A letter to my Son

A letter to my Son,
My darling Zack…
I’m sitting here, in the last few hours of the Christmas holiday.  We’ve just begun a new year, 2013, and you are growing into such a promising young man that I feel a real need to let you know quite how proud I am of you.
So instead of writing my normal home notes to school, I am writing you this letter.  It is not meant as just a private letter, and I intend to share it with staff at school so that they, too can see how happy we are with your efforts.
I know that you have had a tough time at school this year so far.  In spite of difficulties, you have shown that you can maintain your focus in class and keep on showing improvement.  You have impressed staff with your ability to be kind, helpful and also to keep yourself out of disturbances that do not concern you.
When you came home, I know that you and staff were really struggling with matters concerning personal hygiene.  I won’t lie to you, this was bothering me a lot.  It is so difficult to explain why hygiene is so important; it is not only a vital part of good health, but a measure of your awareness of others.  You see, as much as we take care to minimise things that upset you (loud noises, certain hand gestures, the words or phrases we use), so we expect you to take care to minimise things that make us uncomfortable.  Body odour is a big one!  But it’s also very difficult to talk to a young man about this without causing huge and painful embarrassment.  And the last thing I want to cause you is pain or embarrassment.  I am wonderfully, happily proud to say that you “manned up” to this problem and tackled it perfectly at home.  You only needed the slightest prompt to have your shower, which you did extremely well, every day.  Well done, Zack.
I am more proud of the way you have handled yourself this holiday than I can say.  You have followed our rules with almost no argument.  You have made efforts to be a real part of the family and you have tolerated the withdrawal from your laptop with a maturity that does you great credit.
Each morning when you come down for breakfast, I see a young man who has taken care of his appearance, and is willing to put a little effort to fulfill our expectations (a shower every evening and deodorant evening and morning have meant that you have been a delight for the senses, both visual and olfactory – you look and smell great!).
We have seen a young man who has full control of his language and knows that offensive language should be limited to a very small time and company.  We have seen you master your frustrations and show us true respect.  We know quite how difficult that can be for you, and your mature behaviour is a sign of how much you care for us.
As your mum, I was moved to see you and your Dad work so beautifully together.  I saw how much you loved learning to program, and I also saw how much Dad loved to teach you.  To see you both doing something together, both working to solve problems, was a very special moment for me.  I have loved to see your perseverance to keep working until that problem is solved in spite of the frustrations you experienced.
It has been a little more difficult to get you out of the house, but once in your shoes and outside, you’ve shown that an outing occasionally leaves you smiling and engaged.  I know that you loved your special day in London with Dad, and he’s looking forward to the next one!
So I am looking forward to driving you back to school in the expectation that you will take these new habits and keep moving forward.  I fully expect to hear from staff that you are a model of personal care and hygiene.  I also expect to hear that you are making an effort to moderate your language whenever you are within the earshot of adults.  I do understand that when chatting to friends you might let that slip, but I would be very sorry to hear that bad language had been used around staff.
You have shown your talents musically, which continue to improve, and I feel that you can begin to take some leadership roles in the school with Mr Moore’s help.  You will have to let him know that you are willing to take on some responsibilities, and that you would like to help with concerts and other such events (assemblies?).  Combining work in your private lessons with some hard work, I believe that you can achieve beautiful things in music.
I know that you have worked really hard in the holiday in the field of computer programming.  For you to excel in this area in the future, you will need to achieve qualifications in maths and ICT amongst others.  That will mean doing work that you may be much less interested in.  Try and remember your long term goal, and get those more mundane and boring units completed as well and as quickly as you can.  You will be amazed at how quickly the work will become more interesting.
I’m excited to see how you will progress in your lessons this term, and I’m especially keen to see some good effort marks.
You are brimming full of potential, Zack, and my honest opinion is that you are just beginning to be able to achieve it.  I hope you will grab life with both hands (figure of speech!), and work hard to reach those ambitious goals of yours.
With pride beyond imagining and love that fills the universe, I will always be…
Your Mummy

School, learning, education, home

I find myself once more on the precipice of Education.  At two other times in my life I have found myself here, at a Crossroads.  The path well travelled points to school.  It is one which most take without even being aware of other paths; one which most take with a sense of righteousness; one which few take without question.  Then there are other paths into the forest, some barely distinguishable from the undergrowth.  Some of those paths are those taken by special schools who cater for children who simply cannot learn in a one size fits all environment.  Other paths see parents finding schools who have explored alternative learning approaches: Montessori schools, Steiner schools, small independent and extremely individual schools.  Choosing a school for religious reasons seems more and more common and in itself is forging a new and visible path through the forest.

Another path open to parents, but little publicised is that of home educating, or homeschooling. Home educating is not exactly one path as each family undertaking this journey will do so in their own fashion.  The choices are endless, and not so long ago I did a vast amount of research on the matter.  From paid curriculums which provide you with the course material, a tutor for help or advice and marking independently, to “unschooling” which to the uninformed seems much the same as leaving children to their own devices, the variety of approaches is almost infinite.

