untangling this thing we call life…

Monthly Archives: August 2012

There is a rather lovely word in French (though I very much doubt it’s in common usage): to crapahoot.

To be fair, that’s not quite right.  I have since adopted the word and turned it into English, giving it an additional and entirely incidental alternative life as something to do with bodily functions and owls.  Let’s start again:

crapahuter (v.):  marcher ou progresser en terrain difficile.

To translate into English, read on!

to crapahoot (verb): to walk or make progress in difficult terrain.

Dictionaries translate this glorious word (which has its origins in the military) into “trudge”.  How deeply sad and browbeaten…

Life in my shoes (oh, I just read a rather lovely blog post about trying on others’ shoes… click here for the delightful Dadicus Grinch ).  So sorry for the interruption, my brain is fizzing today.

Life in my shoes, I was saying, has much of the “difficult terrain” about it.  As someone who is fairly straightforward, a little eccentric but pretty neurotypical, living with three Aspies can be a handful.  Add in a non-Aspie little boy who (a) gets on the others’ nerves and (b) has considerable special needs of his own, and the normal juggling act that is motherhood turns into a full blown circus act with flaming, petrol powered chainsaws!

Now back to my words: I am making progress in difficult terrain, I think that much has been fairly clearly established.  Do I feel that I am trudging?  Well sometimes yes.  There are dark days when each tiny action feels like moving the earth and results sometimes in regression instead of progression.  There are days filled with panic at the amount of insurmountable obstacles that lie ahead.  So sometimes, my progress can indeed best be described as trudging.

But overall, I am really quite happy with my lot.  No-one can suggest that my life is boring or dull, I am rarely at a loss for something meaningful or important to do, and on the whole while looking at the big picture I am making forward progress.  This summer has so far been the best summer holiday since our family became complete.  It has NOT been wonderful!!  It has been hard work, and I have trudged through quite a few days and hours, BUT.  When I look at the past decade or so, it has been the BEST one!  Kid number one is in the right train carriage of life for now, at the most wonderful school I could have hoped for.  On the right track, with the right steam engine, driver and guard to support him through that growing up thing he’s trying to do.  A few years ago, I would have thought that impossible.  So you see?  Forward progress.  And if I had to trudge through all that time, all those years, I would be deeply unhappy, bitter and I’m sure my nose would now be green and hooked.

So no, on the whole I refuse to trudge.  I will, however, delight in crapahooting! through this terrain I call life!  For a start, how can you ever think of such an act in anything than bright happy colours?  Yesterday was a bit of a trudge but today was undoubtedly, wonderfully a joyful crapahoot!

Our outing this afternoon had been planned a week ago… nay a few months ago.  It all began with my Christmas present to darling man.  I gave him a diary in which were stapled twelve small envelopes, one on the 25th of each month, to be opened only on that date.  In each envelope was a challenge, a treat, a strong suggestion for the month ahead.  The reasoning behind this gift was not only to prolong Christmas a little, while saving myself the burden of making or buying a gift that was unlikely to be needed or especially wanted, but also to help our family along the road with some couple time, family time and fun (fun does not come easily to us, we need to learn!!).  So… in amongst the date-night challenges (come to think of it, the Valentine’s day one still hasn’t happened) and the couple time treats were family outings: going bowling, taking the kids out for a family bike ride (a wonderful time at Alice Holt Forest) etc.  For the summer holidays, the challenges were very much family oriented: organise a craft activity for us all to join in and a day out involving water.

So!!!  A day out involving water.  With the teensiest bit of nudging, darling man settled on a trip to the seaside.  This is only about an hour’s drive away and so really should be a straightforward day out.  

No, stop laughing.  It should be straightforward!!! Obviously it isn’t, but it should be!!

Obstacles to overcome:

  1. Wrench Aspie boy away from his laptop and Minecraft.
  2. Convince Aspie girl that yes, there will be toilets, no it’s not far away (remind her of a known trip of that distance to compare) and yes she can take her teddy.
  3. Plan to take wheelchair so that Noonie boy will have some energy for the beach.  Don’t take power chair as it won’t get on the beach.
  4. Remember to take normal kid snacks, plus feed and tubes for Noonie.
  5. Take plenty of towels and spare clothes (fairly standard!!)
  6. Check weather, for Aspie dad’s sake
  7. Check tides, ditto
  8. Check route and parking options, ditto
  9. Remember blue badge for parking.
  10. Get half way there and realise you’ve forgotten blue badge… oh well!!

