Monday, 20 December 2010

Wednesday, 8 December 2010

To the Tune of "Twelve Days of Christmas"

On the First day of Christmas my family gave to me.... Dr Who on the TV
On the Second Day of Christmas my family gave to me... Two bags of Cranberry and Dr Who on the TV.
On the Third Day of Christmas my family gave to me... Three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the Fourth Day of Christmas my family gave to me...Four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the fifth day of Christmas my family gave to me... Five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the sixth day of Christmas my family gave to me...Sixth (litter)box of cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the seventh day of Christmas my family gave to me... Seven hours of sleep, sixth box with cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the eighth day of Christmas my family gave to me...Eight loads of washing, seven hours sleep, sixth box with cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the ninth day of Christmas my family gave to me... Nine different medicines, eight loads of washing, seven hours sleep, sixth box with cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the tenth day of Christmas my family gave to me...Ten O’Clock and counting, nine different medicines, eight loads of washing, seven hours sleep, sixth box with cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the eleventh day of Christmas my family gave to me...Eleven miaows of hunger, ten o’clock and counting, nine different medicines, eight loads of washing, seven hours sleep, sixth box with cat pee, five massive tantrums, four homework projects,  three Christmas shows, two bags of Cranberry and Dr Who on the TV.
On the twelfth day of Christmas my family gave to me...A full case of wine! eleven miaows of hunger, ten o’clock and counting, nine different medicines, eight loads of washing, seven loads of washing, sixth box with cat pee, five massive tantrums, four finished projects,  three Christmas shows, empty bags of Cranberry and Dr Who on the TV.... With a large G & T!!

Tuesday, 7 December 2010

To cheer up an exhausted and stroppy four year old!

I have this little girl
She really is so pretty
I tried to choose the perfect name,
And so I called her “Kitty”.
She has the very best of smiles
The kind you want to see
And so I want to cheer her up
To make her smile for me.
I love her when she’s cross
I love her when she’s sad
I love her each and every day 
But I would rather see her glad!
But really it’s that smile I miss
Which brightens up her face
So help me cheer her up today
Because Kitty is just ACE!

Friday, 5 November 2010

Sorry for going MIA

As you can imagine, moving a family of size is quite a challenge and very often the physical act of "moving" is only the tip of the iceberg. R likes to quote his favourite "80:20" rule, where 80% of the work takes 20% of the time and the remaining 20% the remaining 80% of the time! I have come to realise (yet again!) how apt this is.

We were all unpacked and ostensibly settled within a week, but the slow process of establishing local health, education and social links is taking a while. Having all four children under various consultants is a nightmare to say the least and unfortunately the most conveniently located GP practice has proved to be possibly the least sympathetic and helpful in the town! They have lost clinic letters, made errors on repeat prescription and "accidentally" sent referral letters to the wrong places.... I knew it wasn't going to be easy but establishing adequate local healthcare has been as arduous as wading through waist-high treacle in a snowsuit. I think.

I've always tried to write about topical subjects, or at least topics in which I am interested in or can relate to, and this is partially the reason for a lack of posts in recent months. Having neither the time to "think" outside the family box has prohibited any ponderings beyond the essential and urgent! I've also felt rather lost and uneasy because although we have struggled with the twins' medical issues since birth, the reflux everyone has in the family and H's issues I did at least think I understood them. Maybe not where we were going but at least where we came from and where we are now! However, we now have a diagnosis, which makes an earth shattering amount of sense and would seem to be the missing and most elusive piece of the complex jigsaw which is our family. I should be jumping for joy you may think, and indeed I would like to shout from the rooftops that I am NOT a neurotic mother and there is a very real disease affecting our family with which we have to cope day in, day out. However there is no cure, it isn't going to go away and there is no no hope of a magic wand.

The twins have been diagnosed with EGID - Eosinophilic Gastro-Intestinal Disease. It is an autoimmune allergic response which leaves the gut damaged by white blood cells called eosinophils which attack it. The only ways of treating it are by strict dietary restrictions (so now we are off dairy soya AND wheat again...) and anti allergy meds, and maybe steroids. (No we are NOT going there...) We have such a strong family history of allergies, gastrointestinal problems and autoimmune disease it shouldn't be a surprise. I have suffered mildly all my life with gastro problems and more so with allergies, reflux as an adult and have autoimmune thyroid disease so I should be well informed, strong and understanding enough to deal with this. But I take a little white pill to artificially do what my self-destroyed thyroid cannot, there is no such "fix" for EGID.  In older children it presents as further gastro issues but also with joint pain and problems, and hypermobility and hypermobile joints too - all four children are now under Podiatry and we are hoping it will help J's back pain too.

We are lucky, it's rare and many with it are totally enterally (tube) fed since they are allergic to all foods and my kids are essentially fit and well. However, the reflux goes from bad to worse, the bloating, the constipation - it doesn't go away. Imagine it being the highlight of the WEEK if your child successfully empties his bowels? Or you sleep right through because no one wakes choking on reflux, or sweats so much they need their sheets changing?

Right now I'm feeling a little adrift... relieved, yet bereaved that virtually all hope of the elusive magic wand has now gone. If I'm honest I'm angry too, I didn't "sign up" for this and neither did the children. I'm in denial at times too, it comes in waves! I'm turning the anger, frustration, sadness and denial into some positive energy and am now helping found a Parent Network for families with gastrointestinal disease with GOSH. Extremely worthwhile and a good distraction too.

FABED - Families affected by Eosinophilic Disorders a fantastic site with a discussion forum. useful inof if anyone is interested in finding out more!

Friday, 1 October 2010

SEN - the educational rollercoaster

Several friends have asked me recently for advice/information on forging a path through the maze that is Special Educational Needs to obtain even adequate support for their child. On our journey to finally obtain such support I have learned a huge amount, most of it through experience rather than research. The inaccessibility of SEN policy and practice in individual schools and at County level continues to astound me. I've experienced schools with their pupils best interests at heart struggling to make themselves heard by their County SEN Officers (assuming they actually HAVE one and the post incumbent hasn't gone on maternity leave with the post left unfilled in the interim) and those for whom the official requirements of SEN best practice appear to be an unpleasant hindrance should they find the time to address them.

Who in their wisdom assumed mainstream schools were the best places for virtually all special needs? Closed the schools, units and support teams dedicated to supporting those for whom mainstream education is at best a patchwork of second and third best options and at worst a living nightmare? It wouldn't be so bad if the funding had been diverted to provide for such children.

Schools today are charged with meeting their pupil's educational AND emotional needs (Education Act 1996) which is a key point. It (and the SEN Code of Practice) also set out the requirement to monitor progress (as before) and ensure those with additional needs were adequately supported. "A child has a SEN if he/she has a significantly greater difficulty in learning than the majority of other children or has a disability that prevents or hinders him/her making use of mainstream facilities." This means the government has a legal responsibility to meet social and emotional needs as well as educational ones. It is now against the Law to discriminate against disabled pupils in admissions, access to the curriculum, school trips, after school clubs and anywhere on the school premises. (The Disability Descrimination Act 1995 also supports this.)

It's all too easy for your Autistic son, daughter with ADHD, wheelchair using pre-schooler etc to be advised the after school multisport club is not an option because of x, y z (insert preferred excuse) but schools are simply not allowed to do this. It may seem totally reasonable that the very young and inexperienced football coach cannot cope with a child with Asperger's and ADHD but that ISN'T your child's problem. you might completely understand why your autistic child in Reception might not cope with the proposed excursion but that is a problem for the school to solve. If your child is in mainstream education then it IS the school's responsibility - rightly or wrongly.

