untangling this thing we call life…

Category Archives: Kesia


Darling Girl,

From the moment you existed, you have stood alone exuding a strength and determination which take my breath away. I knew you were anchored inside me only two days after you were conceived… not as a part of me as I experienced with your brother, but as a distinct, separate entity.

As you grew in that little bubble of amniotic fluid, you continued to fill me with a sense of confidence. I felt a sense of unbelievable peace and confidence that you were growing exactly as you should, that I had no need to worry about you. You know your Mummy well enough to know that I am a worrier, and this is the first gift you gave me: an absence of anxiety, the most marvellous gift!

Once you were born, that sense of survival continued… you were such a quirky, beautiful, odd little baby. Doing things in your own time, in your own way and utterly determined not to be swayed by anyone (possibly apart from your Big Brother). That independence and determination filled me and fills me with pride and joy. After all, I never wanted to be a mother in order to “have” children. I looked forward to growing you, and helping you grow (cooking you, if you will) into independent, beautiful adults. You seemed to take that on board from the very beginning, and it is something I have always loved about you.

Kesia at the Well Child Awards, having been awarded “most Caring Child”. She has never believed she was worthy of this award, but I hope one day she realises how special she is.

In one sense, you have always been “cooked”. Your eyes have always been deep and filled with the wisdom of a thousand years, yet you are still my little girl. You may not like or want those close cuddles and physical signs of affection, but I know in a million tiny ways how much you love me and depend on me.

In other ways you are so very little, and so very needy. And you take my breath away in your ability to surrender to that part of yourself, and to come to me or Daddy for help. Even when those pesky words just won’t come out, you find a way to say “please help me”, and let us know just as soon as you are able that those angry sounds just came out wrong.

I love and hate your ability to apologise so sincerely when you know you have done wrong. You have a strength of character that I simply do not, and you push me to find the best in myself so that I may respond in kind and forgive you as quickly and sincerely as you offer your sorry. You are quite a teacher, and I love you for it.

That growing girl in her element!

 

When I look at you, my Darling Girl, I imagine that if sunshine were to solidify, it could not find a shape much better than your heart and mind and soul…

So the next time that you worry that I may be sad that you do not like hugs… remember these things. Remember that you are precious far beyond my ability to hug, or speak or write. I am simply tremendously happy that you are You, and that you are part of my life.

Thank you, sweetpea!

Your Mummy

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I am currently basking in an uncommon wave of calm.  Just enough has moved forward today to make me feel that things will indeed be alright in the end.  Not a great deal happened.  I had a two hour long conversation with a psychologist who left me feeling that she understood how seriously Sweet Girl must be taken.  As we ended our talk she also let me know that she agreed with me about the need to sort out Little Man’s schooling.

Do I really have an ally at the Authority???  Maybe!

Sweet Girl’s teacher also made a decision which I think may make a vast difference to her school life.  In order to allow Kesia to stay with one teacher, in one classroom all day, she has changed maths groups.  It was a brave decision by a teacher to compromise a little girl’s learning by dropping a couple of groups in order to help her attend school ?full time?!  And one I am extraordinarily grateful for.  Sweet Girl came home at lunchtime more stable and happy than I have seen her in months.

The storm is raging outside.

Our ongoing battle with the Authority for Little Man is in full swing.

A new battle with the same Authority looms in the near future for Sweet Girl.

I was obliged to send a letter into school this morning which promises side winds of gale force strength.

The storm is battering at my door.

But just now, I am in its eye.  I am happy, and calm and enjoying this moment of brief respite!



This is a short list of expressions that cause Sweet Girl untold and unforeseen pain.  All those innocent little expressions we adult use to “help” children who are struggling to do something – those with special needs and those without.  In Sweet Girl’s case, this is one area in which her autism comes to the fore.  She misinterprets the words you use, the tone you use, the body language you use.  Add in her extreme desire to do the right thing and please, and her severe anxiety, and you have a recipe for disaster leading to a little girl in extreme mental distress…  I hope this helps her, and I hope it helps some of you too!

