untangling this thing we call life…

Category Archives: Asperger’s syndrome


parking_place

photo by Robert Rickhoff

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

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

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

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

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

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

Yet…

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

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

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

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

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

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

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

 



After all the battles, worries, stresses of helping three children navigate early childhood in spite of various disabilities; of clamouring at the doors of agencies whose role is to help support such children, but who are understandably all too aware of their budgets; of maintaining some kind of family “normal” and endeavouring to seek out little pockets of fun and Happy…

After all that, here we are:

All three children are Safe.

All three children are in an environment utterly suited to allow them to Thrive.

All is well.

[Just to be sure… the difficulties and needs have not vanished. They remain, and cause hiccups weekly, daily, sometimes hourly. But the external source of constant anxiety has gone, and we are experiencing something close to normal family life for the first time.]

One of the aspects of my character that has been most tested in the last decade is Trust. I am by nature an extremely trusting person, and also fiercely loyal. Once you have earned my trust, I will be utterly loyal to you even in the face of apparent difficulties and even betrayal. This has seen me bitten, and I have no idea whether it is a positive or negative aspect of my personality… it simply is.

So in this spirit, when the first raft of professionals entered my life, I trusted them. Each and every one had my Trust as a starting point. I’ve often been told that was and is naive. It is beyond my control, it simply is.

It will come as no surprise to any parent of special children that I have been battered as a result. A few months ago I sat in the paediatrician’s office in tears, telling her that I had become cynical and jaded, and that this above all else was breaking me.

I do think on the whole that I have retained my ability to Trust, but every now and again, I question myself. For someone as riddled with self doubt as I am, this is frankly exhausting.

A Child is struggling (no surprises!). From the outside, it would appear that school are doing very little, and showing very little concern for his abandonment of any pretence at learning.

I Trust. Everything in my being tells me that they care about that Child, and I know they have the experience to deal with him, so I Trust.

Until a day comes, as it did today, when self doubt enters the mix of legitimate anxiety and “special” management of the Child. Self doubt tells me that maybe I should be doing more. Self doubt asks me if school is doing what they should. Self doubt tells me that school have not been in touch for a few days, that I have not seen paperwork and plans. Self doubt tells me that I am a Fool to Trust.

And in voicing such doubts to friends, I am met with legitimate, understandable questions: maybe school should be doing this, and that and the other. After all, the Child must learn to do what is required etc…

Self doubt grows in strength, bringing with it its groupies, Panic, Anxiety and Tears.

Luckily, I know this pattern. I live with self doubt in uneasy truce, but I know his ways and I am ready.

I called the school.

And a simple fifteen minute conversation confirmed that Trust was right. That all the measures fed by years and years of experience are in place. That the Child is not Lost, that he is Cared for, Supported even though he may not like it, or realise it.

The call was a good one to make. I was able to speak of my need to feel a part of the Team again, and school agreed that they could help me with that. I allowed Trust to win, and I allowed school to reassure Me… to tell me that what I am doing (or not doing) is allowing them to best help the Child. That there are no magic wands, but that slowly and steadily we are on the right track.

This… this is what I have striven for.

Not the eradication of disabilities, of differences, of difficulties.

Merely the right support and knowledge to allow my family to experience life in as normal a way as can be (warts and all), and allow my children to thrive.

And I am deeply, deeply grateful to live in a country where that is possible. As difficult as it may be to access this help, at least it exists.



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



I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.

I ask for things I tell you my children are entitled to, and the passion that fills my voice, the knowledge that comes from hours of research, the tenacity that fills your inbox leads you to only one conclusion: I am asking for the world. Or at the very least, a sizeable chunk of the budget you are held responsible for. I ask for my Dream…

And suddenly I am struck with a thought… You must believe my Dream is the dream of a spoiled child with no sense of reality… You must believe I am demanding. A scrounger maybe. Out for something every parent wants, that exists only for the elite few with the funds to provide it. You have told me often enough that “the law allows for every child to have an education appropriate to his needs, Mrs S. That does not mean a Rolls Royce education”. Because as much as we would all want that, a state funded education cannot be a Rolls Royce education unless we are all willing to pay substantially higher taxes.

I have always been struck dumb by this statement. And it came to me today that the problem comes from a staggering disparity between what my expectations are, and what you fear them to be. (My expectations are surprisingly common amongst my friends and all the other “Special Parents” I have had the fortune to meet.)