A child deemed to be struggling in school should be assessed (as all children are constantly in school) and if not making progress (academically, socially, emotionally, physically etc) then they should have a termly IEP or Individual Education Plan. This should be related and explained to parents at termly IEP meetings and this should be in ADDITION to the usual parent-teacher meetings. Clear goals should be set out and if unmet or not even partially met after two terms then consideration needs to be made to step up the support. It is essential that you attend these meetings and keep copies of all IEP documents to refer to later.

The Code of Practice for Special Educational Needs recommends a graduated approach to intervention and support. They are as follows:-
1) School Action - where support is 100% school based, with termly IEP meetings and clear targets for progress.
2) School Action Plus - where outside agencies are involved. this might be speech and language therapy, intense   physio, enteral feeding, ADHD medication under a psychiatrist.
3) Statement of Special Educational Needs

School Action is the initial stage of concern but even at this level the school should liase with the educational psychologist for advice where appropriate. In our experience schools do not always have a good relationship with their Ed Psych's and often feel they have somehow "failed" when they have to call the Ed Psych in - as if they couldn't "fix" the problem in school. It's important to focus on the child's needs and keep referring to IEPs, reports and meeting logs to avoid being swayed! Ed Psychs are difficult to pin down, overworked and probably underpaid they cover huge areas and you may well be told in retrospect your child has been seen by yours. I really recommend writing to yours (County Education Website should provide addresses etc) and requesting you are notified of an impending visit and say you would like to have the opportunity to discuss your child with them on that date too. Too many school's fail to consult the Ed Psych until School Action Plus is getting your child nowhere, and a Statutory Assessment begins to look likely.

A Statutory Assessment is a detailed investigation of your child's special educational needs and what provision is needed to meet those needs. It is not a step many councils take lightly! you can request one yourself (sample letter here)  but you will most likely get turned down first time. Don't be put off, our school refused to back us initially, we appealed, referring carefully to Educational law and Best Practice. In H's case he was being excluded several times a WEEK by age 6... clearly not therefore having "full access to the Curriculum" and it was this assertion which won us an Assessment. Don't even mention the word "Statement" as everyone immediately looks the other way and starts singing "Tra-la-la!!!" very loudly! Statements cost around £5K to complete, they are legally binding documents - small wonder few councils jump at the chance to initiate then.

A Statutory Assessment doesn't always lead to a Statement, and again you can appeal (don't be afraid to do so) and if you have requested it yourself DO take advice. Agencies like IPSEA are a mine of information. USE them!  Even if you do actually secure a Statement sadly the battle doesn't stop there.

Only today, I was discussing this with H's psychiatrist. (Whom he has to see for ADHD support/medication) The SEN system is so flawed.... children struggle to extreme levels, many spend months out of school, most finally get support, but as soon as this support works, the Council remove it because it's too costly and your child is coping better! Our son finally has the 1:1 support his Statement and Dr say he must have, and it works. 100%. total transformation in school..... but his Annual Statement Review is due and we are terrified the current level of support will now be reduced, precisely because it is working. Eighteen months ago we were on the brink of permanent exclusion - a step extremely difficult to reverse as a friend's son has found. He spent a year out of school, and is finally in an appropriate setting. but guess what? He's doing better, his place at that Special School costs the County a fortune so now he's doing so well they want him back in mainstream!!!

Honestly, it beggars belief. How we can condemn these children to an educational lifetime on a rollercoaster like this? I'm dreading the next dip.... because it isn't ok to be seen to be doing well, that suggests there are resources to be saved somewhere. For the time being though, having fought for 5 years to see our son better supported in school we have reached that point - where he is happy, he is in school, learning and is slowly making friends. He is welcome in ALL clubs, invited on trips and is just one of many. Bliss. Long may it ast, but sadly I don't hold much hope of that!

Thursday, 30 September 2010

The genetics of ADHD - my views on the study debated today

 I have listened to this debate all day and quite frankly am totally mystified as to how two so called "experts" feel mudslinging is going to assist in the worthwhile investigation into the causes of ADHD. Jeremy Vine on BBC2 was in his element egging on the Ritalin-bashing extremists, allowing clinical psychologist Oliver James free rein to get on his soap box - which he leapt on and duly blamed all parents of children with ADHD as being dysfunctional with poor parenting skills.

Frankly I take offence at that and invite Oliver James to come and visit our family and a few others I know who are equally furious at his assertions. 

So what is all the fuss about? Well, apparently the "first direct evidence of a genetic link to attention-deficit hyperactivity disorder has been found, a study says." Scientists from Cardiff University, writing in The Lancet, said the disorder was a brain problem like autism - not due to bad parenting. They analysed stretches of DNA from 366 children who had been diagnosed with the disorder.But other experts argued ADHD was caused by a mixture of genetic and environmental factors. (Oliver James the most vehement critic.)

Unfortunately, the PR team given the task of publicising said study took a leaf out of Alistair Campbell's book and produced a report the King of Spin himself would have been proud of, neglecting to focus on the key point the research did demonstrate. Whilst there are bound to be crossovers with so many other co-morbid conditions the fact remains that a genetic link appears to be there, at least in some children with ADHD. Given that there are also several types of ADHD (ask my son, he'll list them for you) I do think this is significant, and it's a start. Not an end point and yes there are flaws but a valuable contribution to ADHD research. I don't think anyone is saying ADHD is only ever genetically caused but let's give the study credit where due and give parents a break.

Any parent with a child with an ADHD diagnosis, particularly if they have other non-ADHD children, is likely to tell you it is a combination of nurture and nature. To my mind there is absolutely no doubting the genetic link, ADHD runs in multi-class, fully functional families I know and pursuing accusations of bad parenting do an incredible disservice to the hard work of bringing up a child with ADHD. Imagine a child waking screaming and shouting every morning at 6am, threatening siblings, running away, self-harming, and frequently excluded from school - the parent of that child has to work 24/7 parenting and protecting the rest of the family in extreme circumstances. Apportioning blame is disrespectful and insulting. If you haven't been there you have NO idea.

Oh, and my other three exhibit no such behaviours, all parented the same way, and actually the child with ADHD had the calmest pregnancy of the lot. Without Ritalin he would have been permanently excluded by the age of 6 and would be uncontrollable. More importantly he LIKES taking it as he can concentrate, learn at school and feels better about himself as a result. He is happy, manageable and has friends. No parent likes giving their child medication and in all cases you have to weigh up the pros and cons but persisting in stigmatising children with ADHD and their families helps no-one. Time to stop Ritalin-bashing, support parents and fund decent research.

Wednesday, 25 August 2010

Indigo Children - a reality or ASD/ADHD or just bad parenting?!

This post is on a subject I have recently given considerable thought to.

I've struggled with son number 2 for most of his 8 years. He does have a variety of diagnoses to his name including Autism and ADHD and I invariably notice similar traits all too easily in others, and in my other children also. That is not to say any of the other three would deserve similar diagnoses but since the Autism Spectrum is just that - a spectrum -  many of us share some of the aspects which combine to warrant a full blown diagnosis in those more profoundly affected.

What I also notice in my younger two in particular is how sensitive, aware and opinionated they are. They are old for their years in so many ways, bright and able yet certainly less socially adept than my eldest was at 4. They are intuitive and impatient with those less so, have their own agenda and can be alarmingly vocal about it. This is not an immaturity  typical of a child two years younger, exhibiting tantrums borne of communication difficulties. And unlike the child on the Autism Spectrum, who shares many characteristics with the so called "Indigo Children" my twins can tell you exactly what they need and want, communicate their feelings in great detail and are acutely aware of others' feelings also. They are far more self assured than I was at their age for sure, yet I have parented them in the same way as their older siblings!

