Tuesday, 27 May 2014

A Marathon not a Sprint

I read an excellent post on another Blog this morning, from  "Chaos in Kent" called "The Good, The Bad and The Ugly" sharing the author's perceptions of navigating life with children who have a complex set of additional needs.

As well as shouting "YES!!" very loudly at the computer as I read, I felt compelled to join her in sharing this reality that is also ours.

Every point was painfully, precisely, tragically and wonderfully spot on. It is the first time I have encountered such a frank and honest review of the turbulent world of parenting those with special needs - and particularly relevant when you have a muddled, ever growing collection of problems, symptoms and diagnoses. How unbelievably refreshing and totally liberating it was to read how I am, in fact, not alone.

A Marathon not a Sprint

Any parent - and particularly any parent in our situation knows they are in it for the long haul. This is not a race in any sense of the word, not a competition, not an enviable, pitiable, questionable or debatable life experience. And acknowledging this precipitates not only a prolonged learning process but a realisation that coping mechanisms are going to be required.

Given that all parents - and all children- are undeniably unique these coping mechanisms are going to be as numerous and varied as those who devise and adopt them. None are better or more worthwhile, none pointless and all are valid. To someone. Challenging these is cruel and uncaring, showing a painful lack of understanding of the complex position that person finds themselves in and acutely painful to the person who has built these supports in to their life. 

Coping mechanisms are like armbands (water wings if you are in the USA!) - inflatables that literally keep your head above water. Empathy doesn't come into it, no one can really empathise properly with anyone else as every situation is different. Acceptance is of far greater use!

I'm thinking of an orange with armbands now...

There are no secret solutions, magical fixes or one-size-fits-all regenerations. Superpowers are self made, born of trial and error.

Monday, 26 May 2014

Indigo Children - ASD/ADHD or just bad parenting?!

I've struggled with son number 2 for most of his 12 years. He does have a variety of diagnoses to his name including Autism and ADHD and I invariably notice similar traits all too easily in others, and in my other children also. That is not to say any of the other three would deserve similar diagnoses but since the Autism Spectrum is just that - a spectrum -  many of us share some of the aspects which combine to warrant a full blown diagnosis in those more profoundly affected.

What I also notice in my younger two in particular is how sensitive, aware and opinionated they are. They are old for their years in so many ways, bright and able yet certainly less socially adept than my eldest was at 8. They are intuitive and impatient with those less so, have their own agenda and can be alarmingly vocal about it. This is not an immaturity typical of a child a few years younger, exhibiting tantrums borne of communication difficulties. And unlike the child on the Autism Spectrum, who shares many characteristics with the so called "Indigo Children" my twins can tell you exactly what they need and want, communicate their feelings in great detail and are acutely aware of others' feelings also. They are far more self assured than I was at their age for sure, yet I have parented them in the same way as their older siblings!

I read The Indigo Children recently having been kindly sent a copy. To be perfectly honest, I'm more a science-based kind of girl, preferring Dawkins and Schrodinger to crystals and New Age theories. I prefer to view the world in all its complexity through the concepts of science and have absolutely no time for auras, the paranormal or synesthesia  which is how Wikipedia prefers to classify the Indigo concept. But the books I have read on Indigo Children are slightly unsettling - because they certainly do describe familiar traits which I see in my children. 

Many children labelled indigo by their parents are diagnosed with attention-deficit hyperactivity disorder (ADHD) and Tober and Carroll's book The Indigo Children linked the concept with diagnosis of ADHD. Their book makes the case that the children are a new stage of evolution rather than children with a medical diagnosis, and that they require special treatment rather than medications. This I can understand, some prefer to consider a "problem" as a desirable variant of "normal" . Certainly the number of children receiving a diagnosis of ADHD and/or Autism is on the increase and discussion of this generally accepted fact is frequently in the news and professionals are keen to determine whether this is better recognition of both conditions or an increase in their manifestation/occurrence which would be somewhat disturbing. Advocates of the concept of the "Indigo" child would respond that this is due to a surge of "old souls" (old before their time - self assured, confident, opinionated, not reincarnated) born since the 1970s who are misunderstood and misdiagnosed.