In June of 2006, Darling Man and I came to the inescapable conclusion that we could not continue sending Eldest to the local school.  He was six years old at the time, had recently been diagnosed with Asperger’s syndrome and was in a terrible state.  His fear and confusion each school day was a horror to behold, and he was begging me to kill him on a daily basis.  In moments of lucidity, he would sob his heart out asking why he couldn’t be like the other children.  Despite all of this, the then special needs teacher could give us no help.  His intelligence was a barrier to getting a statement and the help he desperately needed, and the best she could offer was that any statementing process would take at least two years.  Zack did not have two years in the state he was in.  We could not afford private schooling, nor could I find any school that would be able to meet his needs. Faced with this  situation, I decided to bring him home.

This was a decision that was taken over the course of about nine months and was not taken lightly.  I was incredibly fortunate to have the utter backing of Darling Man, but I have to stress that the choice to home educate was no choice at all.  It was a decision that came from desperation teamed with the knowledge that I am (possibly more than anything else) a teacher.  I knew that I could teach him, and I knew that he needed to be with Mummy.  His emotional development seems to have hit the “bonding with Mum” stage – about five and a half years late!!  His need to be close to me, together with his utter devastation when in school made the conclusion inescapable for us.

It was very hard work.  During the first year Eldest was home, I focussed hugely on his mental well being.  We did a lot of art, working on BIG canvasses, using clay, playing music.  We went ice skating and climbing because this once fearless little boy had become terrified of everything.  We worked a little on handwriting by copying poems (this took away the fear of finding words), though I eventually decided to remove writing from his curriculum, preferring to scribe for him.  After a while, he began to write for himself, but I still think that this would have taken much longer if I had persisted with forcing him to write.  We worked on maths without worrying that he did not remember his number bonds to ten… he could easily do long multiplication and division and we worked on weird and wonderful ways of working around his difficulties with rote learning.  We “adopted” a tree on the common and worked out how old it was, what creatures lived in and around it and tracked its progress through the year.  We learned all the countries of Africa and drew some beautiful maps.  We flattened a globe to work out how maps are drawn.  We read, aloud, together.

By the end of our first year, I had my boy back.  I also had a little boy who clearly had some considerable difficulties.  I made referrals to occupational therapy, and sought help from the local autistic school.  They were very helpful, and offered him a place on a specialised speech and language therapy group.  Social skills were very very difficult to work on.  Zack was so terribly afraid of children his age that any effort at group play was failing.  I eventually chose to make him a part of the local community rather than to try and force him into a peer group that was simply non-existent.  We want so much for children to be with their chronological peers, but Zack had nothing in common with other six and seven year olds.  So we went to coffee shops and grocers, bakers and butchers.  Zack learned to place an order, pay and get change.  He learned to say hello and in turn, the shopkeepers learned his name.  Not only was he beginning to be a part of our larger community, but I was gaining a sense of support.  Eldest had and has a tendency to run away when angry, upset or confused.  Slowly, I was beginning to feel that if he ran, I could count on community support to notice and act should they see him. Home education was in many ways a huge success.  For then, for us, for that particular situation.

But there was one thing I had not foreseen: as I was busy trying to keep my little boy from plummeting off a cliff, I was also supporting Sweet Girl in her first year at school (all the while trying to make some sense of Zack’s situation for her), and I was keeping Little Man going (he had started pre school, but only part time, and his health concerns were as time consuming as ever).  While I understood the need to look after myself, I lost sight of that emotionally. In late 2008, it became clear that things would have to change.  Eldest was becoming violent and both Little Man and I were at risk.

By January 2009 I knew that we would have to look at some kind of residential schooling and began the excruciating process to get him an educational statement and preparing myself, Darling Man and Eldest for a major change.  The paperwork went in on February 3rd 2009.  On the morning of March 24th, I broke.  There followed six months of awful pain, uncertainty and upheaval for all the family.  Most of that is documented in my older blog, The Goings on of my Little Life and is not for here or today.  The important thing is that we got through it, and on October 2nd, Eldest changed paths once again, and found one ideally suited to him.  I’m thrilled to say that he is doing incredibly well at a very specialised school.

Now I am poised. Waiting and ready to make a similar decision IF  it becomes necessary.

Sweet Girl simply will not manage mainstream secondary school.  She finds it such a struggle to go into her primary school, one which she has been a part of since she started school.  Her anxiety level is sky high and she experiences fierce panic attacks.  She notices the slightest change of smell, and finds it almost impossible to adjust to that change.  At times she cannot tolerate the feel of shoes on her feet.  People… crowds are her worst nightmare.  She feels hemmed in, watched and crowded to the point where her brain shuts down all “unnecessary” functions and operates purely at a primal level: fight or flight.  The very idea that she might in less than a year be capable of approaching a brand new building, with brand new staff, brand new children (and far more of them), new smells and sounds and a completely different structure to the day, different teaching methods and expectations is laughable.  And putting her into that situation is not something I am willing to do.