I read The Indigo Children recently having been kindly sent a copy. To be perfectly honest, I'm more a science-based kind of girl, preferring Dawkins and Schrodinger to crystals and New Age theories. I prefer to view the world in all its complexity through the concepts of science rather and have absolutely no time for auras, the paranormal or synesthesia  which is how Wikipedia prefers to classify the Indigo concept. But the books I have read on Indigo Children are slightly unsettling - because the certainly do describe familiar traits which I see in my children. 

Many children labelled indigo by their parents are diagnosed with attention-deficit hyperactivity disorder (ADHD) and Tober and Carroll's book The Indigo Children linked the concept with diagnosis of ADHD. Their book makes the case that the children are a new stage of evolution rather than children with a medical diagnosis, and that they require special treatment rather than medications. This I can understand, some prefer to consider a "problem" as a desirable variant of "normal" . Certainly the number of children receiving a diagnosis of ADHD and/or Autism is on the increase and discussion of this generally accepted fact is frequently in the news and professionals are keen to determine whether this is better recognition of both conditions or an increase in their manifestation/occurrence which would be somewhat disturbing. Advocates of the concept of the "Indigo" child would respond that this is due to a surge of "old souls" (old before their time - self assured, confident, opinionated, not reincarnated) born since the 1970s who are misunderstood and misdiagnosed.

But I don't see ADHD in my younger two, some ASD traits yes but none more than your average 4 year old with a brother on the spectrum and I really don't feel comfortable with the "Indigo" label. Which leaves little else other than parenting style. As an historian with a keen interest in social history and in particular the social history of children I know the place of children in society has been revolutionised. From the early modern idea of children as essential, unavoidable and lower status providers to the family economy to the Victorian opinion that well-off children should be "seen and not heard" and poorer children were an economic resource or an inconvenience the lot of the child in history has - on the whole - been secondary to that of their parents and other adults. Many children never saw their first birthday, let alone their fifth and whilst loved and cherished by their mothers rarely attracted the fawning over we see today.

I see it everywhere, through the advertising of children's toys and luxuries, the play schemes and activities and in the attitude of many parents who live their lives through and for their children. I'm as guilty as the next in becoming caught up in the desire to give my children a good start, hoping for if not the best certainly a desirable close second in the many choices we make for them. I've resisted the rooms full of toys though, the luxury parties and excessive wardrobes of clothes but my four don't do badly! But I do expect respect and good behaviour from them and will not tolerate demands and tantrums. Yet despite our attitude at home the rapid elevation in society of children to a status far above that of their parents (at times) is infectious and has to have contributed in some way to the behaviour issues so many of us see so often today. The way we are encouraged to leap on every little issue, meet every single need at every level and don't even get me started on the concept of "safeguarding" which has legitimised society-wide interference which further devalues parents. 

The pendulum seems to have swung too far the other way, precipitating a child-dominant culture which has nurtured and encouraged the Indigo type. I actually think the Indigo personality is a reality (I suspect I have two borderline Indigos here!) but I honestly believe this is a product of the social changes we have seen since our economic circumstances have enabled a radical remodelling of our children's role in society. Parents have been under fire for too long, for ignoring their child's needs at their own expense when a little balance would satisfy everyone's basic needs. Indigos are only here to stay if we perpetuate the necessary environment for them to flourish in. There is a HUGE difference between a smart, opinionated kid with an advanced awareness of their place in society and a child with ADHD and/or ASD and confusing the two does a huge disservice to the latter group. Indigos are a product of the social changes in recent decades in my opinion and different (rather than bad (or good)) parenting and a clear reminder of the direction we find the world heading in.

Tuesday, 17 August 2010

Social Networking & Facebook v Twitter?

My eldest son recently joined the ranks of Facebook users and has alarmed us with the speed in which he became addicted to it. This was in fact a completely harmless addiction to the application "Farmville" (rather than the immediate embracing of virtual human interaction to our great relie) but nonetheless got me thinking.

I have used Facebook for years- before that I frequented a couple of parenting forums which I still occasionally use now. Before our second child was born Ihad barely discovered the internet but post-natal depression, a complicated baby and a move to a new area left me isolated and lonely. I craved interaction of any kind but had little confidence to break in to the local parenting circuits.
Even once better integrated I felt drawn to online communication, a "fast-food" and "safe" alternative to making the effort to go out and socialize. Somehow with less on offer ( no visibility for a start, make-up, clothes etc don't matter online!) there was less to lose but surprisingly a lot to gain. Over the past 8 years I have made many online friends, several of whom I have gone on to meet up with, some on a regular basis. I found the opportunity to gradually get to know others in this way helped me meet people I have a lot in common with but whom I might never have met in real life.

Of course online forums facilitate the meeting of like minds- and in my case provided me with much-needed support when dealing with severe reflux with our twins. So valuable have I found such sites that I went on to support others myself. One site in particular has achieved what a non-virtual organization could not- worldwide membership, sponsorship and funding through rapid promotion and campaigning. The power of social networking online is phenomenal. My friend and her s Facebook campaign at Christmas got "Rage at the Machine" to No.1 and raised £100 000 for Shelter.

But back to the question posed in the title. Facebook or Twitter? For me, the former held great appeal as a "one stop shop" online. Keep up with everyone in one place. Quickly. An even quicker fix for socializing..... and yet that is precisely the problem. We don" t all live in one big community where everyone knows one another. Our daily lives involve many groups of people, some overlap, but even when they do it is likely to be in the manner of a Venn Diagram rather an a complete overlay. We rarely say te same things, share the same information, same mannerisms etc with everyone we know. A status update on Facebook though, unless you take time and effort to change preferences, each time will go to everyone on your friend list every time. And that's not all. The popularity and ubiquitous nature of Facebook in youth culture is redefining not only the WAY our children interact but WHOM they interact with. Children as young as 8 are using Facebook and I wonder how many parents realize that through "friends of friends" their children have a window into the world of much, much older children- and adults. We try and protect out children from so much and yet it is all so "innocently" available online.

For me, Facebook has become too intrusive, too open, too all-encompassing. It's a fantastic platform through which to keep in touch with friends from all walks of life- but that's how I think I want my life to stay - partitioned, at least to an extent. One of my friends today pointed out it was scary having her dad on Facebook - how many want their parents of any age having that level of knowledge of our personal lives? Actually though, i think having your children on there focusses the mind far far more!!

There is a lot to be said for a little anonymity, and less can definitely be more. I for one forget too easily the wide audience a simple status update has which can precipitate confusion and upset all too easily! I like the brief, simple concept of Twitter, and find myself drawn to it more and more. Maybe it is a comment on my life now more than anything, the fact that there is less need for in-depth online interaction than in the past but I firmly believe that our social lives whether based on age, life stage or location are there for a reason and the potential consequences of forgetting, or ignoring that alarm me.

Sunday, 11 July 2010

Quote of the Day

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport 

Sunday, 4 July 2010

Fate or Free Will? Today I'm a firm believer in Fate.

Fate is a misconseption, it's only a cover-up for the fact you don't have control over your own life.” Anon

Earlier in my life I subscribed wholeheartedly to the philosophy that Fate was merely for those "too weak to control their own destiny" , and that we determine our Fate by our actions. However now I'm not so sure.