Welcome to my world, my family. Welcome to my children, my aspirations and my expectations. Welcome to my Dream.

Let’s begin with a little boy, aged 6 a while ago, recently diagnosed with Aspeger’s syndrome. I want my little boy to experience more than one day every few weeks during which he does not feel so desperate, so afraid, so lost that he begs me to kill him. I know that his intellect is astounding, that a “normal” parent would be wishing for that private education that offers small classes, top of the range equipment, exam tuition. That normal parent would be expecting great things, scholarships, university and the sky.

Let me tell you of my aspirations for that Boy, and my expectations.

I hope that he finds some inner peace. I hope that he finds himself able to pursue an activity that gives him a sense of satisfaction. I hope that he is able to live independently.

I expect that he will attend a school staffed with people who understand the complexities of his “condition”. I expect that he will be emotionally and physically safe primarily, and that he will have access to academic education that will allow him (if he allows himself) to learn and progress intellectually. That. Is. It. The sum total of my expectations.

Secondly, we’ll find a little girl. Emotionally so vulnerable due to her childhood circumstance on top of Asperger’s syndrome that she spent the entirety of her junior schooling (aged 7 – 11) in a state of almost constant panic. Once again, exceedingly bright and able, willing to please and to learn. The “normal” parent has her education all planned out: tutoring and scholarships, early exams no doubt. Extra-curricular activities include gymnastics (she was chosen for an exclusive group due to talent), swimming, music. Her all round ability stuns that normal parent so much that the sky itself cannot limit her.

So here are my hopes and dreams, my aspirations for this amazing Girl:

I hope that she learns to tolerate the world. I hope that she allows herself to be loved. I hope that she finds a little corner of the world to call her own, and something to do that will give her a sense of accomplishment.

I expect that she will be able to go to school and be emotionally and mentally safe. I expect that she will not be in “fight or flight” mode every single day of her school life. I expect that her particular brand of autism will be understood and that her teachers will know to give her time to express herself. I expect that the educational system will allow for her to take some exams early, and some late to allow the time and space she will need to achieve. That will do… very nicely.

And then lastly, we have the Little Man. He has a range of medical problems, some moderate learning difficulty and his social isolation caused by being different has made him very fragile emotionally. My “normal” couterpart would have seen this little boy in all the drama clubs, sports groups (I’m removing the physical complications here), parties galore. He is the clown of the group, loved by all and entertainer extraodinaire. I’m out… this little boy’s history is such that a future was never dreamed of, and so every day, every year is a rather miraculous bonus.

But here we go… here are my dreams for him:

I hope that he is well enough to live, and enjoy living. I hope that he is well enough one day to live independently. I hope that he will have friends.

I expect that when I send him to school in the morning, I can be sure that any medical emergency will see him as safe as possible. I expect that he will be looked after by the adults at school, and that he not be the expert in his own medical care. I expect that his schooling take into account his physical problems. I expect that the staff at his school be in regular contact with me so that we can ensure his long term health. I expect him to have “peers” at school… a group, however small, of children with whom he has enough in common to forge relationships.

I do not believe that I have described Rolls Royce education in the way you describe. I believe that I have describe some basic conditions that we often colloquially refer to as human rights. I believe that I have asked that each of my children:

  • Be physically safe while at school
  • Be emotionally safe while at school
  • Be able to learn within his or her intellectual, physical and emotional ability

Do not be afraid of my passion, my despair, my anger. They stem from my heartache at seeing children flounder much as fish do out of water. They stem from my feeling that as loud as I shout, as deep a river I fill with my tears, as much knowledge and evidence I provide you with, you do not hear, you do not care, you do not acknowledge. They stem from the knowledge that as simple as my Dream may be, it seems as far from me as Fantasy.

Please show me that my feeling is wrong. Show me that you hear, show me that you care, show me that you have read that evidence, that you acknowledge that I know many things about these particular children that you cannot because you have not lived with them.