As much as I understand the need to follow processes, and “play” the system, I do so with enormous awareness of the impact on my daughter.  She is in school in spite of her fragile mental health, because the “system” requires her to be.  In going along with this, I hope to precipitate the statement that will give her access to an education that she can access.  Last year, I reached my line; she was so extremely distressed that she was making herself physically ill.  Each morning saw a physical struggle to get her to let me go, and one morning her fierce need to flee resulted in her hand being caught in a door as a member of staff tried desperately to keep her safely indoors.  That day I said no more.  No more physical restraint, no more closing doors behind me, no more carrying her off screaming.  This is no way to treat a young girl of ten who is so distressed that she cannot control her behaviour more than that.

So far this year, school and I have worked within the constraints of the system and within the boundaries of Sweet Girl’s dignity and health.  The various agencies that become involved when children are not in school sufficiently also seem to be understanding that she is not truanting, nor is she a school refuser (they haven’t actually worked that one out yet, but they do acknowledge her anxiety).  And so I have hope that we will achieve the goal I have in mind: that she access a school where she will feel safe and nurtured enough to allow her to learn.  In her case (and each is absolutely and compellingly unique) this has to be a special school.  Luckily, fortunately, there is a school not far from home which I believe suits her ideally.

My fear is that the wheels and cogs of the system turn very slowly.  Because of this, I am “supposed” to apply for secondary schools this week at the latest.  Mainstream only since she does not currently have a statement.  Rather than ignore the system, I have written a candid letter explaining the reasons which prohibit me from applying to such schools.  I also have the backing of paediatricians and psychiatrists.  In an email, the system (nameless) urges me to apply for fear of becoming a “late applicant”.  This is mentioned with a considerable dread – though I feel they missed my point that I have no preferred choice of school given that none of the available schools would be able in any way to meet Sweet Girl’s needs.

So I have made a decision.  I abhor uncertainty; it fills me with nameless fear, opens the floodgates to panic and generally makes me jittery.  IN order to avoid a year of such uncertainty I needed to have a back up option for next September.  Having discussed the options with Darling Man (Sweet Girl need not know any of this at the moment), I have decided that I will home educate Kesia in September if we have not yet obtained the right placement for her.  I will not stop fighting for her, and I will probably ask the doctor’s help (I would rather not remove her from the school system officially – these are details that I only need to deal with IF the situation occurs).  But I will not place her in the dragon’s jaws, and I will not allow her to drown.  She must maintain an anchor of safety and stability and mainstream secondary school would cut her off from that.

In a later post I’m hoping to explore the myriad ways in which one can home educate.  It is a wonderful and frightening world of possibility – exciting and fabulous, heavy with responsibility and also potential.  It is one in which I have already dipped my toes, and though I fear its necessity, I also hold a glimmer of exhilaration at the thought of exploring learning with my Sweet Girl…

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!

Home coming, Hope coming

Spring Snowflake (Leucojum vernum (Photo credit: Wikipedia)

 

Eldest is home.

 

And I, and we are happy!

 

There is still an element of surprise at the wonderful, incredible fact that we look forward to seeing him.  Which looks and sounds awful, of course.  You must understand, that there has never been a moment, not a fraction of a fractured second when we did not love him, when my heart did not pull towards him and want to tug him back and envelop him with all the love in the world.  And yet, there was a time even not so long ago when the act of being together, of living with each other brought nothing but pain to us all.  The anticipation of that pain meant that each homecoming from his very special school was a sharp mixture of happiness and deep, deep concern at what might happen.

 

Eldest has Asperger’s syndrome.  He feels profoundly, and each emotion stands alone as it is felt… often unmoderated by other feelings that might in others be present.  He loves deeply, but when he is angry any love he feels is irrelevant.  So although he and I have a very close bond, there have been times (far more than I would like) when anger has been so intense that he has become physically violent – with no restrictions brought on by social taboo.  When a blow is released, the full force of that blow lands.  The same goes for words.  Although he is learning (slowly) that social convention dictates that he must moderate what he says to others and about others, in the heat of frustration or confusion or anger, social convention has no role.  And he has a breathtaking ability to instinctively hone in on his “opponent’s” weak spot, the Achilles heel.  I have always found it fascinating that a child who is so self-oriented and has such inability to put himself into others’ shoes can at such times have a deep knowledge of another…

 

He is a quite wonderful boy.  His brain works in mysterious ways, some of which are remarkable and light up his future with a myriad stars of hope and potential.  There are also a vast number of black holes in there, with the potential to block his stars’ progress.

 

And then there is his quite wonderful school.

 

It took a long time to find a school, and a battle to gain his entry.  All of that is lived in my older blog, The goings-on of my little world and this post is actually not about those dark days.

 

Although…

 

You see, I have a friend.  A wonderful, amazing, inspiring lady that Facebook has given me the privilege of meeting.  Her words of peace and love and acceptance are filled with a wisdom that I feel honoured to witness.  Yet she writes tantalising little things about hope, and seems to find it… frustrating?  Something does not sit well with her when thinking of hope.  I may of course be wrong, and I look forward to reading more of her words, but she has made me think long and hard about hope because it has become something I treasure.