What you say What Kesia hears Emotional consequences What you might say
Come and help me do … I must go and help or else… Kesia takes on responsibility for your emotional and physical welfare I’d love to share this activity with you OR Would you like to help me with…
You can do this I don’t feel I can, but the teacher is telling me I can, so I must be wrong and I must somehow do this The strength and will power required of Kesia to do this will leave her feeling exhausted and deplete her resources for the next day. Each time that same activity occurs, she will put herself back into this state and long term will simply be unable to continue with anything. The exhaustion will also impact on every other aspect of her life. Well done for getting this far… OR How do you feel that went? OR I think you can do this, how do you feel about it?
I can give you this help because someone else is doing my job Because of me and my failure, you can’t do what you want and should be doing Guilt mixes with her initial anxiety and plunges her deeper into an emotional state over which she has very little control Nothing. Any suggestion that your support comes at a price will result in Kesia not accepting it. She will only see that she is an obstacle in your life and will become more and more upset. IF you are able to, try transferring to someone else, but otherwise the only safe thing to do is call home
We must get a move on because… (time restriction) I hear you are in a rush, but can’t you see I’m trying my hardest to do what you want me to? I just can’t!! In addition to her starting anxiety she is now feeling that she must at all costs do what is needed. Her body and mind won’t allow her to, so she adds guilt and self blame. Left in this state, she will start to hurt herself. Don’t put time restrictions on her. If you need to hand over to someone else, do. If you can’t, then we are back to the reality that school can’t meet her needs. I am on call as much as I can possibly be because her safety both physical and mental are my priority
What you say What Kesia hears Emotional consequences What you might say
You are so clever, I’m worried that you may fall behind and that would be a shame I’m falling behind. You are worried. Being worried is awful, and I’ve made you feel that way. Guilt comes once more to sit on top of an initial anxiety about her environment. Her concern for you is so great that she will sit with that guilt for days after such a comment. She will also stew in worry about her own progress which will heighten her anxiety, making it even harder for her to access learning. This piece of work shows me how clever you are, well done. OR I’d love to see a piece of (type of work) from you. If you feel you can’t manage to do it at school, would you take it home to do?
I’m worried… OR a worried look, frustration, anger… any negative emotion displayed orally or physically I’ve made you feel worried, and I know from personal experience how awful that feels. It’s really important to shield Kesia from any negative emotions. She will don them like a second skin and live them for you, to a far greater extent than you probably feel them. She doesn’t have the ability to survive that. Kesia spends her whole time analysing facial expression, tone and body language. She frequently gets them wrong and has very little idea of intensity of expression. She takes full responsibility for your emotions. It’s really important to try and stay as calm and neutral around her as possible.
You really should… It’s going to be so much fun!! I really should… I’m supposed to have fun. If I don’t, I will have failed both myself and you. Fun is a subjective thing. Kesia may well feel more frightened by a “fun” activity than you, but will feel compelled to push herself extremely far out of her comfort zone to make your words true. If she fails, the consequences are long and severe. She will be utterly convinced that she has failed you, and that will last a long time. If she succeeds, great, but the adrenaline rush afterwards will be so large that she is likely to be exhausted and will require extreme support, calm and tolerance of the ensuing “high”. I really enjoyed doing this even though… OR He didn’t like it, but she had fun OR Do you think you would enjoy it? – leading to a conversation in which Kesia is able to air any concerns she may have


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…



Trudy is really quite special.  For those of you not yet in the know, each family has a named Tooth Fairy.  She is responsible for collecting and grading baby teeth, and leaving a small reward for each loss.

As a mother, I have the privilege of knowing our Tooth Fairy’s name, and having access to her email address.  Until recent years, my communication with her was through my wardrobe (this also gives me access to Santa’s elves and emergency access to the Special Toys division – a necessary tool when Blue was lost temporarily as it allowed me to give Eldest Blue’s twin, LB… Loving Bear), but the Tooth Fairies are nothing if not technologically advanced, so Trudy and I communicate by email.

