Mayhem and Stardust

We are the proud parents of, amongst others, Jig, who has a handsome collection of diagnoses (ADHD, AD, FASD) which probably mean nothing and a generous smattering of fairy dust which probably counts for everything. School was a huge challenge and so we decided, probably rashly, to move to the country and home educate him. No medication, no 'support', chickens, space, a farm on the doorstep and a beach nearby. What could possibly go wrong?

Archive for the tag “ADHD”

Stories

So, Jig is in school full time again. Something indefinable and yet good has happened and it is working out. Yes we have taken some steps backwards and as each obstacle arose we deliberately chose to step back in order to plan our way around it. We brought him back home for short times, and then for longer times. He stayed home for half days and full days and we kept dipping our toes back in the water, waiting for the chill of it to subside. During this time I learned the astonishing value of this stepping back, not as a failure but as a strategy. Just because school exists and just because ordinarily kids go there pretty much all of the time that does not mean we need to or have to or will even benefit from it. Some times you need to alter the plot to fit your character. School have trusted us with this and I have learned what true partnership with teachers means. My job is to parent, to create the positive internal narrative and the small world that every child needs as their firm base and theirs is to understand when my child is ready to take a step out of that small world, to be carefully led into a wider space where the outside world can begin to add its magic to the mix. Neither will work without the other. We are working together to identify which role belongs to which of us, we are valuing the essential in each sphere and we are making progress. In order to do so we have to keep an eye on the system, the usual, the prescribed norm but we need to be brave and creative enough to deviate, to make up our own rules and to do it differently. The fact that we live in a rural area with a disinterested and complacent local authority is, as it turns out, quite a gift.

It is a gift because we can just get on with doing what we know in our hearts to be right. It is a gift because every unavoidable brush we have with the system means we have to define Jig as needy and failing in order to identify the sort of environment where he would thrive. Because we can see how it has been different we don’t need to buy into that. We can tell the difference between labelling Jig’s failures (always failure to comply and accept) in order to access resources and believing Jig to actually be that list of failures. This system does not allow us to celebrate what he can do but also to nurture him and we were in danger of wasting our time by chasing meaningless diagnoses in order to get “support”.

As we rapidly approach the transfer to secondary school we are telling two stories at the same time. One of them is the traditional tale of woe and neediness, the plot includes diagnosis and assessments and a shrinking of the opportunities open to him but it is a safe and approved narrative. The other is one of potential and hope, given the right environment and supported by brave and creative people. It is a deviation, a surprise in the plot. We don’t know how this will end.

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Dear Teacher,

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Thank you for trying to include Jig in your class and for altering every one of your behaviour policies to be fair to him, and then changing them again when that didn’t work either.  Thank you for recognising how good he is at reading, story telling, debating, researching and how much help he needs to sit in his seat, not to shout out, not to punch people who get too close and to add two simple numbers on one day and then not on the next.  Thank you for trying to hold him safe during the panic that noise or the transition between activities, rooms and spaces creates.  Thank you for understanding that his own noise is merely a defence mechanism. Thank you for trying to find a way for him to play with his peers without either him, or them, getting hurt and thank you for always being willing to take him with you on trips, even if you know you really need a back up team of experts that you simply don’t have.

Thank you for noticing that some of his worst behaviour is handed to him by others and for continuing to smile good morning to him even when he is sullen and uncooperative because you know he is really just overwhelmed.  Thank you for continuing to do your job when other support systems such as CAMHS and the LA are nowhere to be seen.  Thank you for shedding a quiet tear when I shared the earliest photos we have of him for the dreaded family tree project and for staying awake at night fearing for him, just like I do.

Thank you for trusting me to know him.  Thank you for listening to me explain things that don’t really make any sense.  Thank you for coming with us on this exploration of his mainstream potential and not flinching when we came up against the fact that we are probably on the wrong path and will need to retrace our steps.  Thank you for not making us stick to that wrong path, the path that you believe is right for almost all of the other children in your care.

