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 “FAS”

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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Movember

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The wrong words to the wrong tune

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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.

Autumn Days

Now that we are in our second autumn I am struck by how  our routine, such as it is, has developed around integrating learning into daily activities and seeking out calm.  Autumn comes on so noticeably it almost requires a change of tempo and as the season changes our days are settling into a nice rhythm.  As part of ‘Operation Oscar’ (where we attempt to do what we should have done 6 months ago and train our huge puppy) we are walking more.  Oscar, Jiggy and I take the younger children to school and park the car in the village.  We then trek back down the ancient footpath over the bridge and up the other side of the river.  Oscar eats the blackberries, chases squirrels and learns to walk on a lead without dragging me over and Jig and I stomp along in the mud and play spelling and times table games (with guess the animal, at which he is expert, as a reward) I am determined to make this a whatever-the-weather part of our day and have been waxing and waterproofing our coats and hats accordingly. It makes us feel wonderfully virtuous and by the time we get back we are ready for second breakfast.  Home days are then made up of comprehension, reading voraciously, writing (what a struggle that is) learning to touch type (because of the writing issue) and increasingly, art work.  We really don’t do enough of that, mostly because Jig hates it.  I am well aware that it would be a great help for his writing skills and so our autumn days are going to be messy ones.  There is such a temptation to skirt around the things that create conflict and I am as guilty as the next pacifist- luckily we only have two home days or we’d get nothing done! We then tromp back to the car and fetch the others at the end of their school day.

In addition, we have a Peter day when our wonderfully calm and creative helper comes in to save my sanity and give Jiggy a break from me, we have a home ed group day where we go on trips and play and we have a Forest School day where he is learning to manage group activities.  With some success.  Sometimes.

Our new activity, mini rugby, is not proving easy for him but he can tackle fearlessly and is little enough to be nippy. He isn’t a popular member of the team, due to his inability to throw and catch I guess, but things have only come to blows once. I think we will bank that as a partial success. The others love it so Jig will just have to fit in around them on this occasion.

We have moved our school room downstairs where it is warmer and as the house fills with plasterers, plumbers and builders over the next few weeks we will work on making sure that we know how to find calm in the rhythm of our autumn days whatever is going on around us and that, it turns out, is what this is all about.

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