Remarkably small list actually.  What’s not on the list is that gentle balancing act of these wonderful if challenging personalities, plus my anxiety that they might each explode at any moment!  This is the joy of crapahooting!  on the go.  Making progress through difficult terrain.

And amazingly, it went remarkably smoothly.  The weather and tides were on our side, a car parking space was found near the beach, rendering the use of the blue badge far less necessary.  Coffee was found for Aspie dad, and sea and sand were found for Aspie girl.  Noonie boy ran round and round once on the beach and is now crashed in bed looking pretty ill (but hey, the fun!!!).  Aspie boy took his time but eventually left his shoes and socks and splashed around with a smile on his face!

The return journey was as uneventful as we can ever hope for and only small beginnings of explosions could be heard until bedtime.  A special dinner of fish and chips was met by all with cries of glee.

Because even in difficult terrain, you can make progress, and you can do it with a smile and while having fun.  So no trudging in the future please…

Let’s crapahoot!



There’s a little girl inside me screaming “I told you so, I told you so!!”.

6 was the perfect age.

And ever since then there has been the teeniest tiniest part of my self, my “me” which has stubbornly refused to grow up past 6.  Of course, the rest of me was all grown up from the time I was 2, so it’s not as though I’ve ever been the most balanced individual!  For the last twenty years or so, I’ve done my best to grown down in fact, and learn to be little as it seems to be an important step in life that I simply skipped.

6 then…

At 6 I lived quite calmly and happily with Maman, Papa, little sister Olivia (don’t get me started, I’m all full of eldest child issues – let’s just say that most of them are resolved and the thousand or so kilometres that separate us do a splendid job of keeping the peace.  In this way we love each other and have found a sisterly bond which is rather pleasant!), and baby Matthieu (not an issue, as a new born he was simply interesting and sweet).

I was the “big girl”, the “good girl” and could be trusted with (in my mind) pretty much anything.

School was just across the road, the bakery round the corner so that I could go and buy the croissants on Sunday mornings.  My best friend lived in the flat just above ours and my other best friend was two minutes around the corner.

The forest with playground was close, I remember a market and a general humdrumness to life that was safe and peaceful.

It’s true to say that I HATED the music lessons I attended that year at the local conservatoire.  They were held in a basement room and I remember the bare lightbulb hanging from the ceiling with dread.  Touching a musical instrument was out of the question (gracious me!!!  not until you can read music and do your solfege) and it felt like torture!  Playing the piano upstairs was FAR more satisfying!

Baby brother was born and other than the annoying visit from my grandparents come to help (and just getting in the way from what 6 year old me could see) was a rather delightful addition to the household.

School was good if a little dull, and I had lovely friends.

Pretty much a perfect idyll.

We moved to England then (and actually that was the best thing that could have happened for me) and that move crystallized “6” as a perfect year.  Up to and including its (then) traumatic and dreadful end.  How could my parents take me away from my friends?  Take me to a land where people spoke gobbledygook?  Not ask my opinion?????  By comparison, everything in my life was completely, utterly perfect.  And thus it stayed!

Today I had to be a grown up.

Really, seriously grown up.

Which I hate.

I had to phone an official body and make a serious complaint without offence in order to put right a decision that could make my little boy’s life a misery now, and disadvantage him far far into the future.

I have to save him.  That’s major grown up stuff right there.

In these moments there’s a little girl inside me screaming “I told you so!!!  Growing up is bad!  Stay 6!”.  She’s screaming and crying and imbued with an overwhelming sense of justice denied because all of this is simply WRONG!

Which is all very well, but really doesn’t help with the whole “being a grown up” thing.

I’ve learnt not to babble, to listen.  To type a letter out first and use it to guide my conversation.