 

I have a very specific relationship with hope, and it began with the dark days, weeks and months before Eldest went to his very special school.

 

It began with a total loss of any hope at all.  I was living at home with a little boy for whom I could see no future.  That is to say, the only paths I could imagine while living with him and trying so so hard to help him were the following.  (And actually it’s really important for me now to separate the last sentence, its subject being my darling boy, from the next because they are no longer linked.)  Suicide, Prison, Homelessness.  My wonderful, special, exhausting little boy was eight years old, and yet these were the only things I could see.  The absence of hope.  Doing the things I had to do in the morning, afternoon and evening, and dreading the following day.

 

Yesterday, Eldest came home for his half term break.  (Well, I went to pick him up, and oh my good golly was the traffic and weather awful… but we got there and back quite safely if tired.)

 

He is now a burgeoning young man of nearly thirteen!!  He smiles again, and every time he does, I see blossoms bursting into the air around him.  He hugs me and his siblings (and his Dad of course), and every time it’s unexpected and as wonderful as the first time he hugged me (on the birth of his little sister – he was nearly two years old).  He (occasionally) accepts our rules, which make family life possible, and that’s very new and takes me by surprise each time.

 

Things are not all good, and his Asperger’s causes real difficulties at times.  But right now, today, on the dawn of his home coming, there is Hope coming along with him.

 

Hope does not have a name, or a face.  I have no idea what lies in his future, but I feel he has a future, where once there was none.  Hope feels like spring, or a waft of air on a hot dry day, or a snowflake on your face.

 

Hope, I suppose, feels like Life.

 

Roller coasters of life

It’s hard to believe that it’s only just past one week since I last posted here.  As much as I would like to post more often, I’m trying to stick to at least coming here once a week.  But this time, I’m in awe of just how much can go on in just eight days!

It was a week of high seas parenting.  Get on that ship, tie yourself on and hold on tight while you pass through the storm. Actually, I’m a little happier with the roller coaster metaphor.  Not so long ago (about three years, so a lifetime subjectively), I was very much in a little boat in the middle of the ocean on a dark stormy night.  I had no idea where I was heading, or whether there would be any end to the turmoil, fear and pain.

Three years later, I can at least remember that little boat and I now have the experience to know that there is hope.  So rather than being back in the boat in the cold and dark, I’m on a roller coaster.  I hate the things with a passion, they make me sick!!  But at least those little cars are on a rail.  And the wonderful, salutary thing about rails is that the journey is predefined.  If you can just hang in there, you will get to the end.  You may be covered in vomit, shaking like a leaf and wonder why you ever got on in the first place, but you will  survive.

The roller coaster I especially hate is the one that leads from failing education, through the dreaded “system” to the right placement which will allow a child to thrive.  It is such a pervasive thing, education, especially when it goes wrong.  It impinges on the world of health, family, social services and simple day to day living.  But as I write this, I realise that the bottom line is that education is where it is all going wrong.  My good luck is that I have experienced a deeply failing child before, and with the right support and environment, I now have a son who is blossoming.  Of course, his bloom is quite particular, and doesn’t follow the standard expectations of Norm the Gardener.  However, in the special nursery, he is seen as beautiful and full of potential.  As strange as his growth and flowering may be, he may yet give the world something intensely more valuable than the pretty tulips or roses that adorn most gardens.  Whatever he grows into, it will be worthwhile and hopefully productive!

Right now, I have two other children.  Both of them are failing at school.  Or school is failing them, I suppose it depends how you look at it.  The reality is that neither is true.  They are each doing their best, and therefore cannot be “failing”.  The school is performing a Herculean task each and every day in their efforts to support them, so it is clearly not failing.  To the best of their ability, both these children and their school are trying to meet needs that simply cannot be met in this environment.  The failure stands firmly at “the system”‘s feet.

One of my “virtues” (I suppose one would call it that… it’s a bit of a double edged sword in my experience) is that I am very able to see many sides of an argument.  In this case, I am keenly aware of the difficulty of assessing children with special needs.  Of trying to meet each individual’s needs on a finite budget.  Of ensuring that the right decision is made, especially when we are talking about children whose education is going to cost so much more than Norm’s.  So when I am told that we must follow this or that procedure, I endure.  When I am told that despite all the staff’s conviction that needs exist, we need to wait to gather “evidence” to present to the “system”, I wait, I gather, I watch…

But.

“Evidence” is too late.  “Evidence” only comes when the child falls apart.  When so much damage is done that  scars will remain forever – if indeed the wounds ever truly scar.  “Evidence” is only gathered when a child’s behaviour is so extreme as to merit paperwork, meetings, concerns.  Tears, tantrums, panic attacks, deep sadness.  Vanishing self esteem, self-harm, isolation.  All of these things are “evidence”.

A parent’s concern is not evidence.  Letters written to school to enquire about a child’s progress, homework issues, or to inform the school of a child’s distress are not evidence.

