The Gloves are Off

With the General Election coming up I find our recent experiences with the NHS even more relevant.

In the past year we have lost our long-standing psychiatrist, our ADHD nurse, our dietician, our physio and experienced ever worsening care. 

Despite having a child with complex needs on ADHD medication with a Team Around the Child system in process only the physio got replaced - and by someone who neither knows our family or cares two hoots. Obviously she knows better in five minutes than professionals who have worked with my kids for 5+ years though, which is just as well as few kids with a socio-communication disorder can bypass the years (yes, years) needed to build up a relationship to share their feelings and concerns. (And of course it cuts to the chase and saves oodles of time which would be wasted discussing the case with a parent who is obviously clueless having lived in a bubble for years not caring night and day for their kids.)

Roulette Wheel by Hakan Dahlstrom

Seven Stages of Parenting a Child with Additional Needs

They say there are "Seven Ages of Man" and also "Seven Stages of Grief". There are also seven stages of parenting those with additional needs! This week has seen much thought and consideration for change here at Thompson HQ, we've taken stock and realised how far we have come, what we have learned - and just how far there is to go. Life with any child is a series of stages, but when complex needs are thrown into the parenting mix life takes unexpected turns. As with grief, it can really help to focus and accept these different stages, and I believe doctors and health professionals should take note too.

Parents of children with medical or other additional needs do indeed go through a grieving process, but that only becomes clear further down the line. Many are told of the wonderful poem by Emily Perl Kingsley, "Welcome to Holland", and indeed the poem does offer real comfort to many as they journey through the "Holland" that is their reality, rather than Italy where everyone else seems to be.

Parents of Special Needs kids frequently do feel "different", isolated, set apart, lost, sad and confused. It's not an easy problem to fix either - because no one has actually done anything wrong, but the best intentions in the world cannot always bridge the gap between where we find ourselves.... and where we intended to (and assumed we would) be.

Over the years I have run, moderated and supervised support forums for parents and noted how everyone does indeed seem to move through these discrete stages.

Stage One - Ignorance
You don't really understand what is going on so it doesn't really matter what the professionals tell you... Just will someone PLEASE sort your child out so you can go home and forget about the whole unpleasant experience??

Stage Two - Learning
OK. It wasn't quite as simple as that. Neither is it going to magically go away..... better start clueing yourself up because knowledge is power, right? We can DO this!! Many parents join support forums at this point, utterly convinced there are easy answers readily available.

Stage Three - Hope
Understanding is coming - you are the new expert on not only your child, but their problem is also currently your special subject. There is so much more awareness and understanding these days, this is only a short term issue and you will be back at work/running/socialising/SLEEPING any day soon. Right? The professionals are doing all they can and answers will come soon - and a complete fix is definitely possible. You constantly chase for hospital tests and appointments - you will take any cancellation - desperate to move on because there IS a cure or fix to all this. Many parents switch between multiple consultants, believing it's only a matter of time before they find the Holy Grail - a diagnosis and cure. Better times ahead.

Stage Four - Anger 
You know way more than any professional thinks or would acknowledge and get very angry if they hold back even the tiniest piece of information, or worse still know less than you. Because sadly that happens frequently, health professionals have specialist areas which might not cover your child's difficulties.
At this stage you also know your child inside and out and will correct anyone that implies otherwise. Mama Tiger has nothing on you,  watch out anyone who tries to change the wording of YOUR child's Statement when you aren't looking, no "is entitled to" will do! You've been in the system long enough now to know only too well the shortfalls, cracks and difficulties. After this long tunnel vision kicks in (or is that chronic sleep deprivation?!) and the eyes are on the prize. Your child WILL get the support they need.

Stage Five - Depression
Why me?

All your hopes, dreams... you love your child unconditionally but sometimes.... sometimes it's just TOO hard. TOO much. And when a friend has a perfect baby and only visits hospital once in a blue moon.... well that just isn't fair. This is such a hard phase, and can seem interminable. Sometimes only antidepressants can move you on, if Stage Four did not elicit sufficient support this can be a long, hard road. Friends are crucial, but so hard to retain on this journey of a lifetime. Many couples separate at this point, only the strong move on to -

Stage Six - Denial
Because it's actually not so bad. Really. You are trying a med wean and it's going to work. Moving on from the feeding tube, growing out of the ADHD. Definitely. Things are definitely getting better and anyway, you are DONE focusing on medical issues all. the. time. And those appointments - every six months is QUITE enough thank you. You stop chasing, stop calling, stop asking. You know there are no answers, but it's ok, because you are all ok. Really. It's do-able.