I’ve learnt through bitter experience not to trust.  To record EVERYTHING!  This goes against my nature which is trusting to the point of naivety.  I find it astoundingly easy to see someone else’s point of view.  That by definition humanises them and makes their actions understandable.  Trust follows incredibly easily.  Unfortunately trust has backfired on me a lot!!

So I picked up my phone today, and donned my grown up voice and made my notes and made my point.

All the while that little girl inside was making my whole body shake and it took more energy than I can describe to keep my voice steady.


Now we wait.

Having done the grown up thing I can stop being so grown up for a while, and the little girl inside stops fighting quite so hard.

But still… 6…

What is/was YOUR perfect age???  And comment please, cos I do want to know!!!  It seems unimaginable to choose an adult age, but then that’s “6” speaking again (the idea 6 you understand, comes with the freedom of adulthood too 😉 ).

I’m writing this tonight, sat rather comfortably in my bed, relishing the sounds of silence.  Darling man who has heroically shifted his working day early in order to be Dad for this last week of the holiday is now fast asleep beside me.  Growing lad Zack is no doubt still awake but drifting off to sleep and absolutely quiet.  Princess Kesia, courtesy of rather more medication than I would like, is deep in peaceful slumber.  Little man Tom is in the land of Nod, all plugged in for the night and life is still. In the background, the very comforting sounds of the Gilmore Girls… It is a fact that my loved ones seem unable to fall asleep in the silence of their own minds and thoughts…  We found fairly early on that Zack found night time much easier if he had a CD on.  Not only this, but music is ineffective while a story, or audio book is a wonderful relaxant and sedative.  When Kesia began to have trouble sleeping, I tried various strategies such as the sleepy book , reading her stories, warm milk etc etc etc…  Eventually, I tried the same as Zack… CD preferably with talking rather than music.  Tom has very different sleeping difficulties largely linked to his chronic pain problems.  Not only does he sometimes struggle to fall asleep, but he often wakes in the night due to pain in his legs, arms or tummy.  At the age of 9 we are trying to teach him some self management techniques, and a CD was one suggestion from the occupational therapist.  One particularly effective CD is the one from Relax Kids.  He especially likes the stories for boys. And my wonderful, kooky, kind, quiet, mysterious, darling man… Since I have known him, he has been unable to fall asleep without some sound… specifically television sound.  Now, this goes against EVERYTHING I was brought to think of as “right”.  It simply can’t be good for you to sleep with noise and or lights on around you.  And in many ways that makes perfect sense.  I remember reading a few years ago that proper sleep was disturbed by light.  Again, sense… And now?  Now, I am in a more pragmatic place.  Some sleep, even if it isn’t as deep or restorative as it could be, is simply better than no sleep…  And my goodness golly, aren’t we lucky to live in a time and a place that allows CD players and night lights and televisions.  Are we spoiled?  Obviously yes!!  Should we deprive ourselves because others are not as fortunate?  Well that’s more nonsense than falling asleep with light and sound on.  So in a spirit of acceptance, I accept that our house is not as quiet as some around bedtime – at least it’s peaceful! For years (and years and years) our bedtime sound was that of Friends.  So much so that the first season’s CDs are worn out, thus bearing out the theory that CDs do not last for ever! So much so that we know the entire series almost word for word! And it has become something of a lullaby…  Only recently was it overtaken by something other.  The something others have not had quite the same hold, the rather comforting mix of giggles, long storyline, and just gentle nothingness. Although for me, The Gilmore Girls is simply perfect!! However, as I sit writing this inordinately long blog post, Friends is on my mind.  Because the writing challenge I came across tonight was about sound.  And the sound that immediately sprang to mind links in to one particular episode.  It’s not a significant sound, and I suspect most people watching the episode would hardly notice it at all.  Me? Every. Single. Time. I watch or hear this episode, I leap out of bed and into Tom’s bedroom – no matter the time.  And I KNOW that it is the same episode that provokes this reaction!  But that sound is so visceral, so ingrained in my brain that my body acts before my mind can take over.  It is a sound that I listen for even while deeply asleep.  And a sound that I cannot imagine ever forgetting. Meet the Infinity Enteral Feeding Pump, courtesy of Nutricia Homeward:  (If this works and I’ve understood how to do it, clicking on the picture should send you to a you tube video showing you how to program the pump, and allow you to hear that singularly piercing sound, that I will henceforth refer to as “the beep”.  Here’s hoping!)

