Pack up your troubles

It's been a while. We have been rather busy..... 

Four kids, three schools and the end of the school year does not a peaceful time make! I barely seem to catch my breath from one day to the next right now, and my eyes are firmly glued to the prize that is two weeks time, when three of my brood will finish for the holidays. Managing the end of term for one is an absolute breeze - except perhaps when you enjoy the holidays a little too much and forget that one child still needs to leave the house by 8am. Easily done!!

I wrote recently about the difficulties faced by families coping with an array of symptoms- often invisible but nonetheless debilitating, but to which no health professional appears willing to attach a name. That was our reality. The day-to-day self-justification, scrutiny and lack of coordinated care.

Until now.

This week, our label - our confirmation, passport and vindication, our acknowledgement, acceptance, understanding and formal diagnosis dropped on my doormat. 

The letter was not long, but I could not take my eyes off four key words. 

Unable to read, let alone process anything beyond this, I sat for some time just staring. Because not only did we now have a diagnosis, but something truly significant had occurred. Members of the medical profession had actually got off the fence, carefully considered all the information available, and made a decision. That in itself is pretty phenomenal, but that decision - in one single action - removes so much frustration, despair and confusion. 

So what does this mean? 

It means, I don't feel I need to explain that my son feels sick most mornings, and suffers frequent headaches. Instead, we can move on to how to help him feel better. I no longer have to justify pre-emptive care to ensure my youngest son and daughter can continue to join in as much as possible in school, not overdoing things one day only to wipe themselves out for a week. Now instead we can now help them pace themselves carefully. It means basic monitoring will hopefully limit future pain, that my children won't need to learn at age 40 that things they took for granted will be taken away from them. And it means that I am vindicated. Because sticking your neck out for something you believe can be extremely difficult, despite support in high places. Our local hospital has vehemently resisted the verdict from GOSH for two years, making me feel helpless, and marginalised.

You see, having a diagnosis can be the most positive step forward. It's like gaining a suitcase, a suitcase large enough to hold everything you have been juggling, managing and coping with, that you can pack it all in to. And the very fact that it fits so neatly seems to make those burdens lighter, the cumulative whole being less than the individual parts combined.

Because, after all, you can go places with a suitcase.

The difference between teaching and learning

There is a news article doing the rounds reporting how Australia's Prime Minister "doesn't get why kids should learn to code". Further scrutiny however reveals the glaring misunderstanding is not that Tony Abbott fails to appreciate the value of a basic ability to code, but the fundamental misunderstanding common across the world over not what kids should learn, but how.

Not one of my four children have been taught to code. Yet three of them can, and one is extremely adept. For me, coding is on the event horizon of education - or Education (capital E), because we still misunderstand how children learn and persist in seeking to quantify, quality check and present a body of information to be relayed to the next generation as if Gladstonian Liberalism were still the cutting edge of education planning. I believe the Coding question will define how the next generation of children learn, and what is fascinating is that we had the answer all along.

Somewhere over the rainbow...

Once upon a time there was a little girl called Kate. She spent much of her time playing with her dolls, imagining the day when she would have real babies of her own. As that little girl grew up, she spent most of her free time baby-sitting, with babies and children, making plans for the future.

But you know what they say about planning too far in advance!

I always wanted a large family, ideally 4 or 5 children. However I hadn’t bargained on the chronic health and developmental issues my brood share between them - or our shared infertility. We managed to delude ourselves that #3 would be free of gastro issues and were utterly in denial over our second son’s Autism at that point, but when #3 turned out to be #3 AND #4 we realised we had as much as we could cope with. Possibly more at times….. It was a no-brainer deciding that we are done!!

That, however is different from "feeling" you're done. I do really miss the tiny baby thing, wish like hell that I could do the early months again with any of them without reflux and pain, I feel really cheated on that score. The constant screaming was a bit wearing when everyone else seemed to get at least 10 minutes a day cuddling their new babies - and unless you have survived on less than 4 hours sleep for months on end you won’t appreciate how much we were “surviving” rather than living.

