It’s hard to believe that it’s only just past one week since I last posted here. As much as I would like to post more often, I’m trying to stick to at least coming here once a week. But this time, I’m in awe of just how much can go on in just eight days!
It was a week of high seas parenting. Get on that ship, tie yourself on and hold on tight while you pass through the storm. Actually, I’m a little happier with the roller coaster metaphor. Not so long ago (about three years, so a lifetime subjectively), I was very much in a little boat in the middle of the ocean on a dark stormy night. I had no idea where I was heading, or whether there would be any end to the turmoil, fear and pain.
Three years later, I can at least remember that little boat and I now have the experience to know that there is hope. So rather than being back in the boat in the cold and dark, I’m on a roller coaster. I hate the things with a passion, they make me sick!! But at least those little cars are on a rail. And the wonderful, salutary thing about rails is that the journey is predefined. If you can just hang in there, you will get to the end. You may be covered in vomit, shaking like a leaf and wonder why you ever got on in the first place, but you will survive.
The roller coaster I especially hate is the one that leads from failing education, through the dreaded “system” to the right placement which will allow a child to thrive. It is such a pervasive thing, education, especially when it goes wrong. It impinges on the world of health, family, social services and simple day to day living. But as I write this, I realise that the bottom line is that education is where it is all going wrong. My good luck is that I have experienced a deeply failing child before, and with the right support and environment, I now have a son who is blossoming. Of course, his bloom is quite particular, and doesn’t follow the standard expectations of Norm the Gardener. However, in the special nursery, he is seen as beautiful and full of potential. As strange as his growth and flowering may be, he may yet give the world something intensely more valuable than the pretty tulips or roses that adorn most gardens. Whatever he grows into, it will be worthwhile and hopefully productive!
Right now, I have two other children. Both of them are failing at school. Or school is failing them, I suppose it depends how you look at it. The reality is that neither is true. They are each doing their best, and therefore cannot be “failing”. The school is performing a Herculean task each and every day in their efforts to support them, so it is clearly not failing. To the best of their ability, both these children and their school are trying to meet needs that simply cannot be met in this environment. The failure stands firmly at “the system”‘s feet.
One of my “virtues” (I suppose one would call it that… it’s a bit of a double edged sword in my experience) is that I am very able to see many sides of an argument. In this case, I am keenly aware of the difficulty of assessing children with special needs. Of trying to meet each individual’s needs on a finite budget. Of ensuring that the right decision is made, especially when we are talking about children whose education is going to cost so much more than Norm’s. So when I am told that we must follow this or that procedure, I endure. When I am told that despite all the staff’s conviction that needs exist, we need to wait to gather “evidence” to present to the “system”, I wait, I gather, I watch…
But.
“Evidence” is too late. “Evidence” only comes when the child falls apart. When so much damage is done that scars will remain forever – if indeed the wounds ever truly scar. “Evidence” is only gathered when a child’s behaviour is so extreme as to merit paperwork, meetings, concerns. Tears, tantrums, panic attacks, deep sadness. Vanishing self esteem, self-harm, isolation. All of these things are “evidence”.
A parent’s concern is not evidence. Letters written to school to enquire about a child’s progress, homework issues, or to inform the school of a child’s distress are not evidence.
The trouble is that children tend not to communicate these deep dark secrets to school – especially if they have a solid functional bond with their parents. They confide in us. They trust us. They look to us to keep them safe.
The “system” does not like us, nor do they trust us or confide in us. So the only way we can help our children is to watch as they fall apart. Watch a little girl who loves learning and loves school reach a point at which the very building terrifies her and the ensuing guilt eats her alive. Watch a little boy become so excluded by his disabilities that he has no sense of belonging to the school he has attended since he was 4. Watch people who never imagined they’d be working with special needs children struggle with the important details of tube feeding – and sometimes simply fail to understand how important something like that can be. Watch as our children truly fail: fail to be happy, fail to think of themselves as worthwhile, fail at being children. Day in, day out, as the “system” plods along its unwieldy path.
Last week, I began a week with three darlings on the brink of disaster. Eldest had become convinced that I was evil and bad and was refusing to speak to me. Given our fragile relationship, this was a source of considerable concern. Sweet Girl was/is sliding into increasing anxiety and guilt about school – our plan for her is failing and we have no back up. Little Man was and is generally quite (very?) unwell, losing weight steadily and very pale. The ghost of leukaemia had raised its ugly head once more.
There is no way to create a positive in detailing the emotional roller coasters that we were enduring on three separate cars in the middle of that week. Darling Man was having to process little loop the loops at the end of a full day’s work and in his own Aspie way was managing – just. Unfortunately, his reflexes tend to make him shut down when overwhelmed. While that works for him as a coping strategy, it’s not the ideal way of riding those roller coasters as a couple. In some way, I felt as though he had simply stepped off for a while – thank goodness I know him better than that!! Let it simply be said that the middle of the week felt more like a month and the roller coaster was steep, bendy, dark and seemingly endless.
I’ve come to love a slightly tongue in cheek saying that was shared with me on Facebook (oh, yes, we’ll have to have a post on that subject sometime!!):
It’ll be alright in the end. If it’s not alright, it’s not the end yet!
On Friday, the roller coasters found a far more gentle section… all of a sudden, all together. Life is funny like that.
Tom had blood tests done on Thursday and I got the results Friday. Phew! Sigh of relief when the doctor told me, “white blood cells:7.9”. In fact, all of his blood tests came back normal. Good news? Well, I can lay the leukaemia ghost to rest for another while (sort of!!). I’m less happy about the fact that I have a little boy who is shrinking before my eyes, very tired and clearly not ok but no answers yet. However… panic levels are off red alert!
Kesia, thanks to a huge amount of effort and hard work on her part and angelic patience on mine, was able to complete some research and a report comparing Odysseus and Achilles. We copied the report to her teacher as “evidence” that she is at least keeping her brain working a little.
Zack, thanks to his wonderful school and superlative headmistress, called home!! We had such a lovely conversation and I felt as though my boy was back a little.
Oh that euphoria that accompanies relief!
I don’t drink (I just don’t like the taste of alcohol, and on the few times when attempting tipsiness, I go straight from normal to feeling sick… no pleasant blurry interlude, so why bother?), I’ve never smoked (yuk… smoke in your throat and lungs – never understood the attraction), nor have I attempted any less mainstream “high”. I may sound like a prude, or a “good girl”, but really it’s simply that none of that has ever held any appeal. Combined with a huge fear of loss of control (oh yes, big time control freak here – life is trying to beat it out of me, I think).
But relief following massive stress? Well,that feeling does seem to approximate what others describe as a “high”.
Worth it?
Nope.
Give me the flat roads of Holland to cycle along any day of the week. You can keep your roller coasters, high octane adrenaline sports, recreational (or otherwise) drugs and cocktails.
Now if only the universe, any gods who happen to be floating around, the great spirits of earth, wind and fire, Mother Earth herself would (just for a while) hear that little plea, and let me sit in my little roller coaster car without flinging it wildly around bends, up and down, right side up and upside down.
I’d be quite, quite happy.
My heart is lying calm with death this week… a subject that I have come to live with on a regular basis since Little Man’s cancer diagnosis. This week, a dearly loved family member died. Passed, left us, slipped away… the euphemisms are numerous and clatter in my brain which desperately yearns for truth and simplicity. She died. Her death was at once dreadful as I suspect they always are, for those in attendance especially, and also a blessed release from the slow agony of emphysema.
Simple Tangles 