Little man Tom has been tube fed since he was 8 months old, and has been reliant on a pump feed overnight since then.  He’s now 9 years old, so that 8 years and 4 months of “the beep” ruling my nights.  Because this thing is full of alarm settings:  OCC IN, OCC OUT, BATT, END DOSE, AIR etc etc.  The favourite seem to be OCC IN and OCC OUT (occlusion into the pump or out from it… the theory is that depending on the alarm you will be able to find an obstruction or a kink in the tube in a different section of the whole system…  if only it was that simple!!).

The pump has a variety of different tones, but “the beep” refers to OCC IN and OCC OUT.

If little man Tom moves in his sleep and kinks his tube?  OCC OUT (someone really clever would somehow find an audio file of “the beep” and link it to those words… I’m neither that clever nor that patient – for which you should profusely thank me, as it offers you the true joy of one less painful aural experience).

If his feed is a little too thick and the pump gets confused?  OCC IN (or if a tiny lump gets stuck between the bottle of feed and the pump).

If the tube twists?  OCC IN or OCC OUT

If the feed is the wrong colour for the sensor?  OCC IN

If the feed runs out or blocks in the bottle stopper?  AIR IN

If by some miracle all has gone well and the whole amount of feed has been pumped into little man?  END OF DOSE (a slightly different beep)

If little man has so twisted and turned in his sleep that he has become unplugged and the pump is kindly feeding the bed or the floor?  SILENCE… NO. BEEP!

Now.  I’ve been doing this, it’s been established, for some 8 years now.  That’s not far off a decade!!  So on the whole, we are past the teething problems.  We hit a tough patch when Tom was about three years old because I moved from formula to a blenderized diet of “real” food… so lumps, consistency, viscosity, colour became a whole new world of “pump whispering” but again, it’s been a while! Despite this, the pump usually finds something to beep about at least every other night.  Some nights the bloomin’ thing just never stops!!  And 8 years of broken nights do mean that I tend to give up and turn the blasted thing off… compensating for the lack of calories can be an uphill struggle for the next few days. So… It’s taken me this long to reach the starting point of this post!  The writing challenge on WordPress this week was to write about a sound.  “The beep” is my sound.

That sound permeates my entire being.  I am so attuned to it that I often wake milliseconds BEFORE it beeps.  It is a sound that I live and breathe, one that I both love and depend on and also one that I resent with remarkable passion.

I have utterly ambiguous feelings towards this little beep.  It symbolizes life, the conquest of modern science and medicine over mysterious, complicated and long term illness.  Without that beep, I have no doubt that my little man Tom would quite possibly not be alive.  And so, it is a sound that I treasure and that I would feel quite bereft without.

And yet it is also a sound that I hate with more energy than I can express.  Every time I hear the beep, I hear another reminder that my little boy is a little bit broken.  That despite everything I could have done as his mother, I could not teach him to eat.  And before the choirs start with the usual chorus of “but you didn’t do anything wrong”, I’m well aware of that.  My genes, my maternal instinct and my creative spirit all sing differently.  Fortunately, my mind, my thoughts, my ability to see the world through different eyes keep me on a much more even keel.  Whatever the logic, the “right” thinking, the beep reawakens the deep (yet quiet) grief that my son must live a life that few would choose.

On a far more practical and selfish level, I HATE being woken up several times a night by a strident electronic beep which means anything from a few seconds out of bed, to half an hour or more.  Unblocking tubes, changing to new tubes if necessary – the yuck factor of having to clean a bed, floor, mattress (not to mention little boy half asleep and cold covered in feed) all in the dead of night on nearly a decade of broken nights.  As a little aside, for those of you new to me and my funny little ways, Tom’s feed is essentially blended dinner – milk, fruit juice, oil, protein of some kind, vegetables… a delightful concoction which fills me with glee when I see it go into his little tummy because it keeps him healthy.  But really quite disgusting when stuck to sheets, dripping on the floor over any toys that have been left out, or worse still papers and books.  Icky, ick!