My expectations are not those you fear…

My dreams are far, far simpler than you may think…

Please… be my Dream Catcher and let us, together, make those Dreams a Reality…



Me, uninterrupted There was a girl, a girl that was who grew to be a woman that might have been.  She had dreams aplenty, ambition, plans as all girls do.  She had faults aplenty too – stubbornness, a lack of confidence in spite of what others saw.  A girl, like so many others. I’ll call her Me. She grew… worked hard at times and slacked off others but by and large it might be thought that she fulfilled much of that fabled potential we see in our little ones. Time came for Me to spread her wings, and the haven of university allowed for a gentle departure from home.  Gentle enough I suspect to allay her parents’ fears and gentle enough too to give her the confidence to Become. She met her One and together they forged ahead into a new life – of work, of family, of Life in short. Eldest was born full of promise and hope, as most are. A bright little boy with mischief in his eyes, a wicked sense of humour and startling intelligence. Daughter followed a couple of years later, soon growing out of a disastrous head of hair into a pretty girl whose looks were mirrored in her kindness and perspicacious thought. Not long after, the family was completed by Youngest, another little boy with a smile to melt the hardest of hearts. Life went on, uninterrupted. Me… a teacher, a musician as a girl, was also a Mother. Music and lessons and childhood flowed past in a steady stream of giggles and tears, joys and frustrations. School days brought friends and gatherings. Friends with instruments helped spend evenings playing and days performing. It’s quite possible that Me found more confidence as she grew older, and began to think once more that she might be a musician as well as a teacher.  It’s very probable that she became a teacher again as the children went to school. These children that Might Have Been… Eldest I suspect played the cello, though he probably started with the piano and violin.  Daughter was a violinist who dabbled with the piano and recorder.  Youngest loved the guitar and drums – the rebel of the lot who in his teenage years would star in several bands. And the Me that Might Have Been battled with practising, and tears and rage as those children railed against those necessary routines. And the Me that Might Have Been played with them.  At home, at school, for exams and for play. I don’t know what became of Eldest, Daughter and Youngest.  Because this is not their story.  It is the story of Me. Uninterrupted. And because it is the story that Might Have Been, it is only a tiny part of that story… the tip of an iceberg that will never be seen.   Be, the girl interrupted There was a girl, a girl that was who grew to be a woman that is.  She had dreams aplenty, ambition, plans as all girls do.  She had faults aplenty too – stubbornness, a lack of confidence in spite of what others saw.  A girl, like so many others. But this girl was interrupted, and I’ll call her Be. Her One, her Eldest, Daughter and Youngest came as planned.  The music too wound its thread throughout her life. And then the thread was cut, or tangled, or lost. From one day to the next everything changed.  Life became about illness and difference and disability.  Life became about helping three Little Children that Are make it from dawn to dusk. Eldest still has mischief, a wicked sense of humour and startling intelligence.  He also has autism and depression that hover around him like a dense fog obscuring his vision of the path ahead. Daughter is more beautiful than she could ever have imagined both outside and in.  She is kind and full of wit. She is also autistic and suffers extreme anxiety and sensory processing disorder.  Her world is full of chaos and she must forever spend vast reserves of energy sifting the sense and beauty from the noise. Youngest… oh youngest has that smile! And spark and vivacity and strength!  And Noonan’s syndrome, which brings with it a wealth of charm and adversity from tiny height to a heart that doesn’t work so well, to tubes for eating and challenges to learning. Life was interrupted. Enriched, thwarted; strengthened, twisted; brightened, darkened. Somewhere along the way, music was lost. And this is where Be’s story stops for now, because unlike the story of Me, it lives on.  It is not the story that Might Have Been, it is the story that Is. So unlike the story of Me, the story of Be has the power to change, to evolve, to adapt. Unlike the story of Me, of identity of “I”, the story of Be is a story of doing, of being, of “am”. It may not flow quite so prettily, it may not be quite so happily ever after, but it flows with a fierce sense of reality and strength, and a certainty that propels her on with a smile that reaches depths Me could never have imagined.



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

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

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

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

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

No.

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

I brought out the hammer.

And unwillingly, unhappily, they smashed their plates.

Oh yes, I’m that mean.

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

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

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

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

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

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

20140509_180829 20140509_172103



I don’t especially aspire to “normal”… never have.  I like quirky, I like unique, I like being different and those who are different.

I also take the meaning of the word “normal” as it should be – “usual, typical, expected”.  When talking to others, I often refer to those growth charts mothers will be all too familiar with from baby days – those curves within which our infants sit and progress, and to which we cling, hoping our babies do not “fall off” them, as medical professionals imply that such a fall would be dire.