The trouble is that children tend not to communicate these deep dark secrets to school – especially if they have a solid functional bond with their parents.  They confide in us.  They trust us.  They look to us to keep them safe.

The “system” does not like us, nor do they trust us or confide in us.  So the only way we can help our children is to watch as they fall apart.  Watch a little girl who loves learning and loves school reach a point at which the very building terrifies her and the ensuing guilt eats her alive.  Watch a little boy become so excluded by his disabilities that he has no sense of belonging to the school he has attended since he was 4.  Watch people who never imagined they’d be working with special needs children struggle with the important details of tube feeding – and sometimes simply fail to understand how important something like that can be.  Watch as our children truly fail: fail to be happy, fail to think of themselves as worthwhile, fail at being children.  Day in, day out, as the “system” plods along its unwieldy path.

Last week, I began a week with three darlings on the brink of disaster.  Eldest had become convinced that I was evil and bad and was refusing to speak to me.  Given our fragile relationship, this was a source of considerable concern.  Sweet Girl was/is sliding into increasing anxiety and guilt about school – our plan for her is failing and we have no back up.  Little Man was and is generally quite (very?) unwell, losing weight steadily and very pale.  The ghost of leukaemia had raised its ugly head once more.

There is no way to create a positive in detailing the emotional roller coasters that we were enduring on three separate cars in the middle of that week.  Darling Man was having to process little loop the loops at the end of a full day’s work and in his own Aspie way was managing – just.  Unfortunately, his reflexes tend to make him shut down when overwhelmed.  While that works for him as a coping strategy, it’s not the ideal way of riding those roller coasters as a couple.  In some way, I felt as though he had simply stepped off for a while – thank goodness I know him better than that!!  Let it simply be said that the middle of the week felt more like a month and the roller coaster was steep, bendy, dark and seemingly endless.

I’ve come to love a slightly tongue in cheek saying that was shared with me on Facebook (oh, yes, we’ll have to have a post on that subject sometime!!):

It’ll be alright in the end.  If it’s not alright, it’s not the end yet!

On Friday, the roller coasters found a far more gentle section…  all of a sudden, all together.  Life is funny like that.

Tom had blood tests done on Thursday and I got the results Friday.  Phew!  Sigh of relief when the doctor told me, “white blood cells:7.9”.  In fact, all of his blood tests came back normal.  Good news?  Well, I can lay the leukaemia ghost to rest for another while (sort of!!).  I’m less happy about the fact that I have a little boy who is shrinking before my eyes, very tired and clearly not ok but no answers yet.  However… panic levels are off red alert!

Kesia, thanks to a huge amount of effort and hard work on her part and angelic patience on mine, was able to complete some research and a report comparing Odysseus and Achilles.  We copied the report to her teacher as “evidence” that she is at least keeping her brain working a little.

Zack, thanks to his wonderful school and superlative headmistress, called home!!  We had such a lovely conversation and I felt as though my boy was back a little.

Oh that euphoria that accompanies relief!

I don’t drink (I just don’t like the taste of alcohol, and on the few times when attempting tipsiness, I go straight from normal to feeling sick… no pleasant blurry interlude, so why bother?), I’ve never smoked (yuk… smoke in your throat and lungs – never understood the attraction), nor have I attempted any less mainstream “high”.  I may sound like a prude, or a “good girl”, but really it’s simply that none of that has ever held any appeal.  Combined with a huge fear of loss of control (oh yes, big time control freak here – life is trying to beat it out of me, I think).

But relief following massive stress?  Well,that feeling does seem to approximate what others describe as a “high”.

Worth it?

Nope.

Give me the flat roads of Holland to cycle along any day of the week.  You can keep your roller coasters, high octane adrenaline sports, recreational (or otherwise) drugs and cocktails.

Now if only the universe, any gods who happen to be floating around, the great spirits of earth, wind and fire, Mother Earth herself would (just for a while) hear that little plea, and let me sit in my little roller coaster car without flinging it wildly around bends, up and down, right side up and upside down.

I’d be quite, quite happy.

Finally… report on Eldest’s weekend!

Last week whizzed by in something of a blur.  By Wednesday I still hadn’t heard from Eldest, and a little thought began to buzz around my head unpleasantly – something akin to the mosquito that buzzes in your ear in the middle of the night.

Since the beginning of term, he had not called home.  I had phoned a couple of times but not been able to command his attention for more than a minute or so.  Now, on the whole this does not trouble me.  When he first started at residential school he needed to call home every night, and last year he was speaking to me twice a week and to his Nanny twice a week.  The reality is that when he forgets to phone home it’s because he’s happy, busy and settled – all good things.  But three weeks was pushing it a bit!!

There are a number of issues going on here.  Eldest has Asperger’s syndrome, and caring about other people in a practical way requires a conscious and concerted effort.  Add a big dose of adolescent laziness to the equation and it stands to reason that communication is going to be minimal!  But this very syndrome means that we need to teach him the importance of connecting to others, and maintaining the connection with people who care for you and can help you when things are tough.  So phone calls home are something he needs to learn to consider important.