Back to Friends, and the small matter of “Coma Guy”.  Much as I enjoy this episode – it makes me giggle and smile – I cannot train my body to realise that the beeps in the background of the hospital scene are not MY beep!!! By the time my brain has informed my nervous system, I’m already in Tom’s room, checking the pump!!

Sounds are mysterious things.  They fill our lives from morning to night, and even through our sleep.  One sound links to another and some sounds trigger deep emotional and physical reactions.

My sound is a little, life saving electronic beep.  One that I love, one that I hate.

What is your sound?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One of the true joys of living a simply tangled life is that the small achievements and successes that pass many people by as ordinary are glowing with wonderment and shine on for days, weeks and months after the event.

A little example:  On the 15th December 2001, my wonderful little girl was born.  It was lovely, but not the highlight of my day (shock horror, I am a self confessed mother who does not class the birth of my children as “top 3” moments…). No.  The highlight came a few hours later.  Ensconsed comfortably at home on my sofa with my new born baby dozing in her car seat, my little boy Zack came in to the room freshly woken from his nap.  He was ten days short of his second birthday.

He stopped upon seeing his new baby sister, looked at her with a substantial degree of caution, then came to me and sat on my lap.  He then gave me a hug.

That’s all.

That’s it.

My highlight of the 15th December 2001.

It was the first time that Zack had, of his own accord, come to me and given me a hug.  It lasted a marvellous age of two minutes and I will never forget it.

True, true joy.

On Wednesday this week I experienced a wonderful day during which many little things could have become wrapped up in a tangle of annoyance and frustration, yet none did.  It was a magical, simple day.

The plan for the day was fairly simple: a feeding therapy appointment at GOSH.

First hurdle was to achieve a relative stage of calm and a plan for Kesia.  She becomes overwhelmed by the smells, noises and people in London, and finds the train journey very worrying due to those same reasons.  Luckily, we had just received her new ear defenders and focussed on dulling at least one of her senses!  Armed with some protection and a good deal of courage, the first hurdle was beautifully overcome by my warrior princess.

Little (well, huge) tangle appeared at 10am, about half an hour before I had planned to leave.  I realised that I had completely forgotten to phone the railway company to request a ramp for Tom to access the train in his power chair.  Now admittedly, I could have taken his manual chair which I can easily lift into the train, but Tom is a far more pleasant travel companion when in his power chair.  He is more independent, calmer, more in control and generally far nicer and happier!

With no real expectations, I called the special assistance phone line for our local operator, Southern.  I am very fortunate in that I have little but praise for their service thus far.  I know others have had terrible problems getting help  from their rail operators, as a fellow mum describes in her blog Just Bring the Chocolate.  But the reality is that the rail operators only “guarantee” assistance if it is booked at least 24 hours in advance.  Which is all fine and good, but does limit your ability to travel on a whim.

On a whim, or when Mum’s organisational skills have abandoned her completely!

So brazenly, I phoned lovely rail assistance, asking for a ramp to be provided half an hour from now.

Imagine my wonder, my joy and my gratitude when the lovely gentleman on the other end of the phone assured me that he would place the call immediately to the station and I could get my boy in his machine and power on out of the house!  I must try to find out his name – that simple courtesy escaped me at the time (and once more later in the day… oh the manners they do need mending!).

So at half past ten, we already have some tangles simply and beautifully untangled and I am enjoying my metaphorical balls of beautiful yarn wound neatly and happily.

The train itself was miraculously empty, we were not only able to get on the train but actually caught an earlier one, allowing me to relax and even read my book!  More joy!

I’m giggling as I remember the little hitch in my otherwise rather perfect day:  upon arrival at Waterloo station we headed to McDonalds.  It is a usual haunt as the fries are one of the few foods that Tom eats well and willingly.  I usually ask for a happy meal with two portions of fries and no burger – no waste and he gets a toy same as his sister.  I have to say that I was not impressed when the lad serving me told me that he had just been reprimanded by the manager for substituting fries for a burger.  “We don’t do that”.  In my experience in the UK and France, although I sometimes get some strange looks, I have never been told that this is not possible.  What does make me smile (instead of raise hellfire and complain formally) is that the manager failed to realise that he was making a bigger profit on my transaction than on any other happy meal.  Unless I’m much mistaken, a portion of fries costs less than a burger, and I paid the normal price of a happy meal.  Silly man.

