Stormy seas


I am that little boat among the storm of my beautiful Children’s emotions…

When the sun comes out, that little boat will bask in its warmth.


Endings, beginnings… moving on or really just standing still?

Tensions are rising once again…  Tomorrow marks the last day of the holidays, and anxieties about returning to school are causing little flowering bursts of panic, micro-explosions, less than silent pops of paranoia…

Much like one of those rather beautiful little games seen on such sites as Facebook, whereby a couple of bubbles  grow and must be popped.  If you fail to pop one before it hits another, more bubbles appear, growing in number at a frightful rate.  Much like this game, we have become a family of bubbles waiting to burst, to pop, to explode into nothingness, or chaos…

And so we try to protect ourselves and each other from those explosions of anxiety, anger, frustration, fraught anticipation.  The only way in which we instinctively seek to do this is to withdraw.  Some of us quite physically – behind screens, in front of meaningless games or distracting laughter inducing comedy.  Others behind a smile, an encouraging hug, an “it’ll be alright, you’ll see”…

Either way, it’s quite false.

There is a fear of pain there… fear of pain inflicted by others onto us, their anger, retribution, nameless emotions… fear also of inflicting our own pain onto those we love…

That bubble we wrap around ourselves for self protection is now itself wrapped by a bubble put in place for the protection of others… because if we explode, we will hurt those we love.

All good, all utterly sensible in the end, except for one thing…

… those bubbles, they do so isolate.

And so the five of us (nope, four… the little one is largely oblivious to the quite insane construct going on around him).  So the four of us find ourselves in terribly separate bubbles.  Three of us almost certainly have constructed these Double Bubbles.  One, wonderful, beautiful, awe-ful boy has a rather more fragile bubble… it does tend to pop with alarming frequency.

It doesn’t help, you know… the building of bubbles.

I’m not yet sure how to manage without them, but I do know they don’t help.  They merely serve to render us alone, trapped inside a fear of the pop.

And thinking about it, would the pop be so terrible?  I know there is a science of bubbles… and that the pop is as much a part of the bubble as anything else.

The pop frightens me terribly, and so I keep constructing my bubbles.  I know that in a few days, when some kind of stability has been re-established, I will be able to merge my bubble once again with that of Darling Man, and that of Sweet Girl.

I know that we will slowly dismantle our temporary outer bubbles and that the isolation will dissipate.

But I recognise a pattern that we continually repeat.  That our endings and beginnings are merely transitions from one state to another, a little like a pendulum.

And despite all the growing I seek and hope to achieve I’m not sure that I’ve really managed to move on at all from all the various traumas of life.  I think I might be standing still.

Whether that is good, bad, or something else entirely I have no idea at all… Thoughts to ponder as once again I find myself running to this page at the end of a school holiday.

Following up!

Funny old thing, this blogging.  (That sentiment does crop up endlessly here, I apologise if it annoys some.)  I’m struck today by the jumpy aspect of blogging.  Life rushes forth, as ever, and it’s true to say that I don’t prioritise blogging above the everyday.  I need, I think, to keep the real and concrete aspects of my life rather higher on my to-do list than this pleasant, warm and fuzzy land.  More’s the pity!

Anyhow, the jumpiness of my blogging became apparent to me this evening when I saw that a lovely follower (go visit her blog over at FEC-this) “liked” a post I wrote a short while ago.  Although it’s not long ago, a lot has happened in my real world, and I’d forgotten about it.  And reading it back, I can’t help feeling I had left the story half untold.

I was writing about my anxiety and anticipation about helping those darling children back to school.  Let me just say that life has really been rather lovely since, if hectic, and as we prepare for the beginning of the next holiday I’m feeling about as calm as I can hope to be.  Back then, my nerves were rather on edge!  I was hopeful that all would be fine on that fateful Tuesday morning.  That I’d be able to help Eldest into the car, zip him back to school and get back just in time for Sweet Girl  and Little Man to come home and then pop out once again in the evening to meet Sweet Girl’s teachers and learn about her progress.