But I don't see ADHD in my younger two, some ASD traits yes but none more than your average 4 year old with a brother on the spectrum and I really don't feel comfortable with the "Indigo" label. Which leaves little else other than parenting style. As an historian with a keen interest in social history and in particular the social history of children I know the place of children in society has been revolutionised. From the early modern idea of children as essential, unavoidable and lower status providers to the family economy to the Victorian belief that well-off children should be "seen and not heard" (and poorer children merely an economic resource or an inconvenience) the lot of the child in history has - on the whole - been secondary to that of their parents and other adults. Many children never saw their first birthday, let alone their fifth and whilst loved and cherished by their mothers rarely attracted the attention we see today.

I see it everywhere, through the advertising of children's toys and luxuries, the play schemes and activities and in the attitude of many parents who live their lives through and for their children. I'm as guilty as the next in becoming caught up in the desire to give my children a good start, hoping for if not the best certainly a desirable close second in the many choices we make for them. I've resisted the rooms full of toys though, the luxury parties and excessive wardrobes of clothes but my four don't do badly! But I do expect respect and good behaviour from them and will not tolerate demands and tantrums. Yet despite our attitude at home the rapid elevation in society of children to a status far above that of their parents (at times) is infectious and has to have contributed in some way to the behaviour issues so many of us see so often today. 

The way we are encouraged to leap on every little issue, meet every single need at every level undermines core parenting instinct - and don't even get me started on the concept of "safeguarding" which has legitimised society-wide interference which further devalues parents. 

The pendulum seems to have swung too far the other way, precipitating a child-dominant culture which has nurtured and encouraged the Indigo type. I actually think the Indigo personality is a reality (I suspect I have two borderline Indigos here!) but I honestly believe this is a product of the social changes we have seen since our economic circumstances have enabled a radical remodelling of our children's role in society. Parents have been under fire for too long, for ignoring their child's needs at their own expense when a little balance would satisfy everyone's basic needs. Indigos are only here to stay if we perpetuate the necessary environment for them to flourish in. 

There is a HUGE difference between a smart, opinionated kid with an advanced awareness of their place in society and a child with ADHD and/or ASD and confusing the two does a huge disservice to the latter group. Indigos are a product of the social changes in recent decades in my opinion and different (rather than bad (or good)) parenting and a clear reminder of the direction we find the world heading in.

Friday, 23 May 2014

Today in photos - or The One where I recover my Sense of Humour

Yesterday was a tough day with poorly boys and a stressed out Mum. Today didn't look much better given that we had an appointment at Great Ormond Street, but we managed to pack some fun in on the way!

So, we were at the train station early this morning and H's grandmother communicates her concern that he might be worried about his London trip, via text message. His response?

"Show her my Excited Face Mummy!"

So I did.

Unfortunately due to the wonders of modern connectivity crap connectivity provided by Vodafone she didn't get this until after we were home. No matter...... it's cute, right?

"Are we there yet?"

Due to the impressively punctual completely unreliable and totally frustrating "service" offered by Abellio Greater Anglia most of the trains into London were cancelled this morning. Apparently, saying "sorry" makes it all ok though. Isn't that nice?

So we had to head right into Liverpool Street on the 10.09am totally made up service cobbled together at the last minute and then head BACK to Westfield for a spot of shopping. 

EXTRA fortunately we both managed to retain our sense of humour after coffee/pretzel/smoothie/brownie (delete as applicable) (Don't delete because it really did take all that to recover ourselves.....)

The Power of Coffee. Works Wonders every time......

I did ask him for a re-take as he pulled a daft face... but got the response "I'm all Selfied out now". Of course. After one shot. A better than usual one of me though so I'm not complaining!

That was the fun bit. The not-so-fun-bit followed, with talk of further appointments, interventions and a blood test. The last precipitated a sense of humour failure, right after they decided to take blood from the vein also known as "Dandelion". NO idea on that one. But since I have endured enjoyed approximately four hours on the playing/sales/viewing stats of Zelda games,  plus everything you ever didn't want wanted to know about the Wii U I decided not to ask. Dandelion it is....