Scolding and double fries in hand, we moved on to the bus stop.  Another silly man (bus driver this time) Imagedecided that it was too much hassle to put down the ramp and simply drove away from me – having made eye contact with me…  But I was still floating on the high of my beautiful untangled day, and enjoyed the fact that there are at least 4 buses every five minutes available to me, and that my earlier train meant that we had gallons of time to spare.  A little bus ride and a short walk later, we were comfortably and happily sat in Coram’s Fields enjoying our lunch!

A little aside… I discovered Coram’s Fields a few years ago when Tom was in GOSH and rather poorly.  I believe it was a nurse who told me of this lovely playground minutes away from the hospital.  The lovely thing about this playground is that adults are not allowed in without a child.  The resulting atmosphere is an oasis of calm and security in the middle of a very busy city.  We had a giggle, some play and enjoyed lunch in the sunshine… a true highlight moment.

Joy sometimes has a funny face!

Both Kesia and Tom coped admirably well during our appointment – playing nicely in the playroom while I had my part of the chat with Mr E (see this post).  The rather splendid Mr E then authoritatively told me to stay put in a nice quiet room while he went to work with Tom.  Words rather fail to express how proud I was of Kesia for managing to stay in the playroom and not coming looking for me – those fifteen minutes did me a power of good!

Our return trip was equally uneventful!  Oh me, oh my!  A brief stop at Cafe Nero for a soy latte for me and baby chinos for the children, which Tom finished.  Another little moment of true joy, because he also ate half an ice cream.  I am so proud of him, because he worked really hard with Mr E, and gave the impression that he had understood he needed to “eat a little bit more by my mouth”.  But for words to be put into action so soon after the appointment was a massive milestone for me.

I have a wonderful finish to my simple, untangled day.  We arrived at Waterloo and got ready to get on the train.  I usually manage to find a station guard’s attention to get a ramp, though they can be a little sulky if they were not expecting me.  This time, there was no-one in sight.  I was not really worried: I’m quite happy to stop the train leaving on time if need be 🙂 .

To my astonishment and utter delight, a guard coming off duty took the time to ask me how he could help, put his bag down to unlock a ramp and made sure we were safely on board the train before moving on with his day.  Lovely, lovely man, who more than made up for the two silly ones earlier in the day.  His colleague, the guard on our train was equally kind and caring.  Tom was delighted when the guard made an announcement just for him – just announcing our station because he did explain that he is not allowed to tell jokes over the intercom, but Tom was thrilled.

Sometimes, the little things go right.

And when they do,life just buzzes with joy.

Long term is the right word.
After a break of nearly a month, we are back at Great Ormond Street to visit the lovely Mr E for Tom’s feeding clinic.  We started this process in March, and I think it’s fair to say that the progress so far has been firmly lodged in the “getting to know us” category.  Tom gave a good impression of a little boy who wanted to be rid of the tube for a while before finally being honest and becoming quite angry with Mr E, saying that he did not want the tube to go away.  So Mr E has a rather tricky job on his hands, and I for one am hugely relieved not to be on my own handling what is a significant difficulty in our lives with Tom.

Trouble is that each visit tends to start with, “how have things been?”.

Because we are a family and not merely a set of distinct problem and issues that need resolving, Kesia’s difficulties impact on Tom and vice versa.  The uncertainty of the summer have had a huge impact on me despite my best efforts to stay calm and happy – that then creates tensions which the children feel without understanding.  Zack has been home, changing the family dynamics once again.  All of these things need to be at least touched upon when answering “how have things been?”.

And Mr E, so lovely, often looks as though I have taken his head, put it in a blender on the highest setting and replaced it on his shoulders.  How do you unravel such a tangle to find a way forward for little man Tom in the specific area of food?  On the surface, this feels like simply another hospital department to help deal with one of Tom’s medical problems.  Dig a little deeper, and it’s food…

Food.  Such a simple word, such a simple, basic, necessary part of life.  And yet, Tom was born without that impetus to eat.  He never had a rooting reflex, and only drank milk at first because I had the experience of breastfeeding two other children who were still very young.  Once “positioned” properly, the sucking and swallowing were fairly normal.  But he hated it.  And as the weeks went on, he hated it more and more, and never showed the slightest interest in being fed.