Now, much as I love Trudy and appreciate her work, she is in all honesty a bit of a flake.  I have three children, all of whom fall under her care, and I believe I’m right in saying that she has never, not once, arrived in time.  Most children lose a tooth during the day, and find a toy or coin under their pillow on the following morning…  Not mine.  Trudy’s best timing has been to arrive a few days late.  This summer, however, saw her beat all of her past lateness records.

Sweet Girl lost a tooth at the end of July.  It was a big one, a molar and she was very excited, as her tooth loss rate has radically slowed with age.  Kesia has a rather good relationship with Trudy through letters written by both and left under her pillow.  For though Trudy is often late, she has a lovely soft heart and usually writes a letter to explain her tardiness and apologise for it.  Sweet Girl has a soft spot for her teeth, and finds it quite disturbing to think that her teeth are somewhere unknown, so she had previously asked Trudy to leave her tooth and written her a letter to that effect in which she candidly admitted that though she would like her customary coin she understood that this might not be possible.

The following week, when Trudy had finally managed a visit to our house (on that occasion, I believe her wand had broken down and she had found herself stranded at the office), not only did she leave a coin for Kesia, but also left the tooth and a note explaining that she had obtained special dispensation from her boss, Prunella, to leave the tooth in situ.  She does have to visit in order to leave a coin and grade the tooth, but it seems that with this dispensation she is still able to transfer enough magic from the tooth to her wand to warrant leaving payment.

Sweet Girl is very aware of Trudy’s kindness, but also her flaws.  She, along with her brothers,  never expects Trudy to come on time; not does she expect Trudy to remember much from one visit to the next.  So when she lost this tooth in July, she prepared it by putting it her special “lost tooth” pillow together with another letter reiterating her desire to keep her teeth, but also to receive a coin…

A week passed, then another.  Sweet Girl patiently waited.  Another few days, and she let me know that Trudy had not been.  I duly promised to send an email as a reminder to our sweet but absent minded Tooth Fairy.  No reply!  And I have to admit I then forgot entirely about this tooth.  Sweet Girl did not…

August passed with no visit from Trudy.  This was quite a record, and I became a little concerned for her.  She had never been quite this late before.  I sent another email, and copied Prunella in.  Immediately, a reply from Prunella came through:

Trudy has been out of TFHQ contact for several weeks now.  We have teams scouring the Earth and FairyLand for her and will inform all her families when we have further news.  Should you hear from her, please let me know.  In the even that you cannot reach me, please ensure that you inform the Duty Tooth Fairy Manager at TFHQ.

As you can see, Prunella is not to be trifled with.  To be quite honest, I find her a daunting person; though she gets the job done and is phenomenally efficient, I have to admit I prefer Trudy.  With all her flakiness she is lovely and sweet and always makes me smile.

There followed some nervous days and weeks.  Each morning, Sweet Girl would check her pillow, and her face was a little sadder with each passing day.  We were all quite concerned about Trudy’s fate; after all the job of a Tooth Fairy can be quite precarious.  Flying all over the world, assigned families with varying beliefs and customs can lead a fairy into quite treacherous ground at times.

Mid September, and Little Man lost a tooth.  We all held our breaths!  Now Trudy had two teeth to collect from our house… would she make it?  Would this extra tooth call to her and lead her out of this unknown exile?

Would you believe it, but the following morning, not only had Little Man’s tooth gone, but two coins had been delivered along with two letters from Trudy!

I did not capture the joy on those two little faces in the morning, nor Sweet Girl’s relief that her Tooth Fairy was alive and well.  Let me simply say that we had a truly magical morning.

And here is the marvel of Trudy, our Tooth Fairy.  She knows of the children’s abilities ever so well, and has always written them letters that they are able to read themselves.  So Tom’s letter was a beautiful, and simple one:

I especially love the personalised notepaper, the tiny letter, and the fact that she has chosen an orange font!  Somehow she knows Tom’s favourite colour!  (She also knows that Eldest is “above” such things as fairies, and has not bothered him or his teeth for the last couple of years…)

Kesia, on the other hand, already has a rather established relationship with Trudy.  An explanation for her prolonged absence was duly required, and given…

 

Dear, dear Kesia,

Oh my goodness, what has happened?  There I was, on my way to your house last August, because my bell rang letting me know you had lost another tooth. Now, I do know that you would like to keep your teeth, and Prunella has given special permission that you may do so, but I still need (and want) to visit you.  One of the reasons for this is that I must measure your tooth for our records.