Oh me. Oh my.  NEVER underestimate the power of anxiety teamed with the neurological set up of the autistic mind.  My wonderful little boy, who’s actually a young man in every way just suddenly utterly lost the plot about fifteen minutes before departure time.  All the procedures had been followed – calm preparation, many gentle reminders, and I had given him a departure time one hour earlier than I needed to go.

Fortunately Darling Man had stayed.  Our departure time had been 10am.  We finally left at 3pm.

Darling Man had to take the day off, in part to ensure I was safe, in part to be at home when the Littles returned home.

I have yet to meet Sweet Girl’s teachers.

Eldest made it back to school on the appropriate day, if many hours later than I had planned.

More importantly, when he called home later that night, he was able to articulate his feelings: that actually, regardless of anything else going on, he felt strongly that back to school days should be all about Him.  Not about the Littles, who get to see Mummy every day.  That it was OK to be busy on every other day, but that back to school days needed to be focussed on his needs.  Utterly, completely justifiable.  And his ability to express that so calmly, so kindly, with such an understanding that it sometimes is very difficult to achieve means that we are already planning how to make just that happen in January.

We hope to make a day trip of the event.  For Darling Man to take an official day off (rather than a rescue me day), for me to find alternative care for the Littles, and for us to take Eldest down, take him out to lunch, and re-settle him as much as possible.

Watch this space.  It may work like a dream.  It may simply postpone that moment of transition and trauma, and displace it.

No matter.  He found the words to tell us how difficult this had been for him, that he had not meant any of the aggression that his body displayed, and that he was simply scared.

So there we go… without going into the gory details of an autistic meltdown and the devastation that ensues, especially for the young man in question, that is the end of the Back to School story.

Given that love is unconditional when these kids are concerned, I cannot help but come back to this startling and endearing thought:  my overriding emotion where this boy is concerned is pride.  Overflowing, overwhelming, immense pride in all that he is achieving.  I hope one day he believes me when I tell him:

Eldest… I am PROUD of you!!

Back to school

I have nothing to compare to, so I don’t know whether every family experiences this level of trauma, anxiety and stress upon returning to school.

Little Man just left after a week off for half term.  The week has gone fairly well, but he’s constantly exhausted and has been in a fair bit of pain.  This means that activities are limited and he’s spent a lot of time watching telly (cue some good Mum-guilt for not finding more creative, useful pursuits).  He’s also lacking in friends… although he’s made some good friends at school, we have yet to bring them out into his extra-curricular life; and his brother and sister are masters at making him feel excluded.  All in all, the holidays are not the best time for him.

But before this school year, school had become so sad and traumatic that he still dreads the start of term.  Unsurprisingly, while his thinking brain may welcome going back to his new school, his feeling brain has not yet accepted that school is now good.  So leaving this morning, when both siblings only start again tomorrow was tough.  The taxi’s remarkable lateness didn’t really help.

I’m happy he’s now gone because it has been really challenging keeping him happy this week… but my heart is twisting a little because he is obviously very, very tired, feeling floppy and in more pain than usual.  And I made him go to school.

Sweet Girl… golly that kid makes my heart explode!  She is so much like me, in all the good and all the bad, and I often find myself tremendously frustrated with her.  She comes to me with all her happies and all her sads, and I am immensely privileged to be her confidante… at the same time that role comes with a huge weight of responsibility.  Despite a very typical teenage melting pot of hormones and mood swings, she brings super human effort to the management of her moods.  Once again, I cannot feel anything other than tremendously proud of her, but it can be a little galling to have to come out of my frustration because she has managed to come out of hers!!  She may be super human.  I, on the other hand?  Really, really just human 🙂

Sweet Girl is about to embark on a whole new adventure… To some, those three little words would spell excitement and anticipation.  For Sweet Girl, thanks to her wonderful new school, it does… but added to excitement and anticipation are anxiety and trepidation.  And come Wednesday morning that will no doubt escalate to blinding panic, but we will deal with that.  Starting this week, my sweet little girl will be staying at school from Wednesday morning to Friday afternoon – oh yes!  She will be boarding!