I have deliberately avoided recent reference to our impending house move, partly because the saga has been running since last Summer and must be boring everyone as much as it is us, and partly because the situation has become so unreal that it is seriously lacking in the credibility department!! My life can be incredible enough at times, fuelling the fires of absurdity and tempting so called "Fate" by imparting new information has not seemed a good idea!

I wrote here about the second house we were trying to buy. Having virtually reached the point of exchange our seller's decided to take their house off the market. To say I was totally devastated was a serious understatement, we have to be in Ipswich for schools in September and until we are resident there in theory at least H could lose his school place. Time is running out and there is very little on the market right now either..... never mind the huge conveyancing sums we are running up on the attempt to successfully purchase a house!

Whilst I desperately tried to fend off the impending nervous breakdown (no pun intended, this move is seriously doing me in) my parents and I spent a morning frantically phoning every Estate Agent in the area. At this point I really believe Fate stepped in - Mum called the sales centre for the first new build we had tried to buy last year - but had yet to sell. The buyers of the last family home on the site had pulled out that morning, and our call was placed before anyone on the waiting list of no fewer than 162 hopefuls had been contacted. Better still, it is (in my opinion) the best plot on the site, and the best house of every single one we have viewed/considered/attempted to purchase this year. Catchment for H, walking distance (just, if necessary) for J and close to local amenities.

Luck doesn't begin to describe it - and we are not home and dry yet, but it certainly seems to us that we have actually had very little choice in this process, buffeted by the winds (and storms!) of chance. (Or perhaps this is evidence of Free Will and Fate/Determinism working together?) Whatever the case moving house is not something I will ever undertake again with so many variables at once. I may well have a certification in Advanced Juggling but this week I came as close to dropping all the balls as I ever want to again. 

Tuesday, 29 June 2010

"Blundell-gate" My views on THAT editorial.

There has been much furore this week over the Guardian article Breastfeeding is creepy, says parenting magazine in it's discussion of Kathryn Blundell's editorial in (of all places) Mother and Baby Magazine entitled I Formula Fed - So What? Not least because in an age where health professionals and hospitals are striving to win "Breastfeeding Friendly" accreditation this personal rant comes in a respected magazine aimed at the mass mothering market, and in Breastfeeding Awareness Week for maximum impact.

As discussed eloquently here my gripe is that once again the myths surrounding breastfeeding are clouding the real issue here and precipitating the age old breast v bottle debate. Breastfeeding does NOT make your breasts sag, pregnancy does and even if it did surely that is the reason women have them in the first place? Whilst we persist to deliberate over the either/or decision we lose sight of the salient fact, that breastfeeding is what nature intended, what is without any doubt is best for all babies unless there are other issues present which alter this.

Now before everyone jumps down my throat, I'm not a "breastfeeding nazi", and I recognise the role formula feeding has in modern society. I only breastfed my eldest for six weeks due to poor advice and his severe reflux and the prospect of returning to full-time work after a mere twelve weeks post delivery. (The latter a statutory requirement then.) It was the right decision for us then, I challenge anyone to say otherwise. I did have several "friends" in the NCT then who would indeed qualify for the above status and wrote an article "When Breast Isn't Best" for their magazine - which to their credit they published.

But, and this is the key point in my eyes, I assumed breastfeeding was the norm, what I intended to do and gave it my best shot. (With better advice and in different circumstances i might have succeeded too.) Never did I assume I would bottle feed my baby and no threats of sagging breasts of lack of alcohol would have persuaded me otherwise.

Over the years I have known many mothers who needed to bottle feed - due to maternal medication, ill health both physical and mental, ridiculous working hours, and infant health issues like the dreaded Reflux which all my children have suffered with. Formula feeding when appropriate should then be embraced as a modern miracle, a way of safely feeding a precious baby who centuries ago in some of these circumstances would have perished.

But as a first choice with no major influencing factors?

The myths are bad enough - when our twins were tiny and failing to thrive the number of doctors who genuinely believed that formula feeding was the way to go concerned me, not least because they were ignorant of the possible benefits and were therefore unable to make a balanced decision. (They were more concerned with measuring formula and weighing babies like those who recommended a family friend express then bottle feed her premature baby to ensure she received enough milk. I mean, seriously, can you not tell when a baby is or is not thriving?) The sad fact with our twins and many others with reflux is that it is all too often exacerbated or even caused by food allergies and intolerances, and a diet of only breastmilk until six months of age as recommended by the World Health Organisation is one of the very best ways to try and reduce the chances of a baby developing such issues. My youngest son was fed a top-up of formula in hospital and that single exposure precipitated a severe dairy allergy which might have been avoided. Yet despite being armed with as much factual information as possible I was still viewed as extremist and eccentric by the health professionals caring for my babies!

What I am trying to get across here is that viewing what nature intended, what is best in every way for a baby in normal circumstances and is supported by the international health community as eccentric really should shock! We as a nation would never accept removing all newborn puppies from their mother and choosing to bottle feed them cat milk as an equal option to their mother's milk and neither should we have this view for humans!

Until we in the UK start embracing breastfeeding as the norm rather than one of two equal choices, with totally acceptable alternatives when the need really does arise which are respected and supported then we are still going to have some of the lowest breastfeeding rates in the world. The language of breastfeeding of breastfeeding needs to change.

Kathryn Blundell's rant in Mother and Baby magazine endorses myth and misunderstanding, playing into the hands of the "have it all" brigade. It marginalises the campaign to promote breastfeeding as a ram-it-down-your-throat propaganda attempt (no pun intended!) rather than a drive to inform and promote understanding.

Monday, 28 June 2010

The most Amazing Feeling.

Today my son became an asset. Not a problem to be fixed, overcome or ignored but a positive and beneficial contributor. How good does that feel? Even better to him than it does to me, and that's saying something!

H's new school would so far appear to be one of the very best things to happen to him in his life so far. I only hope this continues! It started with the Holiday Club and Wraparound Care (Breakfast Club) telling me additional support really wasn't required and Harry was welcome to attend as many sessions as we (or he) wanted. Not only were they completely "unfazed" by meltdowns and tantrums, insecurities and possible running away attempts, they actually think Harry is good fun, has a wicked sense of humour and barely noteworthy in the challenge stakes.

Now we *know* this is not always the case, given a different environment, different staff with less experience etc it would likely be a very different scenario. As a family with two adults we struggle on outings at the best of times and until recently rarely attempted them. Snide remarks from ignorant members of the public do eventually grind you down! But how completely liberating to be told your child is "one of many" and "not a problem", I just cannot describe how good that makes me feel.

Today H had the first of four short visits to his new school. They met him at the Office, welcomed him, had a visual welcome book ready and an allocated SEN supporter for him. He clung to Richard, overwhelmed despite a previous visit until he spotted a friend from their Holiday Club we had sent him to in Half Term for this very reason. And the school KNEW this and put him in the SAME CLASS as this friend to help him settle in! After one short hour, Richard collected him, a happy grinning child who LOVES the new school and cannot wait for September. Even better, the school are so impressed with HIM and he's going in with a "gifted" label rather than a "problem" one.

I'm grinning all over my face as I type. His current school have been really supportive, this is not written in condemnation because they have faced a steep learning curve over the past 4 years - and so have we. That mountainous curve has been a hard climb but we must be somewhere near the summit if only in terms of understanding his current needs having picked and fought for his new school.

My son. Wanted, welcomed and viewed for his positive attributes whilst supported in his additional needs. Love it.