Thank you for letting us cobble together a unique and probably annoying patchwork of a timetable to work towards some success while we work on a longer term solution for him even though we don’t know what that might look like, yet.

Thank you

Jiggy’s Mum

One day at a time

It is another damp and grey green day here in our Cornish hideout. It has been a while since I visited this blog, I have been busy arguing with the teams of people who self identify as professionals down here in the land that time forgot and this home education blog seemed defunct – but maybe our time in the surreal world of mainstream is coming to an end. Jiggy has been in school for a year now, gradually building up to full time attendance last September.  He is usually in trouble, often punished, respected hugely for his story telling skills, tolerated by many, given a wide berth by most. He is acutely alert, academically able, socially inept, creative, chaotic, entertaining, endearing.  He knows all of this. He is now in year 6 and theoretically due to move up to secondary school in September.  Neither school, nor the educational psychologist, nor the CAMHS psychologist, nor I hold out any hope at all for this being the right environment for him but in the absence of any health department (CAMHS) input into our Education and Health Care Plan due to inefficiency, delay, failure to stick to policy and total lack of any democratic decision making we don’t really know where he should be or what to do with him. School has been a relative success (no medication, no exclusions) for this past year and we must be proud of that but I am increasingly aware that it might just turn out to be a sort of extended field trip.  A visit to mainstream. CAMHS and Cornwall Education Dept simply don’t have the interest, ability or desire to support and I can’t change that. Having Jig at home again would have very many benefits (and yes, to us both) but those pre-pubescent and early teen years are a hormonal cocktail that creates the sort of fireworks that make me slightly nervous.  I am teetering on the edge of quietly moving back into our home ed world, where we understand the simple commandments of educating children like Jig or bracing myself for the move to a very ordinary secondary school who show no sign of being able to adapt to the needs of the Jigs in their  community. I know what works in theory and I cannot find a place that might be able to apply the theory other than home and, to an extent, the small village primary who have worked hard to learn these rules of engagement.

  1. Relationships are key.  Nothing good comes of relying on social understanding of hierarchy.  Every interaction has to be built on an understanding of each other and an earned respect.
  2. Change is your enemy. Changing classes, changing people, changing sounds will all ratchet the adrenaline of an attachment disordered child up past the point of no return in a very short time.
  3. Rules must be tested to breaking point, immediately.  Even identifying a time slot is up for challenge (think of timetables, the foundation of secondary school days, and the  myriad of possibilities for disruption before you even get to your desk!) All rules must be chosen carefully and implemented with the full agreement of your Jig.
  4. Rewards and sanctions will never work and as they are the backbone of all mainstream behaviour policies you may as well not bother.
  5. Environment is everything.  A calm space in a predictable day, with controlled sensory input makes for a child who can and probably will, learn.

The local secondary won’t be able to achieve any of that. We must now decide if that matters enough to keep him out.  The local special schools all feel just a bit too special and seem like a step too far. So, after some really pretty high level complaining, emailing, threatening and politicking, we have agreed in principle that Jig can stay at the primary school for another year if we want him to.  This is obviously a holding pattern so that I can decide what we are actually going to do.  There is no support help or advice available from the local authority and it would be pointless to pretend differently.  It would waste my time and importantly it would erode my thinking energy.  Jig says he doesn’t want any of his options and I can see exactly what he means, neither do I.

So, what to do? Maybe in this dark time of the year we should just be hunkering down and waiting for the solution to break through the clouds.  A finger of God ray of sunlight onto our damp and grey Cornish moorland. It would seem that just taking a day at a time is easiest done when you have absolutely no option.

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Responding to disidealist.wordpress.com this morning: Mediocre Failures

disidealist.wordpress.com this morning: Mediocre Failures on the impact of testing children in schools.  Actually she was particularly engaged by the notion of re-sitting SATS which seems to me to be fiddling while Rome burns.  SATS are the issue but only then the tip of the iceberg.  What we need is properly individual education with autonomous schools.