His very real success at school is in great part due to the fact that he does not come home very often.  This gives him the consistency in life that he needs to make real progress in all areas of his life.  Our phone calls area big part of that routine, though as they allow him to keep a toe dipped in the waters of home.

Not to mention a couple of sensitive issues that play into this but cannot be aired in the public forum that is the blogosphere (oh my goodness, first time I’ve used THAT word!!! – slippery slope, people, slippery slope!).

All of this mild maternal unease was brought into sharp focus following a call from school to let me know that Zack was refusing to phone home.  Cue an afternoon of increasing anxiety and normal human upset, and I found myself calling that wonderful, wonderful place and having a good heart to heart with the house manager.

Phew!  My son is a pain in the butt teenager with Asperger’s syndrome.  Nothing more or less!!

We agreed on a mandatory phone call home on Saturday evening and one past the surly grumpiness I was able to have a really good catch up with him.  First on the agenda was a description of his weekend away at his friend’s house.  Seemingly this was a huge success.  Much of Friend’s extended family was there to celebrate a birthday, and Zack shared Friend’s room very happily.  Computer games were played, food was eaten, sleep was… not on the agenda!!  I’m really proud of how well he conducted himself – the lad’s growing!

As huge as this achievement was, it pales compared to Eldest’s news from last week.  He, of all the boys at school, has been chosen to pilot a new scheme designed to nurture potential musical talent.  The music teacher will take him out of ICT  class once a week to give him a full 45 minutes one to one music lesson.  It’s now a week since I heard this news, and it still makes me buzz – I’m over the moon to see this little boy make his journey towards young manhood with such confidence and positivity.

All thanks to his amazing school..

Inchstones, yardstones, milestones

I’ve alluded to the fact that as a mother of children with special needs, seemingly tiny and “normal” achievements acquire magnificent proportions.

Zack’s first hug overshadowed the birth of his sister on the afternoon of 15th December 2001.  What to most families would seem normal and unremarkable (though lovely) is to us as big a milestone as first steps, first words.

Today was something of a milestone for me, and I was going to entitle my post “Milestones”.  Until I started typing, and considered that Milestone implies measurably big progress.  And what I experienced today was not “big” compared to Norm.  And it was one of those things that epitomise the experience of being Mum to three special, quirky, struggling children.  That experience is primarily defined by the JOY  I feel each time an inchstone, yardstone or milestone is reached.

Zack’s made a lovely start to the new year at school, going back as though he was going home – it is wonderful to see how happy he is there and vindicates that dreadful, painful decision we made to send him away from home.

And today I received a phone call from staff at the school – usually a source of anxiety, frankly.  In fact, not so long ago, the phone call was to inform us that Zack had gone missing – the darling kid had gone walkabout in the forest and only returned three hours later.  Anxious parents, anxious staff, police etc etc etc…  So a phone call from school is always a little unknown.

Happy news!!  Zack has been invited to a friend’s house for the weekend to celebrate the friend’s birthday.

Inchstone?  Well, in one sense yes.  We know that Zack should be fine away from “home” for the night, and given his summer, I have every expectation that he will do me proud.  How lovely to have a little part of me think “yes, absolutely”.

Yardstone?  Yes!  Birthday parties have not featured heavily in Zack’s life.  Friends have not either.  One of the wonderful things about his specialist school is that all the boys have a lot in common, and are far better able to forge friendships than in a “normal” school.  So it is a joyous thing to hear that he is thought of well enough by another boy that this boy wants to share his home, his weekend with my son.

Milestone?  Oh me, oh my!  The trust involved in allowing him to go somewhere completely new, to a house I’ve never visited, for a whole weekend?!  There’s a very normal “Mum” emotion wanting to keep that little bubble around him and never ever burst it.  There’s a very “Benedicte” emotion not wanting to make another parent’s life difficult.  There’s the knowledge that trust and Zack don’t really go well together.  So what’s the right decision??  Once again, school to the rescue!!!  With lots of thought and consideration, staff feel that this is a good step.  This friendship is progressing very well and is worth nurturing.  And actually, one of the main aims of the school is to help my darling Eldest to grow up – this weekend away will be a little step in that direction.

Inchstones, yarstones, milestones…

Every day, in every way!

I’ve no doubt I will be a little on edge between Friday and Saturday… but by inch, yard and mile, we’ll make it to Sunday and have a huge achievement to celebrate!

It’s the end of the holidays!

There’s a little tingle in the air, a sense of anticipation.  Anxieties are running a little higher, excitement is too.  It may not all be good, or easy, or straightforward.  It may not all be what we want, but finally after weeks and weeks of waiting, there’s a feeling that soon we will be on the move once more.

Today marks the beginning of the end of the summer holiday.  That vast expanse of time to fill, thanks to cultural and agricultural traditions which no longer bear any relevance to our lives.  For stay at home parents like myself it’s one thing to have the children home and entertain and cook and clean and somehow keep them from tearing each other apart.  For those who work I can only imagine the nightmare of planning that must go into these 6 long weeks.