The whys and wherefores are a mystery.  There are many possible reasons for this, from the neurological and developmental (the lack of rooting reflex may suggest that he simply hadn’t developed the ability to eat yet) to the physical (he probably had reflux which causes pain, and slow motility which gives tummy ache).  I dispute behavioural reasons at the time, he was simply far too young, although at the age of 9 years there is now a huge behavioural element to his difficulties.  The fact was and is, however, that food, eating and feeling full are not things that come to Tom the way they do to most of us.

Just to tangle things a little more, we cannot ignore the fact that Kesia finds food challenging.  In completely different ways.  She enjoys good cooking and experimental flavours and can become quite obsessive about cookery books.  She loves cooking and baking, though would much rather someone else did the eating.  Clearly, however, food is a source of stress, and when outside stress becomes too much, she simply stops eating.

Two very different problems.  Two very emotional problems.  As a little aside, I might add that for a long time now, I have felt deeply that my primary role as mother is to nourish my children.  Emotionally, socially, physically.  It is an ongoing battle with my inner self to keep the dark voice of “failure!” at bay.  When Tom was very little, a therapist told me that my job was to provide food, Tom’s job was to eat it.  An astute comment, and one that frequently keeps me sane.  Years later it is still a mantra I use to remind myself that I am not a failure…

So.  Having had the “how have things been?” chat, and weighed and measured Tom ( he’s lost a little more weight but still within acceptable limits), Mr E has gone to work with him on some project which aims to motivate him and hopefully give him something a little more concrete to work with.  I think that this may be the beginning of the work… the more concrete the better I think!!! I would almost love to be given a menu for the next fortnight – give him this amount of this on this day!… but as we are learning every visit, tube weaning is far closer to art than science.  Mr E has authoritatively told me to stay in the office (don’t look at any confidential files lol!) to have a bit of alone time.  Kesia is in the playroom with a lovely lady and Tom should be working.  The time and space are good, but a little worrying – they allow baggage and tangles to come to the fore in my mind.

Luckily as I was typing that last sentence, Tom came to tell me I was needed!  Sweet boy worked really hard with Mr E to draw up a “Journey to tube weaning”.  The first goal is to reduce his feed by 120mls.. slowly!  Mostly we are working on his motivation, so no rigid concrete plans (poor me!!, but I do understand that it would set him up for failure) but we are simply looking for Tom to try and eat more “by his mouth” in the next few months.  A little weight gain would be rather nice too!

There’s a lot crammed in my head at the moment, and I crave the time and energy to release it here.  I plan to put links to past posts and link to my old blog too, not to mention pictures etc… But for now I shall make a cup of tea and enjoy watching my sweet two weed the garden!

Having reached the decision that you need help as a parent of a child with special needs, what then?

Hang on a moment, that seemed easy!  I have yet to come across any parent who came to that decision easily or swiftly.  In fact, most parents I know who have special children do not get help and many do not want it.  After all, asking for help must surely mean that you are conceding defeat, failure?  That you are unable to do the most simple of jobs: be a mother?  And that’s before we embark on the question of relying on welfare benefits which can be very difficult for some; before we touch on the fears that social services may see you as a failure and take you children away; before the reality truly dawns on you that your child is not Norm.

What I’m trying to say, to make others understand is that we hate that we need help.  We come to this point out of necessity and desperation, often at our lowest ebb.  Should you come across a parent like me, who is getting what may seem to be a lot of help from various agencies, please try not to assume that we are “sponging”, that we are taking advantage of the system.  I hope that by giving a glimpse of the process by which we can access help, you may understand that it is a dreadfully intrusive, clinical and impersonal process which forces you to focus on nothing but the worst aspects of your life, of your child.