Anyway, there I was flying over the English Channel, when I got swept up in a timey-wimey cloud (strangely enough, it was slightly purple).  Next thing I know, I’m in the bedroom of Queen Victoria’s youngest daughter, Beatrice.  I remember her very well, because I used to be her Tooth Fairy too.  Her mum always used to call her “Baby”.

Unfortunately, my wand (as you know it does tend to break down quite a lot) chose this moment to go on the blink.  It simply would not communicate with Head Office, so I couldn’t tell Prunella where (or when) I was.  Baby is luckily a bright little girl, and when she saw what a desperate plight I was in, called her mother. Being the Queen, Victoria has special dispensation to see fairies face to face, and she arranged for a special visit to the Victorian Tooth Fairy Minister who eventually (after a lot of paperwork) managed to send me to the correct time.  Time travel is rarely a precise thing, however, and I arrived yesterday – having missed two whole months!!!

So here I am… I’m very impressed with your tooth, it holds a remarkable potential of fairy magic in it.  Keep it safe and it will give you strength when you need it most.

All my love, your tooth fairy,

Trudy

Trudy may well be a flake, and she may be responsible for any patience my children have developed… but she has a wonderful heart, and I wouldn’t change her for the world.

In a life of tangles, the simple pleasures of tooth fairies and other magical creatures are a joy!

 

 



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.



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Little Man, aka Godzilla, King of Destruction

In one long day spent with my two sweet if high maintenance home children, I had already experienced something of a rollercoaster with Sweet Girl.  The morning was a fabulous, wonderful high that I am leaving for last on this journey of three posts, because the third event of that day (now forty eight hours in the past!) is distinctly less pleasant.

So why revisit it?

It’s simple really.  It happened, it was a big event this week, and I’m hoping that by marking it I can make sense of what happened a little, and remind myself that things can improve as well as explode sometimes.  And in this instance, writing Thursday’s explosion gives me a marker in time to see how well we improve!

Little Man has an explosive temper.  I don’t believe this is part of his basic personality which is largely easy going and happy.  However, growing up with an older brother who is almost always angry and enraged, and a sister who is almost always anxious and intolerant is going to affect the most laid back person.  Add in the curve ball that is chronic illness and constant doctors’ appointments, tests, needles, treatments, therapies and an increasing awareness of being different to all the other kids in your school, and you have the ingredients for quite a lot of unhappiness.  Little Man Tom is a bright button, but he has learning difficulties.  Of what nature is far more mysterious, but I do know that his memory works in very strange ways, and that he has a very flaky understanding of the practicalities of life (compared with other kids his age).  With all these factors playing a part, he is a little boy with a VERY short fuse.

Thursday morning, following an amazing riding lesson, we arrived home for lunch.  While I was preparing this lunch which was by no means late, Sweet Girl and Little Man were playing.  She became quite considerably upset when he wanted to rename one of her teddies temporarily.  Sweet Girl had morphed into Queen B**ch, sotto voce…  Little Man does not do sotto voce, and so the first inkling I had of this fight was his loud, shrill voice yelling at her.  My attempt to a) separate them and b) help them sort out what was clearly a trifling sibling issue was thwarted by Tom’s about turn as he directed the full force of his anger and hurt at me.

Now… I am patient, and understanding.  It turns out, as often, that Queen B**ch was totally in the wrong, and his anger was primarily confusion and upset at her reaction to an act of kindness.  All of this was to come out much, much later.  However understanding I may be, I have very little tolerance of being used as a punching bag.  I have experienced this both literally and metaphorically at the hands of Eldest and Sweet Girl, and Little Man has now joined the party.  At no point have they ever seen me accept such behaviour.  There have ALWAYS been serious consequences.