Stage Seven - Acceptance
By this Stage you know more than you ever wanted about our child's condition, services and support (or lack of) that is available, and accept that your are in this for the long haul. You never were bound for Italy. It's not "ok", but it's reality. Your reality.  - Mind you if anyone else tells you that God only sends difficulties to those strong enough to cope with them you *might* just have to say something, Or slap them.

The hope of Stage Three - that utterly exhausting carrot-on-a-stick always just out of reach which ran you ragged is gone. You are tired - but not depressed. Realistic not pessimistic.  The notion that there is a magic wand out there almost laughable.

In actual fact, Stage Seven is really just as much "flying by the seat of your pants" as Stage 1 in many ways, only you have the Wonder Woman suit and a manual this time around....

RTFM - or not!

My brother and his partner have just given birth to a gorgeous baby girl - their first child, and I was reminded how simple life was with one little one. That is if you discount the hours screaming, refluxing, washing etc which was pretty much 24/7 with all four of mine, but it's definitely easier riding the reflux roller coaster the first time around, with only one to juggle!

In the lottery of life I pulled four straws all labelled "reflux", "gut allergies", "hypermobility", "ASD" and "ADHD", (and more, but the straws kind of ran out of room at that point... ) four straws - children - with many talents, gifts, personalities which enrich my life hugely on a daily basis.

Except first thing in the morning.

Mornings, are without a doubt, the most testing time known to parents. The knowledge that you are solely responsible for getting your brood to school with all they need, looking immaculate respectable  and clean is a tough call. Add in the necessary physiotherapy exercises, medications, normal teenage reluctance and exquisite ADHD/ASD-type screaming that only H can do and it's a potential recipe for disaster. But over the years, we have perfected survived and achieved this miracle on an almost daily basis. Which is actually quite impressive.

My children are not all at the same school - that would have been cheating, (far too easy!) and contrary to popular opinion this is due more to accident than design. It means my morning and evening school runs are staggered, and require Advanced Level Planning to coordinate. I am now at Expert Level in the art of School Run Juggling, using the additional ten minutes gained when H started at High School eighteen months ago to indulge in a morning cuppa before heading out. Utter indulgence - and something I've *really* missed this week.

You see, in the roller coaster that is life with kids who haven't read the manual, sticking to the plan was never going to happen. 

With a child on the Autism Spectrum, the moment they find a friend and they "click" is hugely significant. It transformed my son, and the past few years have been helped enormously by his increased social happiness, and confidence - particularly in school. We've worked hard to support his burgeoning social life, and indeed last summer it seemed that we had it cracked! He had a lovely group of friends and was becoming a little more independent and confident. Not for one day did we take this for granted, and we fervently hoped it would last.

It didn't.

H's salutary, if clumsy social efforts not to exclude any in his new group seriously backfired. One of the newer friends decided the group would be a better place without my son, with all his quirks and idiosyncrasies, so he was eased out. But the complete lack of explanation from these former friends, giving him no understanding as to what he might have done wrong has been devastating. Gone is all his social confidence, his independence and school is once more a trial and challenge on a daily basis. It's truly heartbreaking to see.

Frustratingly, rather than being able to focus on this issue with the others neatly playing ball (I'm sure there is a page in that manual about only one crisis at a time?!) two others decided it was a perfect time to fall apart. Of course it was! So to cut a long story short, my school run is no longer the straitforward single trip with one child walking to school with friends. It's multiple drop-offs and collections starting earlier and finishing later. This is mildly inconvenient at best, (there is a good reason I have avoided the twins'  school car park for the past five years) seriously stressful at worst and most significantly my cup of tea slot has now evaporated. There isn't even time for an espresso.

So I'm currently living in a chaotic, have to make this work, no other options kind of haze; fuelled by the caffeine I should never have attempted to give up and determination a mother lion would be proud of. Writing of any sort has taken a back seat for now, although I do sometimes idly consider writing my own tongue-in-cheek manual for those with children with additional needs. After all, humour is the best medicine and those chunky books are good coasters.

So huge congratulations to my brother, and here's hoping your  little one has at least a passing familiarity with the manual... If not, it's a total waste of time buying a copy yourself, unless you want the (not insignificant) satisfaction of chucking it out of the window and flying by the seat of your pants.

After all, life's never dull that way!

Nous sommes Charlie. But nous sommes so much more.

My first post of the year was going to be something along the lines of "Most Insane New Year's Resolutions Ever", for which I intended to offer my best contender of 2015.