While this change will bring with it some difficulties, Sweet Girl has never liked the holidays.  She thrives on the structure of school life, and finds it very difficult to occupy herself at home.  In fact, she begged me to register her for the Young Writers’ Program on NaNoWriMo this year.  I’ve given her a very achievable word count of 6000 to write by the end of the month.  I’m hoping to be able to share her story with you all when she has finished (if she gives me permission, of course!).  The conclusion is that I have no worries about her going back to school… and that gives me more relief than many of you might know.

And then we have Eldest…

My chest is tight, my head is whirling and the anxiety is mounting as we head towards tomorrow, when I must take him back to school.  Do not get me wrong.  The school is working incredibly well for him; he is cared for amazingly well, is learning and progressing; and I trust them absolutely.  In his head, however, it is “a hell hole”.  No matter how much I remind him that his phone calls to me in the last few weeks have been happy and full of good news, he simply cannot access those emotional memories.  He cannot move past the fact that his friendships are not a “good” thing about school because he can keep in touch with them via Skype.  He cannot accept the fact that the school had nothing to do with the departure of one of his best friends.  He cannot comprehend that if he were to stay home during term time, he would not have the leisure time that he enjoys during holidays.

Talking to him is of absolutely no help.  He is stuck in a very autistic logic… one that thanks to his intelligence is difficult to refute, simply because its only fault is its premise.  And he refuses to accept that his premise is faulty.

Being silent is equally problematic.  If I do not speak to him, I do not care, it seems.

Empathy is a very painful companion.  I feel what he feels.  And it hurts!  He is absolutely in real pain, and the desperation creeping up on him is tangible.

shhhhhhh…. and I want him to go back to school as soon as possible…….

There is a part to blogging that rips something inside me.  The demands that my own words make on me to write the truth.  However horrible that may be sometimes.  I can justify it, I really can.  After all, if I admit to these awful feelings that I would rather a team of caring people (near strangers in some way) look after my son because it’s hard work doing it myself, then maybe another parent will read my words and realise that they are not alone.  And I know (I think anyway) that I am not alone.  But at the same time, the nakedness that follows is quite frightening.

How do I make certain that everyone… my readers, my family, my beautiful, darling boy… knows how much I love him?  That in spite of the relief of not having to battle to get him into the shower, my true feelings about sending him to school are pride at his progress and thanks to the staff that are helping him achieve it?

How do I admit, once again, that I and Darling Man are insufficient?  On our own, here at home, we cannot help him become the young man that he can be.

I wrote up above that I am really, really human.  Two weeks of Eldest at home, and a part of me cannot wait for him to go back to school.  We have had largely a lovely two weeks.  But it’s also a game of treading on eggshells, pretending to have control that I absolutely do not have.  Weaving a careful dance with Darling Man around him to ensure that our minimal requirements of him are met in order that we not have to put in place consequences that would absolutely come with massive meltdowns.  And knowing that our ability to manage a true meltdown is possibly nil.  We dare not test those waters.

Eldest is making amazing progress.  I have to share here a youtube video that he made this week.  His understanding of physics and electronics of sorts staggers me.  While he spends far too much time on his computer, I do recognise that he is not wasting his time.  I know that many people consider Minecraft to be a kids’ game.  Look at his video though.  This is a 13 year old boy who has taught himself at the School of YouTube to build circuits that allow his character to move up and down an elevator (I think it’s a transporter, but you be the judge).  The limitations of my account here do not allow me to embed the video… but click on the link, it’s worth it.

Click on the image (which is just a standard Minecraft image) to open Eldest’s video

Come Wednesday, I will be calmer once more.  In the meantime, we have to navigate the next 30 hours or so.  They will be filled with anxiety and anger.  While he can manage to contain his anger and avoid physical aggression now (phew!), he has no concept of shielding others from it.  And that’s where empathy and sympathy are nightmare companions.  Not only do I feel what he is feeling, without the slightest ability to help him, but I bear the brunt of all that anger.  And I hate it!!!  It simply does not feel good!

So do share with me… “special” families, and more “normal” ones…. how does your back-to-school happen?  Is it a non-event, or does it begin days before the actual event?  Do you look forward to the children returning to school and if so does that come accompanied with guilt?  Do you hate sending them back because you enjoy their company?  How did your half term go?

