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?

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!

IMG_4469

Advertisements

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.

IMG_5247 IMG_5213IMG_5458

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.

Movember

IMG_5033

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.

The wrong words to the wrong tune

IMG_4922

Today, as the Court of Appeal hear the facts about another FAS child, the realities of her day to day strengths and weaknesses and the impact that foetal exposure to probably large amounts of alcohol has had on her we begin another ordinary day here. Jiggy too has the ‘facial deformity’ that I heard described on the radio this morning (I prefer to think of it as rather a cute, elfin look that makes him look appealing even when he quite frankly isn’t being) He too has the learning difficulties that mean we can’t be in school, or scouts, or any other organised group. He shares the same outlook as the girl in the county somewhere in the North West has, that so many children, many adopted, also share, with or without that rather elusive and politically inflammatory FAS diagnosis.

I hope that Neil Sugarman’s case wins today. I hope that, on this particular battle ground, the needs of the foetally damaged child can be heard over the clamour raised by calls for the rights of the adult or the clattering of fears over the cost of reparation. I hope so because it is about time and because we have to start somewhere. I do however regret that we have had to use this particular battle ground, I regret that the lines of engagement are such that we need to use vocabulary around criminality. I know that there are very few other ways for us to raise issues and to be taken seriously and that, frankly, is the fault of a system that is the child of a long line of male dominated decisions with limited and simplistic views on the complexities of being female in a male world. I hope that one day we can find a way to raise these essentially female issues in a way that widens our understanding of the actions of all women.

The birth mother of an FAS child is not a criminal because she drank. She is very likely to be in a dark and lonely place of her own and in my experience working with birth mothers who lose children she is facing a trauma that I don’t have words to describe to you. The social worker who carries that child away and places her in a system that she knows is not good enough represents the next phase in our failure to nurture that child. The chain of foster carers who inadvertently weaken the child’s ability to love or be loved with each successive change and the adoptive mother who hopes that loving the child will be enough and then finds out that it simply isn’t. All of these women know about FAS and none of them have had any say in the formulation of the rules that will be applied today by a system made clumsy through lack of tools and understanding.

In the meantime I am a lone woman, with a damaged child, in a small and quiet corner of the country with no expectation of any sort of recognition of the issues that we face on an hourly, weekly and life time basis. I am glad that FAS is in the news today and I hope that the oddly quiet voice of the many thousands of children suffering real and actual damage is heard over the raucous barracking of the voices of adults claiming that a nebulous and ill thought through ‘right’ risks a slight denting. More than all of that I wish that we could start to talk in a meaningful and useful way about the impact of drugs and alcohol on unborn children.

It’s not you, it’s me.

IMG_5004

Being special is all very well but we are struggling slightly with finding ourselves a tribe at the moment.  We don’t quite fit into any of the groups available to us, at least not fully, and I am thinking about why that might be, if it matters, why it matters and what I could do differently.  I know that the slight disharmony is a clear and accurate reflection of Jiggy’s own unique approach to his days and am happy to acknowledge that on his behalf (sorry Jig) but it does raise so many more questions, much harder ones, ones about me, my days, my choices and how my approach to our life impacts us and the people around us.  Maybe I am the one with the special and different needs after all, maybe his way of living is just as good as anything I could come up with and I should stop trying to make that any different. Or, maybe I have spent too long in Jiggy’s world, I am beginning to lose the clear edges that I always thought I had marked out which is, frankly, a little discomfiting. Maybe they were all rubbish anyway and we are about to stumble (or fly, or crawl, or swim – whatever we are) upon a new and better way or maybe I am, quietly, losing the plot.

Holding Moo and Titch

Sometime back in the Spring I wrote about Moo and Titch and how they were “behind” at school.  They are, of course, only “behind” because school are measuring things that they can’t do, yet.  If they were measured according to that things they can do, like survive early trauma, recover from parental addiction, show phenomenal resilience and perseverance in the turning of the tanker that is the shift from fear to trust then, to be honest, they would have won awards.  But they aren’t.  Not in school anyway.   I wrote about going in to school and banging about a bit. School responded well and we now trust each other. Titch wasn’t even slightly ready for the leap from year 2 to year 3 so we are staging it.  Year 2 in the morning, year 3 in the afternoon. He is stretched but not breaking.  He can’t see why he can’t stay in year 2 until its time to “do college” but does, now, two months in to the term, agree that there are a few, a very few, good and exciting things that happen in year 3.  I am loving how school have let us hold this little boy tightly enough, for long enough, for him to be able to just put a brave toe in to the undeniably chilly waters of ‘moving on’.

Moo, now 8, is such a wonderful mix of paper thin vulnerability and steely determination.  She is as tough as old boots and crumbles like cake within seconds of each.  She isn’t great academically but, with a nudge (actually, quite a big shove) school have ‘seen’ her.  They know her now which means that they can communicate.  They have listened to me, and then to her and they have come up with a few different ways of trying to reach her and, frankly, succeeded.  She has additional help but also additional responsibilities.  She is praised for things that she wants to succeed at.  She is smiled at, for no reason.  She feels held.

I read, on braveheart education’s blog, about witnessing each others lives and this is it, exactly. There is nothing more I need for them, for now, and I am feeling good.

_DSC5736

Baby Moo and I, starting out (and both looking younger…)

Fruitful days

IMG_4943     IMG_4944

We have picked fruit this week for jams and jellies and a delicious (me) revolting (Jiggy) syrup for tickly throats from Elderberry and clove.  It covered science for several days and made the house smell very mellow and autumnal.  We have had interesting visitors who remember our old house from years ago – tick that living history box. We have found the Khan Academy (www.khanacademy.org) which has reinvigorated maths, poetry day which encouraged Jig to hide rude words in seemingly innocuous lists to make acrostics and BBC i-wonder which saves my bacon day after day when I don’t know what we are going to do next.  A new art club has led to marbling and patchwork and an old home ed club has cemented friendships and social opportunity.

We followed a child, not dissimilar to Jig, around Tesco the other day.  He was in uniform, had two helpers and was obviously on a ‘life skills’ lesson.  I idly wondered how much the hour they spent in there had cost and hoped that the exercise had by some miracle coincided with a period of receptivity that means it would have been worth the considerable effort both women were putting into the buying of bread and milk. I have to say that it looked rather like sowing seeds on stony ground.  Jig and I are lucky, really lucky, that we don’t have to do all that now.  We can simply live our days and harvest the fruits that are right there, under our feet.

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!)

Wedding_0551

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.

PUP

A friend of mine calls what I have just had as “Periodic Unschoolers Panic Disorder”. It could just as easily be called PAP (adoptive parents will know where I am going with this) The symptoms are; a sickening lurch in the pit of your stomach when you think about the responsibility you have shouldered pretty much alone, unreasonable outbursts in response to fairly ordinary childhood issues due almost entirely to an over investment in another persons every waking thought, word and deed, a sudden and uncharacteristic addiction to anything screen based that will buy you just one more minute of quiet and a financial investment in parenting and education advice resources that would otherwise fund a small county.

The treatments for PUP disorder include; allowing yourself to seriously consider putting your child back into school without allowing any sense of failure or loss, listening to friends with differing opinions, disregarding most of the advice you just bought making no decision at all until you feel as though your feet are on more solid ground and taking a few moments every day to look into your children’s eyes, properly, in the way that you last did when you were feeding them.  Turning an eyeball to eyeball conflict into an honest look into each others eyes is a new trick for us.  I recommend it.

I am not yet out of the woods with this disorder but am certainly off life support.  We have home ed plans for September at least and, for now, have planned no further.

_DSC1007

 

 

Post Navigation