Friday, 11 June 2010

The "Science" of Childcare - the scourge of modern society.

As the coalition attempts to get to grips with tackling this country's enormous deficit inevitably Welfare and Education are among the front runners for intense scrutiny.

I doubt many of us would question a general spending overhaul in all government departments, the growth of management level employees over the past 10 or more years has been exponential and excessive. But what I as a parent, former teacher and Registered Childminder would most like to see is an admission that the patchwork that is the Children's Plan has stupendously failed to improve opportunities for children from less well-off families (Jill Kirby Telegraph 11th June), and that "learning outcomes" for children are no better with the blinkered focus on quantifying and measuring learning and achievement using the six learning areas and 69 goals every child should achieve by the age of five.

For me, it has always been obvious that children learn best when they are valued, loved, happy, interested and encouraged. Giving them opportunities and supporting their curiosity is of paramount importance, not photographing and recording their every action as evidence of progress and attainment. I’ve seen teachers carrying around digital cameras and post-it notes constantly so as not to miss anything they need to record rather than focussing on their vocational task in hand and found it quite distasteful. It is degrading for teacher’s to justify their professional recordings in this way, akin to a GP having to photograph each patient and add a note of conversations and discussions to support each prescription. Or the surgeon having to stop mid- operation to photograph each step and justify his action and the patient's progress! Totally absurd but a product of the gradual attrition of the professional qualifications of all who teach and care for children. Is it any wonder there is a national shortage of suitably qualified teachers and the job has become so much more about recording and pen pushing than actual teaching that those with the best teaching qualities are no longer attracted to the profession? And childminders are apparently quitting at the rate of 12 per day, small wonder perhaps when a trip to the park becomes another day of box- ticking and self-justification?

What is it with our obsession with making all that should be intuitive and spontaneous into a science? 

A friend with a premature baby was recently told she should keep expressing all her daughter's feeds so she could record exactly how much milk the child drank. What on earth FOR? If the child is thriving and producing plenty of wet nappies then intake is irrelevant and expressing potentially damaging since it fails to stimulate milk supply like a baby feeding. A different issue but another good example with our obsession with quantifying, measuring and recording!

What we are losing at an alarming rate in this country is the ability to trust our human instinct and intuition, as mothers, carers and professionals. 

The money wasted on this is shocking. There is no evidence that Every Child Matters has done more than generate a phenomenal amount of training, paperwork and stress for professionals whilst they are distracted from interacting , caring and nurturing those in their care. Records matter, but professionals should be able to write them without focussing on collecting evidence every second of the day.

In our drive for efficiency and frugality in the cuts ahead let's take this golden opportunity to reassess and reevaluate what really matters to our children. This requires far less financial input and reinstates the professionalism of those working with children. It would recognise the all-important ingredients for happy, thriving individuals in all arenas and form the building blocks of happy successful adults.

As human beings we need to be loved, nurtured and respected. Children should have opportunities to succeed and progress but no amount of tick boxes and performance indicators can guarantee this. Unless there is good reason for greater scrutiny on an individual basis attempting to mechanise a child's development is costly and superficial at best, at worst it undermines professionals and prevents them from doing what they do best- caring for our children.

Monday, 24 May 2010

RIP Zippy Mouse

It's been an odd week. After calm acceptance (below) came the storm. First the rental was offered to someone else, having been supposedly taken off the market, then problem after problem arose with the new build. It would seem I am all out of adrenalin because even I was surprised how serenely I digested each piece of news and with visions of our family sleeping in cardboard boxes somewhere on the road to Ipswich I dedicated the week to serious house hunting. It paid off, and many miles, viewings and tired stroppy children later we had two beautiful (and very different) homes to choose from.

So do I play Lady of the Manor in a superb Georgian house or Footballer's Wife in an equally appealing town house? In the end we plumped for the latter, if only because it is far closer to the Station and it would seem that two house moves are no longer on the cards - all being well in the summer we will make one move to our new home and be settled in time for the new term.

This week had more surprises up its' sleeve than Paul Daniels however and midweek I realised with horror that my smallest boy was infested with head-lice. Ugh. Something every parent dreads but thankfully he was easy to clear. I made sure I took a large paper bag to school today when the head-lice notification letters were sent home (I now keep a stock of useful identity shields, highly recommended for days like today) and fondly remembered bringing similar slips home to my parents when at school. We used to sit on the school bus home and draw little diagrams of lice all over the letter too! Lovely...

The on Friday, after a blisteringly hot first Sport's Day at Josh's school we came home to discover his beloved hamster, Zippy, had died in his sleep. He was pretty old for a hamster and had enjoyed a full life but we are extremely sad to see him go. We held a funeral and wished him plenty of banana chips in his little niche in heaven, thinking of the prehistoric squirrel in Ice Age and his acorn! Zippy was our first hamster and a real character, he will be much missed.

So, on with a new week, forget the battered Volvo and Hunter Wellies, this summer I need blonde highlights, hair straighteners and a visit to the nail parlour. Wind Chimes de rigeur and a good dose of Mediterranean Sun would be nice. I think the Multipla might have to go though..... it never was going to fit either option!

Monday, 17 May 2010

Experiments in Minimalism

So here I am, sitting in my sunny spot outside my kitchen. Which, in point of fact, will no longer be "mine" in 7 weeks of so, and if we're being picky the chair might be my favourite spot to sit when the sun is out, but I rarely sit down at all! Still, when the sun is shining, and I find a rare quiet moment it is most definitely my most favourite seat. Shutting my eyes, listening to a bumble bee drone past I could be a child again, in a different garden at a very different time. I'm quite an aesthetic person, finding sounds, smells and sights incredibly evocative and  sustaining. Just thirty seconds of imagining a time of incredible simplicity and serenity is sufficient to revitalise me again.

We are busy packing all the items we will not need until we finally move into our new build early next year and I have to remind myself in my haste that material items carry all-to-important sensory meaning too. I can do simplicity, live very well without the trappings of materialistic accumulation but I would not stay happy for long without the little touchstones of my life. This seat has seen me watch my children grow and play, nurse babies and cuddle baby rabbits. Plan menus, muddle through family logistics and campaign strategies (for anyone who tells you running a large family is not akin to a major military campaign is being economical with the truth) and escape the noise within.

Not bad going considering how infrequently it is used - but then that is exactly the point I am making. Filtering everything out except our wind chime tinkling in the breeze for the briefest of spells is quite sufficient to calm the soul. Which is why I will be packing the most obvious of creature comforts during sixth months of minimalist experimentation, but the chair, the wind chime and hopefully some sun this summer will be coming with me.

Saturday, 15 May 2010

Hadleigh Show

Well today, at last, the sun seemed to break through what has been a truly wintery week.  What a difference a little bit of sunshine makes. Today was the Hadleigh Show, an event I look forward to every year. In a moment of ambitious optimism we decided to all go, hoping for few tantrums and meltdowns and  as little rain as possible!

It started well, until H spied the Australian leather hats and decided that he couldn't live without one - and any suggestion otherwise met with screaming and sobbing. We doggedly persevered with promises of hats for good behaviour and enjoyed the sunshine, ponies (my daughter informed me"girls don't ride horses Mummy")  and laughed at the Dog Agility Team whilst keeping an eye open for the most promising coffee stand for essential caffeine top-ups to steady the nerves. Queueing for lunch required more paper bags than we could muster, so lacking invisibility or at least limited visibility we gritted our teeth and stoically reminded H of the promised hat if he managed to wait with at least attempted patience. Someone please remind me next time to obtain a menu from the burger van in advance to allow him to make his choice from a clearly set out list of choices though, since interpreting a chalkboard list whilst waiting in line was never going to work.