In a moment of inspired positive thinking insane lack of forethought I decided to give up coffee and wine for January, and thereafter significantly reduce my coffee intake. I'm not sure what induced me to consider such a crazy notion or how I imagined I would function without the former - or recover without at least occasional doses of the latter, but suffice to say I lasted a week!

I also considered recording aspirations and intentions for the year ahead, but frankly life has never adhered to any carefully made plans and flying by the seat of my metaphorical pants whilst ricocheting off the usual (and unusual) obstacles life chooses to throw at me is, apparently, the only way to live. (Small wonder I never managed to ditch the coffee, in the absence of a crystal ball and personal Doppelgänger rocket fuel coffee is a survival prerequisite.)

It's been a hectic start to the New Year, my parents managed to both catch 'flu despite having the annual vaccine, and it hit them hard. Along with our usual health issues, school social issues and my rapidly reducing tolerance levels for such a high level of daily "excitement" it's small wonder I crashed spectacularly today. There is only so much adrenalin the body can take, today mine threw its toys out of the proverbial pram and dictated that I spend several hours sat on the sofa only moving my rm to drink tea, and perhaps my fingers to type in a kind of quasi-recovery. Blogging is without doubt the best sort of therapy there is.

I've read many articles today, several about the depressing events in France. One of the reasons I blog is because I do believe we all have a right to an opinion, and whilst tact and diplomacy is central to responsible debate there is never, ever an excuse for violence in disagreement. The massacre in the offices of the magazine Charlie Hebdo is indefensible, no matter what your religious beliefs are. The pen is, in the long term, far more powerful than the gun. (By pen I include typed words, and the power of social media.) The #JeSuisCharlie hashtag has spread across the whole world via social media platforms and millions unite to condemn the recent horrific events.

It is an important, valuable and human response to tragedy and extremism, but also evidence of something more - that whilst the articles written and cartoons drawn in responsive solidarity to these events demonstrate how the human race still values intelligent communication there is a parallel modern trend to over-simplify and reduce complex issues to a strap line, a buzz word or a slogan.

Rockin' Robin

This is not a paid post, I wasn't even asked to write about our forthcoming holiday at Potter's Leisure Resort. But sometimes, a spontaneous "Thank you, please keep doing what you do best!"  is needed. Just because.

I love Robins, we have a few tame ones here and they are really friendly. Too friendly in fact as our black panther cat managed to catch my husband's favourite last winter, much to his dismay! Robins do indeed "rock", they are wonderful birds but this post is more about the paper kind of "robin", that frequently enclosed in Christmas cards!

Photo courtesy of Jacob Spinks on Flickr Creative Commons 

We have received (and sent) fewer and fewer Christmas cards in recent years. Those I most enjoy receiving contain the "round robin" updates frequently sent to fill us in on last year's events. The modern version comes complete with colour photos, even the odd url to add detail. Those we receive are usually a lovely read,  I am always pleasantly surprised! Whilst I have been guilty of sending them myself in the past with everything pretty much online now I suspect friends see more than enough of my family the rest of the year, so I abstain. Anyway, to send one you need to write cards, and those left for me by the time the children have selected the best are barely worth sending!

Cartoon from Some eCards

It's all gone Pear Shaped

This over 40 lark is pretty cool, most of the time. But occasionally age sneaks up and catches you unawares, rocking the thirty-something boat you had been comfortably sailing in and dragging you back to reality. It can be quite a shock.

Of course, age, or "ageing" can be a beautiful thing. And whilst there is certainly a tipping point (I would deny embracing each birthday with the enthusiasm my children do) I have relished aspects of time's inevitable progress. Occasionally it even seems I get "one over" on the years - slipping back into my pre-twin pregnancy jeans a week after delivery was certainly impressive - but what matters most to me, and indeed to most women, is feeling in control. Surprises I can do without.

No longer shopping in GAP sale because your parenting style is less "Toddler Taming up close and personal" and more "stroppy tweens from a distance" is certainly liberating. But that in effect is taking back control a little, identifying with your own needs. So when there is a lack of reciprocal cooperation from the body you have (for the most part) completely ignored for most of the past twenty years it seems reasonable that it should just have been placed "on hold" until you had time to get back to it...... I never thought for a minute it might have started to change - at least a little.  After all , I'm IN it, I would have noticed, right?

Wrong. Gravity has struck back and appears to have taken the first round.

What is particularly infuriating, is that this hasn't crept up on me in a slow, inevitable process over a couple of years. Neither have I gained weight. It is simply a case of Middle-Aged Spread. Or more precisely.... Middle-Aged Spreading Out.