By some complete miracle, we managed to escape EARLIER than anticipated (GOSH friends will know how incredibly unlikely this is) and jumped on the first off-peak service home. Amazing.

Bit tired now - scoffed the chips, need a nap. 
(And that was just me, so goodness knows HOW tired he is!)

We arrived home to a happy house with a nearly-finished-my-GCSEs-and-it's-now-half-term happy 16 year old and two jolly 8 year olds who have been told they have the teachers they want next year. 

So that's Friday night SORTED. Unless you are Oscar, for whom it was decided "Hugging Therapy" was required. 

Now that's one SERIOUSLY unimpressed cat. 

So, sense of humour recovered, kids in bed, (well, it sounds good but actually two of them are NOT yet in bed....) and I'm DONE for the week. 

Happy Bank Holiday!

Monday, 19 May 2014

Climbing Everest

I wrote this post nearly two years ago. It's still so, so true - and describes why mums of children with additional needs often feel so isolated.

Today it all really got to me.

Several times this summer we have tried to see friends and be sociable. Not just for the children - for me too, this parenting lark can (as a close friend astutely pointed out last week) be a lonely business. Particularly when you have a child with additional needs. Or two. Or three. But after today I think I will be focussing on the positives and staying home.

It's not that I'm "fed up" with all the issues, (well, I am a bit!!) or that I'm having a self-pitying moment, it goes deeper to be honest. It's hard to describe... which is precisely the problem. HOW do you describe to others the difficulties daily life presents, how normal activities are nigh on impossible some days - so challenging you just want to curl up and not try? That might sound defeatist, but it's this growing chasm of experience which is having such a profound impact, in many ways I feel so far distanced from the majority of parents on a daily basis.

Take yesterday.

A lovely picnic with school friends of K and A before term starts. To start with it seemed straightforward.

  • It was a weekend, so H (who is currently in non-stop meltdown as the new term approaches) could be left with Richard at home.
  • Since it was a picnic the twins should not feel "different" with their food as everyone would be taking their own sandwiches, right?

But kids inevitably share so we had to read sweet labels and draw at least some attention to ourselves. (quietly!) Then the new Mum in the class wanted to know why my two couldn't eat certain things... and didn't understand why intolerances didn't mean small amounts were OK and how their "gut allergies" differ from immediate ones. I mean, why would she? It's not like I'm an expert on anything my kids don't have, if it's outside your world experience you can be forgiven for not knowing.

But that just makes the gap wider. And deeper.

Tuesday, 13 May 2014

Second Same Difference Link Up

Welcome to the SECOND "Same Difference" Link Up!

Here's my entry:- REUNION
Now it's YOUR turn!
The "Same Difference" Linky

Have participated in a number of Linkys recently, both here and on my other two Blogs I have really appreciated reading others' views, experiences and perspectives.

"Same Difference" is a new Link Up for posts which offer a new perspective on life and enlighten, inform and provoke.

This includes the mundane as well as the unique, anything that challenges the assumptions of society or attempts to put any viewpoint in a "box". 

I'm all for challenging and questioning!

  • Does your child have additional needs which make milestones more difficult to reach - celebrate them here! 
  • Do YOU have difficulties which mean whilst ostensibly the same, make you feel different?
  • Do you have a different slant or outlook on life? A wry comment to make about society?
  • Do you have a child with wonderful quirks and/or who makes comments which make you think about the mundane in a new light?
  • Share a photo which prompts a new perspective
Almost anything goes , this linky is to celebrate difference, difference in views, abilities, achievements, anything! 

(A bit like "Different Strokes" but that name is taken!)

How to join in!
  1. Add your link below to enter
  2. Add my Linky badge to the bottom of the post you are linking up
  3. Visit, share and comment on some of the other posts.
That's all! Get linking :)

Here's the Badge Code:-

<a href="http://musingssahm.blogspot.co.uk/2014/04/second-same-difference-link-up.html" target="_blank"><img src="http://i2.photobucket.com/albums/y7/kate29thompson/Linkybadge.jpg" style="border:0"/></a>

The Guinea Pig That Waited - A Reunion

This is H, our second son. We moved three and a half years ago to find better school provision for him, and to afford a bigger house for our growing family. It was a really positive move all round, and after initial upset he soon settled.