In a family of children with special needs, the summer holiday can be a terrifying prospect.  None of my children can attend run of the mill summer camps or days out.  Any outing requires meticulous planning and most often is cut short due to the range of difficulties the three of them experience:  one outing may be ideal for little man, but be overwhelming for Princess; another may be perfect for Eldest who desperately needs intense physical exertion, but wear Little Man out before we’ve even started.  A swim was shortened because he became so cold that we simply could not stay.  An outing to the ice rink was too much for Sweet Girl as she contended with noise, movement and failure and began to shut down.

Eldest Zack has Asperger’s syndrome.  His tendency towards obsession is at best rather endearing and quirky, and allows him to delve into certain subjects with remarkably perseverance.  It does, however, take over every single aspect of his (and our) life.  This summer (indeed, this one has been going strong since Easter), the obsession is Minecraft.  Don’t get me wrong, I see a lot of positive aspects of this online building game.  Zack has constructed remarkable structures and demonstrates once more that his spatial perception is creepy good!  But he has spent the last week downloading “mods” and talking of nothing else.  His sense of time is extremely limited and convincing him to come away from the laptop always involves a major battle of wills.

So as time goes by, I begin to hate Minecraft!!  Which he in turns interprets as me hating him… long talks ensue to fix that particularly little problem.  And we find ourselves in a very difficult position trying to allow him to enjoy his holiday whilst not disappearing into a parallel world.  As things stand, with his return to school tomorrow, we have reached that delicate time when a “reboot” is necessary.  He has allowed basics such as personal hygiene to slip somewhat, and anything outside his laptop causes difficulties and outbursts of temper.  How fortunate we are to have the support of such an amazing school which will effect the “reboot” so well.  It does leave me a little sad to think that if the holiday were two weeks shorter, we would not have arrived at this point, and he would be a great deal happier.

Sweet Girl Kesia has had a good holiday and has really benefited from the peace and calm of the last three weeks.  She is now medicated for the anxiety she experiences as part of her Asperger’s syndrome and we hope (oh my giddy aunt if you could see the crossed fingers and toes in this house!!) that this medication will help her.  However, as the time for school to start approaches, the small effect of the medication that we could see have vanished – anxiety is a powerful thing.  She very badly wants to go to school, but simply cannot manage the environment that surrounds her in our lovely but mainstream school.  All our hopes are now pinned on tomorrow’s meeting to address how best to “phase her back in” to this new school year.

Little Man Tom… Oh me oh my.  The facts are abundantly clear that he needs a different school.  He simply cannot keep up, nor does he have the social peer group that would give him a chance of coping with the academic delay he has.  The Authorities see it differently.  The Authorities, I cannot help but feel, are far more interested in their short term budgets than the welfare of the kids they have in their care.  Which actually is a fair point.  Special schools cost a lot of money.  What I wish with all my heart is that these same people would look at the cost in the long term.  Because my children, all of them, have the potential to be valuable and valued members of society.  With the right skills and education, they can and will live independently, get and keep jobs, and generally make themselves useful.

But… let them down now, and each of them in their own different ways could easily end up utterly dependent on their family and the state.

Overall, a special school now will cost less.  Far less.

And that’s not counting the emotional cost of a family in disarray due to children in free fall.

So…

I have spent the last six weeks waiting.  Trying to keep all these little people happy in their holiday, knowing that there was nothing, absolutely nothing that could be done about any of these situations until September.

September is arriving!!!  Battle armour on, smile in place (smiles tend to achieve more than screams), determined stance at the ready.  Phone is working, computer and typing fingers too.  I have some really special people with me and behind me, so here’s hoping!!!

On that note, I have to say an especially huge thank you to Mark Brown from Special Help 4 Special Needs.  Known by many as “the child whisperer”, Mark has help me with all three of my sweethearts, and I would recommend him to anyone whose special needs child needs help.  Not only does he have a phenomenal affinity with these kids, but his experience of the “system” lead him to give sensible and practical help when needed.

In the meantime, Eldest Zack is packed and ready to go back to school tomorrow!  Swett Girl Kesia and Little Man Tom are far more in Limbo, but work starts tomorrow to help them.

I feel good.  And extremely glad to have got to the other end of this ridiculous, 6 week farming time.  Maybe one day we will have the courage to question the validity of doing something just because it’s always been done that way.  That, or I have to send my kids out to farms all summer to be useful!!!

Creating memories… but paying the price

For our last week of holidays, darling man has taken some time off work.  Not as much as he’d like but the compromise is rather lovely – early mornings into work then back hom by half past ten for family time.  Yesterday was our first such day and he really enjoyed taking big boy and princess out for a bike ride to the common.  Little man Tom was at Cherry Trees enjoying making rice crispy cakes and chilling out with a few films.  I had a little taste of holiday as I went into town to buy a cake tin – angel cake was baked as was a rather delicious meatloaf.

