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 “SEN”

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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Jumping off the path

I write here about Jiggy.  Of my six children he is the one that I have been so totally responsible for and he is the one who is now so entirely under the radar that I feel the need to speak publicly about him, to hold our stories out as proof that we are doing what we can and that we are being careful with him.  I don’t want the sort of ‘support’ that leaves us feeling smaller and weaker, less able to raise him, less able to understand him the way we do.  However, being off grid is a scary place.  It is quite isolated out here. I occasionally consider pointing out to the local authority that they really should be keeping an eye on us but then I picture hordes of grey suits bearing down on our colourful and chaotic little world and shudder.

That said, Jiggy isn’t the only one who would benefit from some time in this bubble of ours.  Moo has had nearly four years of education and still can’t do simple number bonds to 5. She has been on School Action for some time and the academic gap between her and her peers does nothing but widen. Many children exposed to drugs and alcohol in utero need to go over and over a thing before it sticks and school just don’t have the time. I think I probably spend about thirty hours for each hour that school has to bank simple basic building blocks such as money, time, number bonds and times tables. She loves school though and gets much more socially out of it than Jig ever could, or did. So, with her blessing, I am considering suggesting a flexi school arrangement for her, to scoop her out of the race she is so clearly losing, to move the goal posts and to make a new Moo shaped space for her in this quirky world that is our day.

It is IEP week this week, perfect timing.

 

April 29th

IEPs are all about writing a to do list that doesn’t actually impact anyone nor does it require any actual resources or input from anyone that is out of the ordinary run of things. I am happy to play those silly games when I need to – which is when I am letting my children settle, giving them time, waiting to see what will happen.  However, those times end.  I don’t expect anyone to know that I have changed my tack, or that I am now going to start requiring actual action rather than virtual action and it may be unfair of me, now, to be demanding that learning deficits be addressed by the application of some sort of actual teaching when I didn’t before.  But then life isn’t fair and they have had a good ride thus far.  If the SENCO doesn’t have a plan for me by Wednesday 3.30 then Moo will be home with us one day a week on a maths workshop day pending their further communication to me regarding a real individual education plan – with actual teaching.  No doubt I am not as good as the teachers, no doubt they could do a much better job, no doubt there have been umpteen training days and policy wallah meetings about how best to teach her but, in the end, no one seems to be actually doing it.  Better me than no-one. Flexi schooling has never been a first choice and, if I were a different, braver, calmer woman I would have had her at home full time anyway but I’m not.  This may well be a good enough compromise.

Nervous Anarchy

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Being off radar for over a year now I felt the need to remind myself how far we have come without ‘ support’ and although we are still, of course, made painfully aware of the difficulties Jig faces we also have a sense of autonomy which helps us to feel much less disabled. Being mainstream was incredibly costly and we spiralled further and further into needing more and more. It was a revelation to think that we could simply stop.

Since he was born Jiggy has had; neonatal intensive care team, several children’s social worker teams in two states and two countries, a lawyer, a children’s advocate, specialist paediatrician (USA ) early years intervention psychologists, full time one to one school support team, behavioural intervention team, educational psychologist, behavioural psychologist, specialist paediatrician (UK) and various casual carers and support workers. He was medicated at birth to ease withdrawal and prevent fitting and then again from 4 years to facilitate his inclusion in mainstream.

Now that we have stepped out of mainstream there is just us and an environment that suits him. I am, of course, often scared that we are being dangerously naive to think that this will be enough and I worry that we are somehow doing it wrong. However, just as often I am sure that we had no option and that this approach just needs a little faith, a deep breath and just a touch of anarchy.

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