Last weekend we visited our old village and his old school, as the preschool/after school club he attended invited us to their 40th Birthday celebrations. As former "webmaster" I was invited, and H was a regular at both their after school club and holiday play scheme.

It was a very wet and windy afternoon on the whole, but lovely to see so many familiar faces. H found it a little odd and was extremely restless, searching for a couple of old friends -  and something else.

This was the something else.

Friday, 2 May 2014

"Combat" or "Survival" Mode?

My children are Minecraft Mad. All of them.

My eldest has taught himself to code to a pretty high level and built his own website from scratch, hosting his Minecraft Servers at MCSquared (Currently taking his GCSEs though, check back in the summer for an impressive redevelopment!) and builds worlds as JJtCool on YouTube . He was the creator of SkyWars a few years back and SkyWars2.0 which are played, viewed, shared and hosted worldwide. He even got a mention at Minecon2013. Quite an achievement.

Son number two is almost as fanatical and the twins are catching on fast. I must admit, whilst I don't want any of them stuck in front of a screen for too long, they could do worse. Minecraft encourages social interaction, improves social skills and if you are building worlds there is some GCSE level physics involved. As for coding a website  - his Dad's team at work had all come across him on YouTube independently he's getting headhunted already...

H speaks endlessly on his favourite topics, Minecraft being one of them. He will relate the different options and modes and I am beginning to feel I know far more than any parent strictly should.

Something he said yesterday early made me think though - he is incredibly perceptive.

Tough Week
We've had a *really* tough week here. A had surgery at Gt Ormond Street Hospital last monday (only minor, but an overnight stay was involved and the planning and preparation needed was pretty "epic". R had laser eye surgery for his glaucoma and we've had the worry hanging over us that J had a possible, but very serious heart condition. Thanks to an overly zealous GP, and the truism that "a little knowledge is a dangerous thing" his normal ECG was misinterpreted and we were told he needed an urgent cardiology referral. (Thankfully we have private health insurance which we sometimes use - it is invaluable at times like this since he would have had this worry hanging over him for the duration of his GCSEs and had to stop running.) 

Anyway, before Godparents, Grandparents and concerned others get on the phone - he's FINE. More than fine actually, so fit and healthy his lean, tall, athletic build is causing high voltage ECG traces and a low BP. Impressive. But stressful - and very, very scary.


Then there have been an insane number of appointments and meetings, to the point that I found myself sat in the phlebotomy clinic (blood tests) the other day troughing my way through a jumbo sized bag of chocolate buttons. Which I bought. And finished. By myself.

Those of you who know me will understand why this is significant but suffice to say my stress levels have been pretty high! Now you wouldn't necessarily expect someone on the Autism Spectrum to notice emotion in others - but H does. Or maybe he isn't noticing the emotion, rather the pattern of behaviour? In any case he is usually the first to register my rising stress levels.

High Anxiety
For someone on the Spectrum, high levels of anxiety are a norm, and it doesn't take much to trip someone in that state into "meltdown". It's the reason little things (the "final straw") can set off disproportionate responses, explained so eloquently in Alison's Blog here. What is particularly poignant is that Alison is 14, yet has an incredibly understanding of her identity.

H is like this all the time. Constantly anxious, working in parallel on several ideas/thoughts/problems at once, all piled up. Autistic people do seem single minded - but that extreme focus is actually often to drown out the overloading below it they find unbearable. it's a coping mechanism.

And that's exactly what H thinks I need. A way of fending off the stress rather than  trying to cope with it. In a wonderfully idiosyncratic,  acutely perceptive observation on the situation he told me
"You need to drop out of "Survival mode" and try "Combat mode" instead".
Of course I do. Why didn't I think of that?

Fighting Back 
So that's just what I am doing. Back in organisational hyperdrive and tackling life head on once more.   And when "Survival Mode" really is the only option it often pays to take a back seat and find some humour somewhere - anywhere in the situation.

So I'll leave you with my youngest son, who having recovered sufficiently from his surgery wanted to make his dad laugh. We made this picture together and emailed our printer - frightening the life out of R who was sitting next to it, working. "Awesome!"

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