journey with beautiful humility.

We laughed!!  A lot!!  Laughter yoga is all about breathing deeply.  As Beauty was keen to have us understand, real and forced laughter are identical in terms of their benefits to our physical and mental health.  And the wonderful thing is that forced laughter in a group always leads to real laughter!  Little Man was fantastic at provoking quite real laughter, and Sweet Girl loved the games we played.  By the end of the session we all had big smiles on our faces, and aching bellies from the laughing!

Much of my social life tends to happen online.  Many of those friends I hold closest in my heart are simply too far to maintain a relationship as close and alive as I want in the “real” world.  So my “facebook” world is alive with women and men who open their hearts and share in the beauty and the pain of their lives and mine.  I consider that completely real.  However, if I get the chance to reach out of the online world and touch their hand I grab it.  One day, I hope to travel to America where I have a cluster of such kindred spirits.  But I know deep down that such a physical meeting is by no means necessary to a true and meaningful friendship.  Tonight I was fortunate enough to spend time with one true friend, and discover another one!

And we laughed the pains of the week away and bolstered each other up for the week ahead.  There are times when I truly love the human spirit…

Laughing…

Click on the “laughing” link, or the picture for a video well worth watching!

 

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