No diagnosis? What's the Big Deal?

Today is Undiagnosed Children's Day. And yes, every day is a particular awareness day now it seems, and yes, it's Allergy Awareness Week too and I already blogged about that on my Recipe Blog.... but this one, this day, really REALLY matters.

You would be forgiven for thinking a diagnosis is an expected and usually almost inevitable end point when you or your child is referred for consideration of a collection of symptoms, often present since birth.  Indeed when you are first sent to hospital with your baby you have high expectations of enlightenment from the medical profession, and although no one seeks a "label" to define their child, it's a commonly accepted fact that a diagnosis in the UK is a passport to services, support, understanding and a pathway to appropriate supportive - and preventative care.

So you might be shocked to learn that  it is not given similar status by Consultants and health professionals. Indeed, there is a culture in this country of diagnosis avoidance, a pretence that by hiding from the logical, avoiding the obvious or avoiding searching for the unexpected they are in some way leaving doors open to you or your child.

I'm hoping for an ASD, ADHD, Down's and Spina Bifida Baby......

Because all parents-to-be, when starting trying for a baby, hope their offspring will be as healthy and happy as possible. Because we are human, because we associate good health and happiness with wellbeing and they are surely two of the most important gifts to bestow on anyone. Surely that can't be controversial?

And equally, once that tiny bundle arrives in your arms, you love it unconditionally, and want the very best for your child. It doesn't matter what peaks and troughs there are ahead on the roller coaster of life, you're in it for the long haul and are your child's fiercest advocate. Irrespective of anything. And that shouldn't be controversial either.

SATS - a sandwich, not a hot potato.

Yesterday Nicky Morgan announced that the Conservative Party would introduce SATS re-sits for children who perform badly in their Year 6 primary school tests. In the short time since many have already written of their strong anti-SATS feelings, compounded by anger and frustration that children will be seen to fail in this way. Having written myself against Gove's extreme passion for measuring and testing previously, you would be forgiven for thinking that I would be equally against this new suggestion. However, I don't think the situation is as simple as that, and - as ever, we are missing the elephant in the room.

The question is not "Should we have SATS, and are they good for our children?"

but 

"What is it about them that upsets parents, teachers and possibly children?"

Light it up Blue

A sobering thought, don’t you think?

But what if the word “excluded” didn’t refer to a single incident at all?

I still have a stack of fixed-term exclusion notices for H from when he was very young — forty-six of them, all issued before he was six and a half, and more than a year after his Autism diagnosis. It raises an unavoidable question: what exactly is happening in our schools when children with recognised developmental conditions are repeatedly excluded for behaviours that are fundamentally part of their condition?

Despite the tireless efforts of the National Autistic Society, local groups and countless parents, teachers are still entering the profession without the preparation they need to support autistic pupils. My own PGCE allocated half a day to SEN as a whole — nowhere near enough time even to familiarise ourselves with the full spectrum of physical, emotional, behavioural and medical needs we were likely to encounter, let alone explore how to teach and support children with them. And beyond training lies a deeper reality: for many autistic children, mainstream school is simply not an appropriate environment. Forcing a square peg into a round hole was never going to work, no matter how determined the adults involved.

As a parent of autistic children and a qualified teacher, I’ve learned more about learning, development and support than any lecture could have given me, yet ironically I wouldn’t currently be eligible to bring that experience into a classroom. Years spent caring for my children — writing every word of my son’s Statement myself — do not count as “official” experience. It’s a reminder of the odd, persistent divide between parental expertise and professional structures, and of why many families still feel they are battling the Local Authority simply to secure the support their children need. It doesn’t have to be that adversarial. In many cases, the simplest route to inclusion is to acknowledge that there is no single “correct” way to learn, and that expecting children to fit one predetermined mould is where the problems begin.