The twins enjoyed sitting in the fire engine, always a highlight of the day for them. This year though A had more in mind than pretending to drive and managed to start the computer up! A few clicks on the mouse and he'd reconfigured the nav-com, and the engine was destined for Pontefract. Swift intervention from Richard prevented trouble but A was really very disappointed! ( I think he had designs on following in Fireman Sam's footsteps, he's always had a penchant for fire engines. ) K's wish for the day was to see some baby piglets though and in this we failed to deliver but she did concede the cows were "quite nice". Fortunately Richard stopped short of pointing out the nearest we got to baby pigs were the bacon rolls at the burger van since we had only just managed to stop H getting progressively more frustrated as he struggled with the concept of eating meat whilst admiring the cute animals on display! The highlight of my day was getting caught in the Joules tent when the Heaven's opened, and I was forced to spend fifteen minutes browsing.... and spending more than I ought to. Well, it was obviously Fate intervening and it would have been rude not to!

Eventually, we congratulated ourselves on achieving a family outing relatively unscathed and bought the coveted hat. I must admit it really suits him - and he is now wearing it asleep in bed!!

Wednesday, 5 May 2010

Transition - on many levels.

Too many perhaps. but then my life was never meant to be straightforward!

We are definitely moving house. Twice. Our new build will not be completed until Christmas (fingers crossed, but we are reading end January....) and we have now sold our current home. So, in a couple of months we need to move into rented and wait for the completion of our new home.

As I sit typing that it all seems very unreal, as though I were recounting the plans of some fictional family, hell bent on  a path of good intentions for bettering their daily lives with horrendous - almost laughable - potential pitfalls on the way. Apart from anything else, just HOW many visual aids is this master plan going to necessitate to help smooth the path ahead for H? Not to mention the legal substances I am likely to require to get myself through the next 8 months! Quite honestly, coffee and wine bills really need to be factored in to our costings. The stress of moving a family of six twice, changing schools for three of the four children, relocating medical services for the younger three and ensuring continuity of care is enough to send the most laid back of mothers into a headspin. Those of you who know me well will recognise that isn't a good description of yours truly, and although I have been told I've been shortlisted for Most Organised Mum of the Year I'm not sure an A Level in Advanced List Making or a Degree in Juggling (see below) is sufficient to safeguard my sanity in the coming months.

However, the promise of a simplified school run (read "walk") and a new kitchen can make it all seem worthwhile and quite exciting. I suppose it comes to something when granite worktops with natural copper flecks shimmering within pushes your buttons but for most mothers the kitchen is of prime importance. Having the opportunity to design the interior of your new home is thrilling and absorbing, hopefully the inevitable brain ache from the necessity of two house moves will be more than worth it.

On the whole I don't *do* big changes. Or at least I do, but with maximum stress until I feel I have "arrived" safely on the other side. Take my new computer. I am now the proud owner of a MacBook Pro, which I am totally in love with. (Macs really do make PCs seem two dimensional and brittle.) But the heartache, angst and mental agony at the incipient learning phase was almost too much to bear. Watching my virtual footprint cease to exist for a few hours until the transfer was complete was painful in the extreme, like moving house in microcosm. unlike my husband, the journey is never pleasant, the process of transition I could totally do without. Just get me there ASAP!

Tuesday, 13 April 2010

"Protection" or Prejudice?

There is much written at the moment in Blogland about the Children, Schools and Families Bill, Child Protection and parenting choices. What most of you reading this or any other Blog today might be unaware of is the potential impact across all society that this Bill might have had if passed (and still might have if Labour are re-elected and have a second attempt) which extends beyond how you choose to educate your children. It challenges something totally fundamental in our society. Not only does it challenge the right parents currently have to choose how their child is educated but introduces an unpalatable advance into the erosion of individual choice and independence to be and live as we choose.

The CSF Bill which has largely been dropped due to pressure from Home Educators who not only objected to State interference in their right to educate their children as they see fit but also pointed out the obvious - that a HE child is no more or less "at risk" than any other school educated child, all of whom have long periods of time at home. The unfortunate Khyra Ishak was indeed deregistered from mainstream schooling but was not, by any stretch of the imagination Home Educated. But suspicion is the child of ignorance and choosing a path for your family which is in any way different from the vast majority should not leave you open to prejudice. Yet Ed Balls has stated he fully intends to "provide proper protection to home educated children" if Labour are re-elected.

There is a veritable industry that exists to "safeguard children" now which must therefore justify its existence on a daily basis. So deep is the desire to prove themselves at every level this "protection" system is trapped looking for cases and fitting individuals into their preconceived moulds. There is no room for uniqueness, for unorthodoxy, God forbid you do not choose to or are unable to tend towards the mean. This offers up a perfect opportunity to convert misunderstanding into accusation. 

This is a constant battle fought by parents of disabled children, particularly those with invisible disabilities. So vast and complicated is the framework in which support is or is not available that if there is not an immediately visible, convenient niche in which to slot your family (either inside or outside that framework) then you invite suspicion and intervention. Instead of training health professionals, social workers and other front line workers to respond to individuals on a case-by-case basis we are trapped in a system where government frameworks and policies constrain free, rational thinking and financial accountability has been stretched to require self justification at every level. In our case we have a very able, but clearly autistic child who does not fit the mould of expected outcomes for education and behaviour management. Consternation and lack of alternatives precipitated enquiry and accusation because there wasn't a tick box for our family.

The modern world needs to learn  to celebrate individuality, in a current time frame rather than persecuting those with something unique to offer society. We are taught to recognise and remember those who were "different" in history and we are learning, slowly, to recognise apparent "deviations" from the norm when faced with large groups. Religious toleration, racial and social acceptance are goals many aspire to if not reach but still, in the twenty first century it is still socially and politically acceptable to seek and root out, to stigmatise, persecute and victimise that which is unfamiliar and alien. It seems we have learned little and increasingly offer ourselves up to be judged by supporting continued and increasing State intervention in our lives. Without individuals and individual ways of living we might just as well enter a Brave New World and admit defeat of the very essence of being human.

Monday, 12 April 2010

Juggling - Advanced Level

I rarely post about my kids' medical issues, it's not something I particularly enjoy writing about and I seriously doubt anyone reading this Blog would choose to read such contributions.... but if you are reading this and therefore have at least a passing, superficial interest in my family then today I feel it necessary to share at least some small details.

Our youngest son made today a Red Letter Day. A day of Great Significance, although by no means the only one. Up there with H learning last week to ride his bike, today A went to the loo. Now I'm not talking potty training here, but the celebration of something most of you no doubt take for granted. Not to mention something very very few of you might see as cause for celebration!

The juggling referred to in the title is as you will no doubt correctly assume, my daily challenge. Actually I rather like the picture, because it really does illustrate for me my perpetual daily challenge on so many levels. We all learn to juggle from an early age, none so well perhaps as mothers. If you prefer an alternative analogy consider instead plate spinning, keeping everything spinning smoothly whilst avoiding any accidents! Life is supposed to be like that, it's fun, creative, absorbing, exhausting, thrilling and stimulating. I thrive on it - in the absence of a high flying paid alternative the more challenging life at home is the better. On the whole. And maybe with a minimum sleep guarantee. But what if the plates get further apart, change sizes, or the balls increasingly assume their own unique trajectories?

