Friday, 30 January 2015

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 fro 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....

Zenas Suitcase

Wednesday, 21 January 2015

RTFM - or not! With "Same Difference" Link Up

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.

Friday, 9 January 2015

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.
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