This is what I think…

I have children with similar profiles and experiences to the author of this article. There are, in fact, many thousands of families like us and we are not new. We are certainly not new to this government. We have seen governments come and go, political promises made on the back of a personal power programme of all hues and labels. I have recently become more attractive (no, sadly, not surgery) due to the introduction of the pupil premium, which gives my local school an extra £5,700 pa because we are there. Yes, it helps. Generally speaking we are overlooked because we don’t fit any particular cohort of voters and are as such of no particular use to any party. General education policies rarely apply to us, health provision does not understand us and we have little use for the rant and rage of party politics, having more than enough of our own. However, what I and many others including the author of this article have in common is that we have always had intelligent and personalised support from our schools for whom we are individuals. I have found that I am listened to and I think it is because the vast majority of teachers and head teachers would like to be able to do a good job for us. We have had really dedicated in-school support both full time one to one and more hands off, kept one child back a year (against policy) travelled (against policy) flexischooled (against policy) home educated all, some or none of our band of happy learners and we have achieved, through it all, some sort of progress towards ordinary. That, to us, is our goal. After the trauma our children have been through and the battles we have had it would be the work of a moment for us to choose not to resit a SAT (that we don’t care about and never have, ever since their introduction in the olden days when our older (marginally more easily educated) children were in school) It is just one more choice that we will need to make and not even one that we need to amass any new energy for.

I do not believe that there is any space in my life for party politicising (aka flight-feathering any politicians’ career wings) My wish would be to be left in the hands of the teachers who know their job and for them to be given the freedom to make choices on behalf of my children that may or may not suit the prescriptive homogeneity of any party policy. I would like to be trusted to know what is right or not and I do not believe that any party out there will actually back me. I will therefore vote for the one that will continue to leave me alone.

The Brotherhood

Before we went away you might remember I posted that we had thought we might try and get Jiggy into school for at least part of the week.  I really felt the need to understand his behaviour better and could not replicate the group social and academic conditions at home in order to see how he would behave if we put him back into mainstream. Also, to be honest, we had really hit a wall.  He can be incredibly uncooperative and to be successful I am sure that home education requires an element of team work, at least now and again!  I also felt that as he was getting older he would need our relationship to be simpler.  Being Mum to teenagers is about as much as either party can take I think – adding teacher in to the mix was, I felt, going to be really challenging.

Anyway, he is now doing a couple of days a week flexi schooled with very little drama. He argues with his brother of course who is also at the school but then, hey. Yes, it is early days but this first month has been surprisingly easy all things considered.  School want him in more often and I can see no real reason not to now that we have established that he can access the curriculum, should he feel like it, without medication or legions of support workers. Frankly, I could do with the break too.  I like to think that the few years at home have in some way contributed to this but I am far too old (wise?) or cynical, to start making claims like that at this early stage in the game.  He did come home last week asking what one might have to do to be expelled…

In the meantime and in order to grease the creaky wheels of any possible transition to secondary school next year we are pushing on along the ridiculously long and winding road to proper FASD support from the only specialist clinic in the country and today, 14 months into the process, we have been to clinical genetics in order to rule out any other reason for his particular and thankfully rather unusual blend of behavioural quirks.  I was expecting a bit of an in and out session (and all sorts of drama around blood testing) but was wrong on both counts.  The consultant actually knew about FAS, properly, and it only took two adults to get enough blood. Jig doesn’t look particularly FAS although his behaviour is a perfect match and that is pretty much what they confirmed today – most likely diagnosis ARND either with or leading to ADHD.  No surprises.

However, what has made me falter slightly is the fact that as we came in (as a group, this is school holidays after all) the consultant mistook Titch for the FAS child he was expecting to see…  We know – because like most parents in our position we are well read on this subject – that Titch has more of the FAS features than his big brother and he does have learning difficulties but his behaviour is just fine and so I guess we had let the reality of it fade somewhat.  Does it matter that he is so obviously FAS? Should we maybe do more, do something else, change things somehow now that we have two FAS boys and not just one?  Because Titch’s behaviour is so normal, his difficulties not social or physical but merely educational I wonder why I feel as though this is big news, but I do.

