Wednesday, 23 April 2014

Sometimes things go right

Here we are, the other side of a manic Easter break, life continues in the way it tends to -  sometime a calm happy oasis of people in their own little worlds, sometimes a noisy chaotic mess of competing needs, mostly somewhere in between. 

This week, or perhaps next, we shall be diving back into our regular lives.  We don't have a routine or a schedule, but we do have a pattern to our days.  Shaped by external clubs and activities, places we need to be at set times.  Our time at home will continue to be worked around L's revision for his IGCSE's.  The first is less than a month away! Eek!

Last Saturday we got a letter.  A surprisingly nice letter.  A resolution to something that I wasn't really expecting to resolve so easily. 

Just before Christmas I went to an appointment at CAMHs with J.  We saw a Psychiatrist and a Clinical nurse specialist.  They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.

I left the meeting feeling dejected.  I could tell by their words and actions that they saw a lot less of J's issues than they needed to.  They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.

The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful!  There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.

We took a few days to work out what to do.  After all, these are "The Professionals."  They Know Everything.  Could we do anything?  Was there any point trying?   It really felt like a "Them and Us" situation, we felt powerless.

When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues.  As things stood we didn't recognise J from the description in the last report.  Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.

So we wrote a letter.  Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage.  We thanked them for their report and expressed our concern at the errors therein.  And then sentence by sentence we took apart their report and re-wrote it.  There was one paragraph in their three page report that didn't need altering.  Just one.  We listed what they had said, and then corrected it so that it reflected J.  Our letter was long, but it was also detailed and polite.

Then we waited.

The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.

The second thanked us for the letter and told us they would respond but it would take some time.  That one was already six weeks after we sent our letter, almost three months after the appointment.

And then, on Saturday, a third letter.

An amazing letter.

A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.

The letter apologised for the delay in getting back to us.  They even thanked us for our letter, but the key phrase is :

As this report was based on information provided by yourselves . . .
They spoilt things a *tiny* bit by claiming the original report was "quite difficult to re-write" - surely it's a word processed document that they could have just amended?
Enclosed was a three page letter to be attached to the previous report.  They have basically taken our letter word-for-word, but each paragraph is begun with a phrase like "You added" or "You corrected."
It's all there - in our own words, with the things we feel are the biggest described in detail.
When we got the original report I had no idea if we had any way to do this, but by being polite but firm we have challenged the "experts", made the file more accurate, stood up for J, stood our ground.
So please, everyone out there, if "They" write something that is wrong, stand firm, challenge them, it CAN be done!
Now we face a wait for J to have an ADOS, but at least the paperwork shows him as he is, not some distorted twisted view, and that is the best we can hope for.

Wednesday, 2 April 2014

Sunshine, writing and being us :)

It's been a while . . . So much is going on here that it's hard to find a quiet moment to marshal my thoughts, and I'm exhausted, which makes it even more likely that I'll end up writing nonsense ;)

A week or so ago we had to fill in the paperwork for L's exam entry.  Somehow that made us realise how little time he has left to get his head around the syllabus, even though we all knew the dates and he's doing fine.  That has mean that he and I are spending more and more time ploughing through his books - and that really is a time sink!  For the most part it's going well, even though it's a long way from the maths I know and understand.  As much as anything I am learning with him, and I find that gives L more confidence if he gets stumped. A phrase that keeps cropping up is that "it's not a test", so if he needs to work things through with me it's not a big deal. 

For a long time L was a perfectionist.  If he did a page of maths and got 19/20 he'd be upset about the one that was wrong.  Finally we're overcoming that - because so much of the syllabus is new to us, or takes things we know further, L is at long last accepting that he can do well without a perfect score.  That said he's usually hitting well above 90%, so all is good :)

We have begun working through Write from the start - a sort of hand-writing program.  All four children are doing it, mostly happily.  The exercises are designed to improve hand eye co-ordination, pen control, to work with the proprioceptive system, to develop visual discrimination and generally to come at things from a neuro-developmental slant rather than just a repetitive one.  All four children had difficulties with the first exercise  - though different difficulties (as ever!) 

The task was to put a single dot inside a small circle.  The aim was to improve precision, develop and awareness of how hard to press the pen(cil) down, to work on hand movements and pen-grip. The circles were in columns, and got progressively closer together. L was fine to begin with, when there was a lot of space around the circles, but as they got closer together he found it increasingly hard to see clearly what he was doing.  I'm guessing this is a dyslexia thing, and hoping that by working on it we can help other reading issues.  M found it hard to get the dots to be dots rather than lines.  He struggled from the start, but improved as the exercise went on.  J was very disorganised in his filling things in - he found it hard to start at the top left and "read" across, and kept missing our circles.  A found her hand got sore half way through, but otherwise was fine.

I'm hoping that since each of them had quite specific issues, working through the program will help them improve - if they'd all whizzed through it without a pause it might feel like a waste of time / money. And since the issues were so clear, it should be easy to keep track of how things are going.  We're on the eighth exercise now, all of them are still fairly happy to keep going - I think it helps that the sheets only take about 5-10 mins to complete, and aren't particularly hard. So far we've had an improvement in the tasks themselves, but not in their writing.  I'm hopeful though :)

I like the program, it seems very gentle in its increasing difficulty and short tasks are easier to fit in.  I hope that it will work - I've read lots of positive things about it - I'll let you all know how things go :)

In other news . . . the weather!  Wow! It's been so lovely here we've been out enjoying it :)  We went to a local rec' and L flew his quadcopter - he's actually really good - the rest of us just hit each other with foam weapons.  Then L joined in the melee.  We have a large number of weapons - all of them are designed to look like fantasy weapons, for use as costume in Live Action Role Play (LARP), and they are all safe for LARP fighting.  Made from foam, with a solid core, then coated in either rubber or latex they do sting, but rarely hurt (every now and then a freak shot catches someone badly, but really that's unavoidable in this sort of playing)

We all really enjoy this sort of "fighting" :) It's a great way to burn off energy, and it is a big adrenalin rush.  The kids enjoy ganging up on my husband and I, and it is just a very "us" thing to do.  There are probably all sorts of "soft" skills being learnt too though - hand eye co-ordination, consideration for others, not to charge from too far away or you'll be exhausted by the time you get there . . .

So, here are a few pics . . .

A didn't get hurt BTW, J is very good at not *actually* making contact :)

Someone's gonna catch her biggest brother . . . .

General Melee

Just to prove M was there too :)

For Freddie

This post is late, mostly because Blogger doesn't like me, and had trouble with the pictures.