Today, swimming was the plan.  Since starting his weekly hydrotherapy sessions, Tom is much more confident in the water and far less likely to vomit, so I am fairly happy to venture into public pools.  But he does get cold very quickly and extremely tired.  Weighing up the pros and cons we decided to arm ourselves with his wetsuit, throw caution to the wind and deal with the probable ear infection that will follow in order to enjoy one of Tom’s (and the other kids’) biggest pleasures.

Off we went to the local leisure centre.  I have to say, I’m impressed with their renovations – very large, well heated family dressing rooms and lockers big enough to fit a family’s paraphernalia.  The pool is a plain and simple one which works very well for me on two levels: entry cost is affordable and it is much more peaceful than the fancier all singing all dancing leisure pools.

We had a truly wonderful time.  Zack and Kesia showed off their swimming with Daddy, and we were able to stay long enough for Kesia to settle down and brave the deep end (if only she could believe how well she swims!).  Tom had a fabulous time splashing in his ring and swimming in the little pool… all good.

In his wetsuit he managed very nearly an hour and I’m proud to say that once he had had enough the other two came away with very little fuss -how difficult it is to have a younger brother with special needs.  It always seems that life is lived on his terms.  I hasten to say “seems” because in fact, the various special needs of all the children do mean that the playing field is in fact very level!!

We had planned an outing to Costa Coffee and duly drove into town.  The children were very excited at the thought of drinking their baby chinos (these are a new and still delightful treat, and one I am thrilled to offer them – a simple yet true pleasure!!).

To be fair, it was a decision taken with a little trepidation.  Our sweet girl was tired and very over-reactive.  Little man was also clearly exhausted and he hasn’t looked well for a number of days now, so the chances of a longer outing going well were diminished.  But with everyone keen to give it a go, off we went.  Fortunately we managed to keep things going until the last drop of chino was drunk, and the last crumb of cake gobbled by my big boy who despite the deep voice and hairy bits does still look like a little boy with chocolate all over his mouth!

As ready as we often are when an emotion explosion occurs in our family, it’s still pretty impossible to foresee the trigger, thereby avoiding it.  In this case, a little girl walking past us trod on Tom’s toe.  She should have been looking, she should have been more aware of her surroundings, she should have even said sorry.  But as we all know, life doesn’t often happen the way it should.  My son should have said “ouch”, maybe had a little tear, called for me etc… Certainly he should not have whirled around to her and shouted “oy” in such an angry manner.  I have to say I’m pleased that the little girl didn’t even notice him.  I certainly did.

Knowing how tired he was, I trod lightly, if firmly.  Unsurprisingly he did not respond.  Surprisingly, he ran away.

Now, I am reaching about four or five years of having a child in my life who runs.  It is a horrible experience, and one which robs you of all control.  A child who runs like this has little if any awareness of danger in that moment, and will likely run across roads without looking, may hide from you and who knows how they may react in the face of a stranger approaching them.  In my experience, if you attempt to come towards them they will run faster, further and more out of control.  It’s important to realise in this situation that the adult has no control over the situation which is frightening as a parent, but worse still, the child has no control over their reactions.  Not a good thing for anyone.

Given my knowledge of my children, in most cases I know that the only thing I can do is nothing.  I will probably appear calm, maybe even indifferent to the casual onlooker.  I will continue “chatting” with the remaining children, walking at a normal pace, and I will seem not to be looking in the direction of the runaway.  Please do not judge.  Under the semblance of indifference and lack of care, I am wound as tight as a spring.  I am looking for the tiniest opening to reach Runaway, judging how best to approach him or her.  Will I be able to talk them down, will a gesture be enough to bring them back, will I need to use some physical restraint?  Each situation is slightly different to the last but they all share a precarious unpredictability and a sense of imminent danger.

Today was the first time that Tom has runaway – clearly this is a behaviour he has seen and lived with thanks to his siblings and today was the time when seeing turned to doing.  So it was essential in my eyes that I make it clearly and totally unacceptable behaviour – Tom is by far the most physically vulnerable of the three, and looks about five years younger than he is – not a good mix if he is seemingly alone.  When I told him I would have to hold his hand on the way to the car, he did not take it well.  He was still very angry and upset and combined with extreme tiredness, he was simply unable to make sensible choices.  So there we were, Tom trying to fight me and run away once more while I held his wrist to stop him doing either… And I was struck by how tiny and skinny my little chap is.  I was so careful to hold him in a way that could not hurt him, and yet he was fighting so hard and with such leverage that I found myself worrying about his arm.  Luckily, I was able to keep a hold onto him while dancing around to stop him hurting himself.  But I am left with a feeling that he has lost yet more weight, and that checking his bone density might be a sensible thing to do.  If he begins to display the kind of behaviour he has seen from his siblings, I’m going to need some guidance on how best to keep him safe.

One question remains… how to make sure a message is understood?  Running away is dangerous.  I am guilty at times of talking too much, I realise this.  So.  Simple words.  Few words.  And then just deal with what comes next.

Mostly, despite having had a lovely afternoon I have learnt that it was too much for little man Tom.  Pacing is the name of the game, and a bonus is that in the future, a trip to the swimming pool and a trip to the coffee shop will fill two days, not just one 🙂 .