My journey through this maze started with a little boy who was not expected to survive to adulthood.  Tom’s hear condition and leukaemia were life threatening, and that label opens doors.  With that little sentence we enter the reality of my life.  My children have significant difficulties in life, and part of my job is to access every thing that might help them.  So I have learnt to play the game, to accept that certain words (when spoken in truth) will prick people’s ears.  Of course, when we arrived back in England with a little boy who was quite literally fighting for his life (oh, and his fight had a serious flaw in that he just wouldn’t eat), I didn’t know any of this.

I had a wonderful health visitor who knew the various avenues to follow.  So..

Crossroads – A charity caring for carers

We were referred to Crossroads, a charity that helps carers by providing a few hours respite each week.  I had no idea how to use such help.  I had been “coping” for months on my own while Nick went to work, driving hours to hospital for Tom and managing to keep the other two children afloat.  Now we were back in the UK, many things were easier.  The local hospital took over much of Tom’s care, we had an amazing community nurse and I had friends who were able to help.  So the idea of someone coming into my home to help was baffling, overwhelming and at a loss to make use of it.  And this is where a part of the system worked so well for us.  Crossroads sent us a wonderful lady with a wealth of experience who gently yet firmly took charge.  She taught me to rest, to go to sleep or have a bath.  To occasionally go out for a walk or even go to the dentist when needed.  She taught me that for a little while I could hand over and that all of us would benefit.

Our children’s hospice, Shooting Star Chase

Simultaneously we were referred to our local hospice, Chase.  How can I put into words the help and support they provided?  Going to the hospice was like stepping out of the world.  Tom’s illness stayed with us, but it was in some strange way safe and “ok” while we were at the hospice, sheltered from the outside world.  The peace there gave us true respite and there was always someone to listen.  We were with them for three wonderful, sad, happy and tragic years.

So from the time we arrived in the UK with our little scrap of a baby until he was three years old we were floated along the ocean of life in the boat labelled “life limited”.  All the care we received was provided by charity, a remarkable aspect of British society.  More remarkable still was that these organisations work so well with the “official” bodies such as doctors, hospitals etc…

The dreaded DLA form…

It’s safe to say that I didn’t have to fight for any of this.  The fight began when we were told to apply for DLA in Tom’s name.  Disability Living Allowance is a benefit payable to those who require more care than their “Norm” counterparts.  Application is via a form and backup from doctors and other professionals.  This is not the time or place to go in any depth into that form.  Suffice to say that it is long, involved and painful to complete.  One must detail all the negative aspects of the applicant’s life, and how much help they need.

As the mother of a child who was so ill, my main coping mechanism was to focus on the positives of his life.  And yet, I now had to look the other way.  And looking the other way took me straight into the deep dark ocean of grief.  For the little boy I did not have, for the little boy he might have been, for the pain he endured, for the treatments we so hoped would make him better but that could also make him so ill.  And it put me face to face with the fact that he might die.

I hate DLA forms.

With a vengeance.

Despite his diagnosis, treatment and all the care he needed (chemotherapy, heart surgery, tube feeding etc etc etc), Tom’s application was denied.  I am still fairly sure the denial was a formulaic one and that noone actually read the form.  But that day, the wind was taken suddenly out of my sails.  I had been convinced that asking for help was the right thing to do in spite of my fierce independence.  While filling that form out, my intelligence told me that Tom was indeed eligible for the help and that this was precisely why we paid taxes.  And yet he had been denied.

Stubborn as a mule? I can be, if needed!

Somewhere in that denial was born a little spark of defiance.  A sense of justice denied that was simply wrong.  That spark has little to do with my children.  The denial of fairness and justice is something I see every day and every day I am incensed by it.  It is left to those of us with the education, intelligence and strength (oh, and stubborn pig headedness) to stand up and say, “this is not fair, you are are not playing according to your own rules”.  In the case of Tom and his DLA, that battle was fought by my lovely health visitor.  A phone call sorted the problem out.

Oh, you may remember that I hate DLA forms.  Both of my boys are entitled to DLA and new forms need to be filled out at least every three years.  Last week I was told by Kesia’s paediatrician that I must apply for her.

I hate DLA forms.

This is how I tumbled into the world of respite.  Through little man Tom and his critical illness.  The next instalment is how we accessed respite and help for Zack, and how we have yet to succeed in accessing it for Kesia…

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