You have so much more power than you realise…

To those of you who broke me this last school year – knowingly or not, willingly or not…

I don’t know why you felt so threatened by me.

I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.

I don’t really know what led you to choose to ignore me so utterly.

I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.

But all those things you must surely have felt, for there is no other reason for your actions.  And the year is over now, and I and my Little Man will not be returning.

But know this: you broke me.  I will mend and I will heal, but you broke me.

All summer long, your voices have been dictating how I care for this little boy.  Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair.  Those voices who maintained that he ate exactly like other children.  Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day.  The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night.  The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors.  Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.

All of you… I know that you had good intentions.  I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that).  And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything.  [You forgot that Little Man has many, many professionals, and that the only person they have in common is me.  You forgot that they see him once in a blue moon, and that I care for him daily.  You should not have forgotten that.]

And so, you broke me.  Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs.  You see, you told me in those voices, in those actions, that I was wrong and you were right.  And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.

I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.

So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down.  And the really insane thing is that I have been listening to you.  We have been using his wheelchair about 25% as much as my gut tells me to.  I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front).  I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…).  I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.

And now, half way through the summer, Little Man is yellow, bordering on grey.  He is in pain most of the time.  Leg pain mostly, some arm pain and tummy ache and regular headaches.  He is TIRED… so, so tired.  His eyes are huge, and dark.  His memory is hugely affected, and he is struggling to process all that is happening.  That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.

And you won’t see that.  Because you are tucked away enjoying your summer holiday.  Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway).  Sad to say, I don’t think you’d even see it if you were standing here right now.

You can’t change what happened this last year.  You will not have an opportunity to do things differently with Little Man, or with me.  I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.

But I will heal and mend, and as I do so will my care of Little Man.  I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time.  And we make a new start with new staff for whom a little boy such as him is wonderfully normal.

So you, in all of this?  If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?

I would ask that you remember we parents of special children are always on your side.  We want to help you because if you can meet our children’s needs, they will be happy and they will thrive.  I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).

Listen to me.  Listen to the mother or father who comes to you for help, or to give you information about their child.  There is a reason for their need to communicate.  And armed with information you can be better… better teachers, better assistants, better adults.

I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately.  In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs.  If you ignore the parent, the child WILL suffer.

I would ask you to put to one side for a moment your ideas of failure and success.  I would ask you to remember that you can only do as much as you can do within your environment.  And that environment, and your help simply may not be enough.

I would ask you to remember that sometimes, giving up is necessary for a child to succeed.  Sometimes, success is having the courage to say – this child needs something different.

I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me.  Mine is but one rather little voice, shouting, crying, singing for my children.  There are many who would shout me down because what I sing is inconvenient.

You can choose – to listen to my song, and join with me to support it.  Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.

You have so much more power than you realise.  You need to know that you broke me.  You need to know that I will mend.  You need to listen, to care and to be so, so watchful of what you say and how you say it.  Mothers like me do not need to be broken.  We may appear strong, but really we are very, very fragile… a little like eggshells.

You have so much more power than you realise.  Use it wisely, and carefully.  Please.

Memories are made like this…

Dear Symcox Family
It has taken me a while to get over the surprise of the book you have written about the time on the Canal Boat.
I was totally taken back at the wonderful words, pictures and emotions that have been captured in your write up. In 27 years of working with groups in the outdoors I have never had such a amazing reflection on a journey that captures the event so well.
With your permission I would to forward a copy of the book to Short Breaks as I am sure that this will ensure that families will continue to be supported and offer quality breaks as you experienced and will help to widen the choices as there are lots of other activities we can offer.
Your write up has inspired me and SOLD to get on and design more breaks/experiences  because of the positive outcomes.
For me, it has helped remind me why I do Outdoor Learning and continue to focus my efforts into ensuring quality Outdoor activities are offered by me and my staff.
Thank you for a wonderful weekend.
Rob Fidgett
Operations Manager
Surrey Outdoor Learning and Development
For those of you who might like to look at the photobook I made to remember our wonderful April weekend, here is the link.


Celebrations on my birthday…

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

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

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

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

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

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

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

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

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

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

I celebrate.

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

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

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

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

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

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

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

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

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