Got a letter at the weekend from somebody claiming to be the clerical officer for Grenouille’s school doctor, allocating an appointment (in Easter Week, so considerate) for Grenouille to have ‘medical progress assessed’, anent this summer’s Statement Review.

I definitely have a hair-trigger paranoia reflex these days, because this relatively harmless communication has royally pissed me off, for a whole hodgepodge of reasons.

Firstly, I resent being allocated unasked-for appointments, as though Grenouille and I had nothing better to do than dance attendance on random professionals at times of their choosing.  Even with a caveat about being able to reschedule if the time isn’t convenient, it still feels like a coercive imposition, and after stubbornly resisting such pressures for over a decade, the merest whiff of coercion has me digging my heels sullenly into the native heath and sticking two fingers up at anyone within line of sight.

Secondly, there is a vaguely threatening tone to the letter – a sense that if we don’t co-operate with this piece of procedure, it may adversely affect Grenouille’s schooling.  Patently absurd.  The excellent school staff are totally on top of G’s medical needs and they don’t need some new person telling them, again, how to do what they are already doing perfectly well as per instructions and training delivered by – me.  If they have a query, they direct it to – me; and if I were ever unable to answer (it ain’t happened yet) I would know to which of G’s many specialists to apply for an explanation.  The only reason I can see for requiring this examination is so that somebody, somewhere, can argue that G’s needs have reduced, and funding and support can therefore be reduced commensurately.  I’d like to be proved wrong about that, but I’d put money on it that I won’t be.

Here we come to thirdly, because the idea that Dr. School will be able to ‘assess progress’ is gut-bustingly risible.  For starters, if you want to evaluate progress, you need a baseline from which to begin measuring distance travelled, and Dr. S. doesn’t have one.  He (or she, we have no way of knowing which, since he (or she) is a total stranger) has never met Grenouille.  There is no way in the world that a 30-minute appointment will suffice for Dr. S. to absorb all G’s health complexities, never mind evaluate their evolution over the last twelvemonth and assess their impact on G’s education.

In any case, we have been here before.  When we began the laborious and tedious process of getting the then-pre-school-aged G a Statement, I requested reports from all the professionals involved in G’s multi-disciplinary team (I think we had about 10 divisions in the file back then; nowadays we are up to 20 – and counting).  Reports came in: from the doctors in the various specialisms; from the therapists – PT, OT, SLT; from the educators – the SENCOs at the mainstream and specialist nurseries, the peripatetic teacher.  All were submitted as evidence showing the need for the provision requested.  The Education Authority, however, would only accept a medical assessment from their own education specialist doctor, so we duly rocked up for that appointment.

It was a farce.  The doctor had a two-sides-of-A4 pre-prepared form to fill in, and after she’d gone through it, noted down date of birth, height, weight and ticked so many boxes, I said, but that hasn’t taken account of this, which affects G’s education because of … And then there’s … which …  Plus I have to mention … since it … and the Authority needs to bear in mind that … .

The doctor said, “Oh, we only need to know what is on here”, pointing at the form.

I goggled at her.  “You have got to be joking!  How can you claim to be evaluating G’s medico-educational needs when you restrict yourself to basic physical measurements?  I am not signing that form as a true record of G’s medical condition unless you add all these other things.”

The doctor said, “I have to form my own opinion, I can’t take your word for it about all these other things.”

I thumped my copy of G’s medical file onto the desk, possibly* slightly** harder than was absolutely necessary.  “You don’t need to take my word for it.  Here are the letters from G’s specialists and therapists to back me up”.

In the end, the doctor, somewhat flustered, had covered the margins of the form, and the space between the tick-boxes, with additional (slightly illegible) notes.  In my opinion, however, she had not accurately paraphrased all the information that I had given her, so I still refused to sign the form, settling instead for writing a note saying which bits I disagreed with and how I believed the disputed items should be worded.

The enragingly stupid thing about the whole sorry business was that apart from the height and weight, which she did measure for herself, everything, everything – even G’s birthdate – which that doctor passed on to the Education Authority came, not from her ‘professional expertise’, but from ME.

She had never heard of G’s underlying rare genetic condition, so of course couldn’t have the first clue about its implications and consequences.  I, on the other hand, in collaboration with parents of other children with the same condition, had done extensive research into what publications there were, and had helped compile further information and observational data as they became available.  Consequently, I had a better idea even than Grenouille’s geneticist of what to watch out for.  Indeed, it had been I who had alerted G’s paediatrician to some of the areas that needed to be monitored, and had requested those referrals in the first place. The Education doctor had no sense of the complex interplay between G’s various areas of ability and delay; I had been observing and managing them every day since G was born.  She was unfamiliar with some of the medications that G took and didn’t know how they were administered.

It would have been quicker, cheaper, and better all round if the Authority had sent the bloody tick-box sheet to me in the first place, but of course, as a parent, my knowledge only counted as expertise when filtered through the medium of a professional with the ‘right’ letters after her name.

I don’t have MB ChB after mine, but I have more than ten times my ten thousand hours’ experience of Grenouille; surely that confers a degree of expertise?