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
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....