Take our med schedule. Granted none of the three children currently on medication are on anything particularly significant on their own, I know some friends reading this deal with far more. But I do find myself wondering how on earth I can maintain the crazy four-times-a-day current timetable which (when typed out) spans an entire page of A4?? It comes to something when a four year old requires maximum (and over the maximum) licensed doses for FOUR medications to do what nature intended and comes naturally to children the world over.

But today is a Good Day. Because aside from the input required to make it happen, I can go to sleep in the knowledge that today, A managed to go to the toilet. Contentment indeed.

Saturday, 10 April 2010

Spring is *finally* here!!!

Isn't this weather amazing? We have spent all day outside, and the Spring Clean has started in earnest. I never cease to be amazed by the enormous energy surge I experience every year as winter comes to an end, and this year it has really taken me by surprise since only ten days ago I was in Edinburgh, it was snowing and I had never been so cold!

Today the sun has shone, vests were left in the drawer and J got his shorts out. Must be Spring :)

Sunday, 4 April 2010

More musings - the importance of being me.

Today we watched "Cloudy with a chance of Meatballs" which I must say was the *last* film I expected to sit through let alone enjoy but the end really got me. How many of us feel constrained by the chains society chooses to impose upon us, half yearning to "fit the mould" and be accepted (and popular) and half desperately seeking the confidence to find the chink of light in the armour we find ourselves in and break free?

At some level most of us are (at some point) irritated by the monotony of life, however chaotic that life may seem to some! The unfolding of day after day of sameness, with the complete lack of recognition as to what might bring welcome change is frustrating and disturbing. The yearning for personal fulfilment is definitely there, but in so many ways I have that already.

So "what next"?

Friday, 2 April 2010

My brain hurts...

Just for a short time it would be nice to stop thinking - or at least to only consider banal stuff like how much chocolate to eat and whether I really need a second glass of wine. (I do, actually) We have been stuck in analysis paralysis for a week or more, the final and most traumatic of the decision making process which has been gathering pace since last summer.

Last summer, we decided we really would benefit from more space, and despite loving our current home we decided to put it on the market and at the same time consider the alternative - extending. The latter initially appeared ideal but we hadn't bargained for our new neighbours (retired couple with little else to do it seems) putting up the mother of all fights to ensure our plans were blocked, befriending the local council and making THE most ridiculous song and dance about the mere duplication of what everyone else in our situation has been doing on this estate for years. I guess it served to focus the mind, and although we revised, resubmitted and had plans of a sort passed we became committed to moving.

Then R changed jobs, and the nice little plan or dropping J at his early morning school bus each day started to look less than realistic. Throw the proposed dissolution of our Middle School System into the equation, with the peak disruption poised to coincide perfectly with H's transfer and moving started to look extremely attractive. Time to simplify, consolidate and upgrade. Cool.

Pity the Recession didn't share our new found enthusiasm. The ridiculous HIP requirement has resulted in a housing market less fluid than treacle and now completely lacking in the "just testing the water" percentage which previously gave a more dynamic feel. We've had plenty of viewers. We *apparently* have at least two buyers - but they can't sell either and thus the whole thing grinds to a halt something like Essex roads after the Winter of Discontent which created more pot-holes than the lava roads of Lanzarote. I know - I've been there.

So, in a potentially futile attempt to swim against the tide of apathy endemic in the housing market we are going to brave, possibly foolish and most definitely proactive. We're buying, never mind the selling.... but which one? A choice of two...... and that choice is, quite literally, doing my head in. We've done the floor plan comparison, walked countless times from each to the school three of the children will attend, considered the immediate locality for both and compiled copious "for/against" lists. None of it helps but seems to merely add to the general confusion however, so I seriously think we have only one option left, that of tossing a coin!

So major changes are imminent in the lives of all family members which we (all, actually) find quite exciting, and hopefully we will surge past the current Stalemate and emerge with a new home and proposed lifestyle in the next week or so! I'll keep you updated - and if you know anyone who wants to buy a lovely 4 bed, please send them our way!!

Wednesday, 17 March 2010


Listen. Can you hear it???

The sound of silence. A beautiful thing indeed and not something our house is usually blessed with between the hours of 5.30am - 11pm . Or did someone hit the mute button?!

Sometimes, I LOVE the TV :)

Tuesday, 16 March 2010

Children's Clothes

*How* difficult is it to successfully pass clothes down from one child to another?? I've had a whole DAY to myself today, something of a strange and new experience and have spent the morning trying to purchase the necessary items my children perpetually grow out of at the wrong time (ie out of season) and the afternoon in the loft (the confession of which will mean I have to endure hours of rib-tickling attempts from my husband tonight since I am known for liking time in our loft tidying and sorting, even when 7 months pregnant with twins!!) vainly attempting to organise what seemed like twelve years of boys clothes and miraculously find those the younger two might fit.

My daughter is a so easy. Apart from the odd item passed on from kind friends I buy new and guilt-free. I must say though that now I actually *have* a daughter the girls clothes available in the High Street leave a lot to be desired, but I'll save that for another post. The boys I attempt to pass clothes down with because it's more environmentally and purse friendly and I like what I buy. Or at least, I did. When I bought them - which might be 8+ years ago by the time son #3 gets to wear it. First there is the problem of successfully storing the clothes #1 son grows out of - which he does at an alarming rate and never wears anything out so there are a LOT. We have plenty of loft space but I always seem to miss the right box at the right time. Or maybe it is that despite being only 4 years younger than his older brother #2 son takes nearer 6 years to grow into his clothes - which *completely* throws my organisational system out.

Then there is the fact that #2 son is VERY particular about his clothes. Particularly particular you might say. We have (thankfully) made progress from everything being blue or black but he does have some very fixed ideas about clothes that feel "right" and are therefore acceptable. Then there is the fact he is positively tiny, several clothes years behind chronological ones. Son #3 has inherited or learned to have far too much to say about what he wears and is heading the same way and is actually fast catching up his next oldest brother, they already share socks and wellies and almost shoes.

Today I discovered a whole box of clothes son #3 *should* have in his wardrobe...... but despite my best efforts to persuade myself that the new things I bought this morning should therefore be returned I'm less than keen. Eight years is a long time no matter what condition they might be in and we are fortunate enough for me to keep what I bought today nonetheless. The guilt is slightly harder to dispose of though. Thank God for ebay!

Wednesday, 10 March 2010

First steps

I remember the day each of my children took their first steps, my sons all in a hurry - falling frequently, and my daughter's patient wait until the perfectionist in her was satisfied she could stand and walk independently without the embarrassment and frustration of falling! Such a magical moment as each proudly made the transition from baby to toddler. Little did I realise that nearly twelve years on my eldest would be taking another set of uncertain steps and that I would feel just as proud, excited and nervous.

Yesterday he was allowed to begin using his left leg after three months spent  recovering from a twice-fractured ankle. Initially his wasted left foot was too painful to weight bear but the resilience and determination of children is something to behold and tonight he is already more steady and confident. It will no doubt take some time for the muscles to regrow and strengthen, his foot appears a whole size smaller than the right (both narrower and shorter) and his shoe barely stays on initially! However it rapidly tightens as the reluctant tissue around the joint swells with unfamiliar use.

He's still dependent on crutches and will be for a week or two yet but this is every bit as thrilling as those first steps over eleven years ago. Mobility - and normality beckons!!

Friday, 5 March 2010


Family quarrels are bitter things.  They don't go by any rules.  They're not like aches or wounds; they're more like splits in the skin that won't heal because there's not enough material.  ~F. Scott Fitzgerald

How true. Especially when thousands of miles prevent reconciliation and blinkered  hypocrisy prohibits the ironic enlightenment that we are not so very different.