While I manage this news I must say that I did love how they reacted to the genetically correct assumption today that they weren’t brothers. They paused a minute and then both threw their heads back and laughed.  Although they know their different stories and their origins, they thought he was joking. What a team!

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Elephant steps

Since I last wrote here we have been on a wonderful and challenging extended trip to Sri Lanka.  We explored and visited, we rode elephants, saw whales, monkeys, turtles and all manner of crawling and flying beasts. We ate spicy food, rode dangerous trains, battled with enormous Indian Ocean waves and pushed through teeming markets and incomprehensible crowds. At first Jiggy was almost entirely overwhelmed and had to visibly brace himself for each new sensory experience.  Heat, scent, taste, change and challenges all contributed to his discomfort and he was very, very brave.  Only those who understand the assault that children with sensory challenges experience on a daily basis can understand the depth of that courage.  Slowly, slowly he began to relax and although he was always very clear that he preferred the Jig shaped world that we have built here he, and we, survived.  No, more than that, we passed with flying colours.

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We have come back to a decision that has required my own courage. We have begun to reintegrate Jiggy into school. Nearly three years ago we took our whirling, swirling child out of the maelstrom that was his mainstream and promptly disappeared.  That time has been very special.  We have had days that have stretched me (and him) to breaking and beyond and I have often lost sight of the goals that I set for us.  We wanted to create a space where he would learn self control, self respect, belonging, responsibility, self direction and, ideally, the odd educational achievement. I put my head down at the beginning of that process and only really lifted it when we were away this winter.  I saw how bravely Jiggy dealt with his fears and difficulties and although I cannot say that we have met all of our goals we have probably met all of them that count. I am very proud indeed of him. The child we took to Sri Lanka was not the same child that could not manage even the tiniest change, the smallest creak in routine without physical restraint. The child that could not manage sand can now play cricket on a beach…

So, two weeks into a flexi schooling arrangement and all is well. I know it is early days and that we have maintained our old life for the rest of the week but school are still greeting us both with smiles.  No-one has called us in during the day.  Jig tells me that he is only a bit disruptive.  But the big news, the really big news is that he has a birthday invitation from a child in his new class…  I can’t tell you what a massive step that is. An elephant step, you might say.

Context is Everything

It is just as well that here in the bubble of Jigginess we are used to filtering statements that come in out of the blue, free floating balloons of opinion or observation that float in and out of our conversational view without any particular rhyme or reason.  It is one of the tactics Jig uses to make sure I am actually paying attention (the truth is that I am actually practising deliberately filtering him out, making aha and hm and oh noises in a random enough pattern not to hurt his feelings but also to attempt to save what is left of my sanity) and so I am pretty good at hearing things that have no context and subconsciously filtering as I go.  However, my smooth ride of partial attention hit a couple of rocks this week and it was our increasingly verbal Titch who tripped me up.  We were doing something ordinary, maybe he was playing, maybe I was cooking and he mentioned in passing that he thought he might be Jesus.

“Sorry honey?”

“Jesus.  I think I am Jesus”

“Oh.  In what way? I mean, why do you think that?”

(shrugs)

Now we have had more than enough to do with CAMHS and all that malarkey with Jig and Titch has been reliably fine.  In the context of mental health, trauma induced over active imaginations, learning difficulties etc etc the notion that one may be Jesus is arguably significant. Luckily, Moo wandered in and caught the tail end of this.

“(insert 8 year old insult – maybe dumbhead? -in here) You mean Joseph”

The confusion is suddenly cleared and, in the context of Nativity season (and Titch’s usual slightly off kilter take on what is happening around him) all makes sense! He is often Joseph actually – it is the perfect part for non or only just verbal children with big smiles. He is certainly not the sort of seven year old who would be doing anything other than something legitimate when asked later that day “what are you doing (on the computer) Titch?”