Photo courtesy of Kiran Foster via Flickr Creative Commons

I'm not that vain, I almost never weigh myself and barely cast a glance in any available mirror. I don't have time - or the remotest inclination. But I do expect the "me" that looks back when I DO choose to focus beyond the varifocals at my reflection to be somewhat familiar.

Is that totally unreasonable?

So yesterday I was brought up short (literally) as I saw myself in our full length landing mirror, actually pausing long enough to register the image reflected. At 5'9" I'm a pretty lanky sort of girl, the GAP "Long and Lean" variety when it comes to jeans. But yesterday for a fleeting moment I thought someone had swapped our mirror for a fairground one as I appeared shorter and, well... with a rear end more J-Lo than previously. More "pear" than usual you might say..... more "Curvy" than "Long and Lean" at any rate.

A quick weight check reassured me that I really hadn't been scoffing chocolate biscuits whilst sleep walking, so I am forced to face the inevitable. That it's time to start telling people tall and skinny is SO last year and I'm embracing my inner Pear. Booty is Bootiful.

Now I just need to book into that Latin dance class......

5 Common Misconceptions about Christmas

Seriously? Christmas? Already?

Those who know me know I have very mixed feelings about Christmas. I was supremely fortunate to have enjoyed many cosy traditional Christmases as a child and dislike the overtly consumer focussed festivities of today. (Whatever possessed John Lewis to blast Carols in their store yesterday clearly wasn't Christmas Spirit, since it's not even December!) Constantly torn between wanting a "perfect Christmas" and resenting the fact that it's yet another set of tasks and responsibilities I usually spend December flitting between states of anxiety and excitement.....

So what would my advice be for a successful Christmas?

• Know your limits - and your limitations!
• Start early  
• Keep everything low key ... and 
• Acknowledge the common misconceptions that invariably lead to disappointment! 

Failing all that wear a paper bag for the whole of December and pretend its not happening.

5 Common Misconceptions about Christmas

1) It's Merry

This really depends on how well stocked the drinks cupboard is. The true Spirit of Christmas might not be found there but by 1am on Christmas morning - when your little overexcited insomniacs are *finally* asleep - sipping Santa's brandy hardly cuts it.

I find underestimating the distress involved in actually making it to the Big Day is my biggest failing. I peak too early - the Christmas Spirit hits about mid December, but the unbelievable sense of relief when I know everything is done leaves little room for merriment. I'm exhausted, utterly burnt out and stumble incoherently through Christmas Day with or without alcohol!

2) Giving is better than Receiving

Tough one this. I do wholeheartedly agree, since I derive huge pleasure from planning, wrapping and giving gifts at Christmas. But context is essential. I'm not worried whether I receive any wrapped gifts, our family don't really give to adults but receiving a "day off", an invitation to dinner where someone else cooks or an unexpected bottle of Prosecco would win hands down. Every time.


3) It's precious Family Time

This one really makes me smile. In many ways I guess it is, and we've had our chocolate box Christmas moments in our time. But it's only "precious" if "family" is in small doses, carefully spaced and with strictly moderated interaction. And that's the immediate resident family. Adding anyone beyond that needs meticulous consideration as too much exposure to the usual fighting and squabbling that is commonplace here is likely to leave lasting damage. Don't get me wrong, my family love each other dearly - but from a distance, through closed doors and as long as they are not coerced into a long, drawn out meal around the same table.


4) It's the Thought that Counts

I think this one depends hugely on just how well conceived that "thought" was. A last minute "It'll do!" spark at 4.30pm on Christmas Eve is unlikely to count for much at all, but anyone giving serious consideration and bravely going one step beyond socks for him, smellies for her and something from Poundland for the kids (you know who you are!) scores highly in my eyes. Most of us have far too much and want for little, having someone take the time to choose something as a gift is genuinely giving so much more. First World problem it might be, but it's easier to solve than you might think. Give a night's babysitting for a busy family, a hot meal for an elderly neighbour or a week of dog walks to a working couple. For me it's TIME that counts. Thinking counts when it involves consideration of others.


5) It's White

Seriously? WHEN was the last time you had snow at Christmas? Unless you live in Northern Scotland, not many UK readers will have had a "White Christmas" in the past twenty years, the last one I remember was 1993. I mean, who associated the Festive Season with the fluffy wet cold stuff that usually falls in January or February? Or March. Or even April - but not December, or at least not for Christmas. 2010 was snowy, and cold - but all melted on 24th December just in time for Christmas.

I guess the only thing in Christmas's favour is that it's marginally better than New Year. But just don't get me started on that one..... Humbug anyone?