And yet… here we are again.

I was able to curtail the lunchtime crisis and accepted the rather sullen sorry from both Little Man and Sweet Girl.  Queen B**ch had retreated in the face of my exasperation, and actually Sweet Girl is beginning to accept her inner Queen and therefore control her a little better.

Fast forward to the end of the day.  9 hours of solid, intensive, supportive parenting.  I love them completely, but I really needed a little bit of “me” time.  Given the last few days, I wanted to spend a little time at the piano in the hope of recapturing the glimmers of peace I had found there the previous day.  The Offspring were in the sitting room, apparently playing nicely.

For all of 4 minutes…

“LET GO!!!”

“IT’S MINE!!!”

Oh yes, dear readers, I got FOUR minutes of peace.  (Needless to say, not enough to find even a hint of a glimmer.)

Gentle, patient voice: “I think you need time apart, just move away, I’m coming”

More screaming.

Patient Mummy morphed, much as Sweet Girl had earlier.  9 hours, I spent with these two!!!  To cut a long and, let’s face it, boring story short, I spent 45 minutes shouting at them!  I don’t do shouting very often, it’s proved to be totally counter-productive.  But I had had it!

The facts:

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Sweet Girl wanted to use a step-stool given to Little Man by Nanny.  He was not using it.  But on the basis that “it’s mine”, he became immediately aggressive and possessive about it.  Kesia reasonably wanted to continue using it and resisted.  Little Man morphed into Godzilla, King of Destruction and charged to take it from her.  Screaming ensued and I intervened.  So far, so banal: brother and sister and a good dose of stupidity.

Unfortunately, much as earlier in the day, Godzilla, King of Destruction showed once again his utter lack of control and turned his gaze and wrath onto me… wrong move!!!

Hence, forty five minutes of me shouting!

Sweet Girl had the good sense (only recently discovered) to stand in a corner of the room facing me and looking downcast and apologetic.  Godzilla, King of Destruction did not, and took forty five minutes to finally realise that this was a fight he could not win.

It was harrowing, especially after a day which had already drained me of all my parenting energy.  But I do think it was worthwhile.  As much as I have to take into account Little Man’s difficulties, fatigue and the problems that will necessarily follow the exhaustion of a temper tantrum, there are occasions when it’s important to let him know that he cannot get his own way by whining, or worse, fighting with Mummy.

I haven’t found a solution to help him.

I’ve used pictures, to help him understand the step by step nature of his arguments and emotional meltdowns.  I’ve used reward charts and consequences, warning cards and words, distraction techniques and relaxation techniques.

I’m no closer to feeling that he understands what’s going on.  And if he doesn’t understand it, I’m not sure how and if he can learn to change his behaviour or control his emotional outbursts.

At the moment, we know that he’s not well.  His weight is not good, and just by looking at him you can see he’s quite sickly.  He’s started throwing up again (hasn’t done that regularly for a good few years now), an he’s tired all the time.  He experiences headaches daily and we don’t know why (another thing to investigate).  Clearly there is a link with food, and I’m sure you all know of someone who becomes ogre-like when they need to eat.  But what is going on with Tom and food is anyone’s guess…

Little Man is not short of valid excuses for emotional rocky seas.  But as his mother, I cannot allow him to behave in ways which will cause him great harm long term.  Somehow, I have to teach him to deal with disappointment and frustration in a way that is socially acceptable.  I don’t feel that I’m very far along that path.  I’m trying, day by day, step by step.  And I’m ALWAYS open to suggestions.  Given the wide range of difficulties I’ve experienced already with Eldest and Sweet Girl I may answer with “done that”, or “no, that won’t work”, but mostly, I try and see if those suggestions can in any way be useful…

The last couple of days have been better.  I have cut off Little Man’s tantrums just as they are about to begin and although it’s been tough, they haven’t escalated.  I’m hoping that by marking this big one in time and in writing, I will be better able to help him navigate the next one!!



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