“Buying a girl”

Context is everything.

Up days and down days

We have had a wonderful few weeks – Jiggy’s big sister got married from home last weekend and the day was perfect. He rose to the occasion with elegance, empathy and enthusiasm – and how many other 9 year olds could you say that about?!  He also looked devastatingly gorgeous (which always helps!)

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The days since the wedding have been oddly quiet.  We have nothing to organise or prepare for and today we were just exhausted.  Jig isn’t particularly well and I was bone tired.  Since my self questioning in the summer I am working on being  kinder to myself and trusting the ebb and flow of Jig’s days and natural intelligence and so today we simply walked on a practically deserted beach near us in beautiful North Cornwall.   We had the sort of unusual conversation that we often have (Fibonacci and cockroaches today) and I just know that he learned more in the five minutes of that chat than he would have anywhere else.  What I need to celebrate is the fact that I did too. I am learning, slowly, that my role as a learner is just as important as my role as his teacher. Yes, I want him to know maths and facts but I also want him to learn how to be kind to himself and to make the best of the down days alongside the exhilaration of those high days and holidays too. I know more about numbers and bugs this evening than I did but I also put a new theory into practice and it worked.

I think we nailed it. Yay.

Finding friends

Jiggy says he wants to go to school.  He has said that, occasionally, ever since he left but he has also said quite a lot of other things….!  Just because it makes ME nervous isn’t a good enough reason to attach too much importance to it I guess but I am and so it matters.  I don’t think he does actually want to go to school, he knows as well as I do that the challenge of sitting in a group that isn’t about him for longer than four or five minutes (which is real progress by the way) would overwhelm him fairly early on. However I do think he wants more friends. We have no neighbours, Home ed group only meet once a fortnight, Forest school didn’t work out as we had hoped and his week is, although pretty wide-ranging and undoubtedly useful, mostly a solitary affair. That said we play in the park after school most days, he has managed a street dance class once a week for two or three weeks now without any issue, he has siblings close in age (with whom he plays pretty well all things considered) and we take any opportunity that arises to mix with other kids.

But then again, that doesn’t always work out well either.  We went to France a couple of weeks ago on an off season Eurocamp bargain. Jiggy practically stalked any child that looked like a possible mate and it wasn’t long before I saw a couple of them hiding when he came looking.  I was sad to see it but I completely understand how they felt.  Even Jig seemed to notice that they actually didn’t want to play and although confused by it he wasn’t unduly upset.  Instead he set off happily for the organised ‘fun’ session.  There were about eight in the group and it went well enough, I gather, for the first part but then there was lining up, group games, a few rules and boundaries and it disintegrated.  You know things haven’t gone well when you come to collect your child and the cheery camp fun leader won’t meet your eye. I guess she was annoyed that I hadn’t warned her.  Sometimes though I like to give Jig the benefit of the doubt and a clean sheet to start with (especially when we are far away and never going to have to see them again…) and, to be honest, sometimes I just get fed up explaining.

In a perfect world we would find a small group that met every day that did the sort of wonderful practical things that Peter and Jig do, that could take the time to really know him, that could stretch and support him at the same time and that could offer him the sense of community that he is lacking.  Lets just hope.

Midsummer Fairy Ballroom

Midsummer Fairy Ballroom

 

 

 

 

Clean Screen

Well, the blip has faded.  We had a brief meeting with CAMHS who then sent me a thanks but no thanks letter and referred us back to the GP who had tried to shuffle us off to them in the first place.  I had wanted a referral to the FAS clinic in Surrey, really just to know what sort of tangle we were dealing with.  I find now that I need more determination to push through and am surprisingly, for such a cynic when it comes to “support”, disillusioned by the fact that the only thing CAMHS wanted to do really, within two minutes (which might be a record) was to re-medicate.  That’s a no so here we are again, sailing along in a clear blue sea with no visible points of reference but no obstacles either. It could be worse.

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