Baby growth charts

My Little Man sits firmly about an inch lower than the lowest of these curves: clearly, unequivocably, unjudgmentally out of the normal.  It follows, therefore, that his growth is not normal.  My goodness, how people react when I utter those words – as though I had spoken some unimaginably dreadful thing.  But it is simple – the “norm” describes the vast majority of the population – 99% roughly.  If you are outside that margin in whatever is being described, then you are by simple definition not normal. (As a little aside, I’ve rarely seen any particular advantage in being “normal”….)

Similarly, I think I have a fairly balanced perspective on “normal” behaviour in children.  My personal experience was probably on the “good” side, but I had the joy of babysitting some “challenging” children, and in teaching I was familiar with a wide range of adolescent attitudes and behaviours, and privy to their parents’ challenges.

I’m an analyst and I have a tendency to judge my choices, behaviours and thoughts very harshly.  In dealing with my lovely children, I have fairly high expectations of them in terms of manners and behaviour, but their various difficulties and our quirky experience of family life have taught me that allowances sometimes have to be made; that children need to rebel; that times change and expectations sometimes have to change with them….. etc, etc, etc…  I know deep within my core that to expect anything close to perfection is simply unrealistic.

I know!!!

I know that teenagers can be surly and rude.

I know that they can rebel.

I know that many teens spend their lives in their rooms in front of computer screens.

I know that they do not go to sleep till the small wee hours.

I know.

 

But.

You all have to stop telling me these things when I am at my wits’ end trying to get my teenager back to school.  You have to stop telling me that it is normal for a little boy to have a tantrum simply because you ask him to wear a coat.  You have to stop telling me that it is normal for a preteen girl to huff and puff in exasperation when asked to take her clothes upstairs.

Why do you have to stop?  After all, you’re quite right.  Teen boys don’t want to go back to school.  Ten year olds don’t want to wear coats when the sun is out.  Pre teen girls are in their very essence huffy.

Well this is why:

Last week, we began preparing a young man for his return to school three days before needed.  Plans were made that he agreed to, and on the day when he decided against those plans, gentle support was the only way to go.  I cannot emphasise enough how few strategies we have.  Direct confrontation is not an option – it leads to fear, anxiety, anger, aggression and violence.  In fact, the only option we have is time, and gentle persuasion.  And time.  In the event, Darling Man had to take one and a half days off work, a carer was needed to look after the two Littles, and us two adults had to be intensely WITH Eldest until midnight, and then all day the following day to support him in his return.  Since then, there have been many phone calls to and from and with massive support from school staff, he is slowly beginning to settle back into school.  Term has been in full swing for ten days now, and he is still not in class full time.  So next time you tell me it’s normal to struggle to get your teen to school, think again – how often do you experience this?

Little Man, who is constantly, continuously, heart breakingly exhausted, was due to have a friend to lunch.  Said friend lives up our road.  We walked out of the house, and I asked him to wear a jacket.  In spite of the sunshine, it is still chilly and his health is such that a light jacket is simply the appropriate clothing.  This simple request led to screaming, shouting, refusal in the middle of the road for ten minutes, after which I carried him back into the house.  He began to hit me and kick, so Dad stepped in.  More punching, kicking and throwing whatever was to hand… and all the time shouting “let go of me”….. we were not touching him but he seemed unable to process that.  This state of play lasted for nearly an hour, during which we were able to steer him into his room.  Screams eventually turned to sobs, and a good while later he emerged full of remorse, and completely worn out.  So next time you tell me that little boys have tantrums, think again – how many of your ten year olds lose control so utterly over such a trivial matter?  And how many of them are then unable to do anything but sit on the sofa for the remainder of the day?

I’m going to give you the pre teen girl.  The difference with mine I suspect is the emotional intensity of her emotions, but mostly the emotional intensity of the aftermath.  She comes to her senses more easily and quickly than the average teeny girl I think… But topples straight into Guilt, which then needs huge support to work past.

Parenting’s not easy, not for anyone.  And I’ve no doubt that for parents of children who lie in the norm of childhood behaivour, some days can feel everlasting, and life can sometimes feel really hard.

But truly… until you’ve experienced the intensity of reaction and behaviour that our “special”, “out of the norm” children experience and force us parents to experience, you must stop telling me, us, that “all children do that, it’s normal”.

 

 

 



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