Monday, 1 March 2010

The concept of "normal"

Recent events coupled with deep thinking about our second son's future have initiated a new contemplation of the concept of "normal". When does something not "normal" become a problem requiring "fixing" and when is it evidence of the need for an environmental change to accommodate difference when someone cannot meed averages and stereotypes?

H struggles with school, he has Asperger's Syndrome, which means his social skills and understanding are years behind his peers. Yet he is extremely bright - no, gifted - in many areas and the vast majority of his knowledge was not gained at school but in the real world. Because he struggles so much with the real world on so many levels, it is understandably felt that social learning within school is of paramount importance and learning to "get along with" ones peers of huge significance. Interesting then, that his social skills improve dramatically in the school holidays when the huge anxiety that is school disappears for a few weeks. His self confidence grows and his behaviour improves.

I say "improves", our complex child doesn't suddenly and dramatically "lose" his difficulties, cease struggling in a world which fails him all too often but the reduction in anxiety is nonetheless liberating and significant. His frustrations at learning in an artificial environment with rules tailored to the majority and a focus on learning as a group ebb away and the real learning begins. For H is a child with an enquiring mind and the knowledge, means and understanding to satisfy it and it is distressing to see him turned off the concept of learning whilst attending school.

Not for one minute would I criticise his school though - they have bent over backwards to accommodate his differences, help him "fit in" and make friends. They have the same agenda that we do - wanting H to be happy, sociable, have friends and if he learns in school as well then that's fantastic. But at what point do you stop trying to change the peg and look more closely instead at the hole you are forcing it into? Most children may be similar shapes, fitting well into the hole provided by school - certainly our other three children would seem to be and love school. but when is enough enough? The third medication, the 25 hour Statement or the Special Needs placement? When is it "OK" to deny a huge part of your child just to ensure he has a chance of being acceptable to society?

Time I think to look at that hole - and perhaps find a new one. I personally feel H will be a happier, more fulfilled, self-confident individual better equipped to face life in the "real world" when we acknowledge his differences and work with him rather than against him. I can't change the world for my son but I can help him work with his strengths rather than battle his weaknesses.

At the moment, the law still states that parents have a legal responsibility to ensure their child receives an appropriate education. That doesn't have to be in a school and doesn't have to come direct from the government. Unfortunately the current government have turned their misguided spotlight on Home Educators in a tragic attempt to meet their own criteria for protecting vulnerable children, forgetting of course that even school educated children spend a large percentage of their time at home! If you are at all interested in the current Review read this excellent critique here . But for us, whilst we still have the chance in this increasingly State controlled country I'm seriously considering giving it, and H a chance!

Sunday, 28 February 2010

Parenting in the face of Prejudice

This has been a tough week. It has involved justifying myself and my family in a way I haven't had the misfortune to for some time.

For reasons known only to themselves one of the parents at H's school has seen fit to persistently complain about our use of the Disabled Parking space at school. This is frustrating and infuriating on so many levels.  

First, I have the only disabled child in the school and am not preventing anyone eligible from using this space. Second, I HAVE a Blue Badge, since H would regularly run off, requiring third party intervention more than once and impressively bringing Colchester High Street to a standstill on more than one occasion. He has been a clear danger to himself and others and his paediatrician recommended I apply. Third this misguided person has not had the courage to discuss my use of this space with me, or even with the Head in person, but has instead resorted to anonymous emails from an address not registered with Parentmail and leaves his/her ignorant ramblings unsigned. 

This isn't the first time this has happened to us or my friends with Autistic children and will most certainly not be the last but that doesn't make this outdated, narrow minded bullying (for that's what it is) acceptable.

Now I'm totally thrilled for this person that their life is so free of other stresses and worries that the location of my car is uppermost in their mind, although I do find it rather sad that they clearly have such an empty, unfulfilled existence that remotely bullying parents of disabled children pushes their buttons. But what *really* upsets me is their obstinate assertion that my child is not disabled. Of course, assuming they have any knowledge whatsoever about him and his multiple, complex diagnoses, our life and how challenging just getting him to school is (let alone keeping him there) what gives ANYONE the right to judge someone else's child in this way?

Our modern, inclusive society promotes cultural and religious toleration and understanding and encourages empathy and consideration for those less fortunate. So it is distressing and depressing that so many still consider only physical, "visible" disabilities to qualify for support. I have friends who have been approached in supermarkets and loudly offered advice on parenting their "unruly" children and have been told myself I should "not have been allowed more children because I cannot control my son" and these views filter down to their offspring who frequently tell me when I am helping in school that my son is the "naughtiest boy in the school" and their "mummy says he should be made to leave and go elsewhere". 

Those who bully the parents of Autistic children (or any others suffering invisible disabilities) should take a long, hard look at themselves and thank God their little ones do not have a daily battle for acceptance, understanding, and the liberty to be themselves in a world they have as much right to exist in and be part of as any other child. Life is not a level playing field and allowances should be made for those less fortunate, and a little sympathy meted out for their parents - for whom life is never going to be plain sailing.  

Thursday, 11 February 2010

"Delete your life - Yes/No/Cancel"

What is it with mobile phone software????? Is it THAT difficult to get a software engineer capable of producing pc compatibility software of at least A level standard capable of synchronising date between phone and computer? In an age where mobile phones are becoming ever more sophisticated there is an unmet demand for adequate software to effectively (and securely) link phone data with pc data.

It may be that Apple has solved this problem. Indeed everyone I know raves about the iphone - but for those of us with no hope of obtaining the nirvana of mobile communication there is this little issue of phone to pc connectivity. This week I bravely (incredibly bravely, had I known what this week had in store) followed a friend's advice (you know who you are Simon) and strode bravely into the 21st Century, embracing the electronic calendar. Now I'm a paper and pen kind of girl and whilst I am also admittedly something of a closet geek I love my diary. So this leap of faith was quite the milestone, and I carefully transferred the contents of my dairy in an electronic experiment.

All appeared to be going well until today. I quite appreciated the drop down to-do list for each day, which is quite extensive for our family and saved carrying around a bunch of notes. However, the problem came from the phone deciding to revert to monthly scrolling rather than weekly. I assumed I had forgotten to enter a few appointments and entered them accidentally in March, rather than April. I quickly realised my mistake and went to delete the duplicates. I selected a day... and the phone benignly enquired whether I would like to delete all entries. Not "would you like to delete ALL entries, your forthcoming commitments, your children's appointments, essential to-do lists and in fact, your entire life for the coming month, but just "delete all entries" - for that day. Or so one would assume. In a split second I watched the entire calendar disappear. There wasn't even a to-do list left to add "stiff drink, revert to old diary" on.

Fortunately I had backed the thing up, but it didn't end there. To retrieve the back up, I had to allow the phone to accept the pc as master, for Calendar AND Contacts. This was not what I had in mind at ALL since I have two separate contact lists, one of emails and the other mobile numbers, which I prefer to keep separately. There was no option for a tertiary level of thinking and I gave up.

Computers are only as clever as those programming them, and I have now reverted to my paper diary. Either my life is too complicated for an electronic alternative or those responsible for the trashy pc to phone software which came with my mobile have only a handful of contacts and one or two entries on their system. The latter is probably true of most software engineers (incl the one I'm married to!) but until my own life is that simple I'll stick to paper and pen and the knowledge my life will not suddenly vaporise at any given moment!
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