Houston, we have a problem . . . Well, I do anyway!
Last time I blogged I had to change the account access, and now I can't remember the password! It's set up on Gmail, which isn't the main email I use, and I'm struggling to get a password reminder sent anywhere I can read it . . . for now I can access the blog via my tablet, but can't get into my gmail account at all. So I'm typing on a *really* small screen. The prospect of which has put me off blogging for a while. But it's about time I bit that particular bullet, so here we go . . .
Life is full of ups and downs, and one of the downs is CAMHs - so far they've been pretty decent with us, only one dodgy appointment and the record was set straight when we wrote to them. We are so close to the end of M and J's diagnosis journey, I can almost see the finishing post. So of course this has to be the time our local CAMHs have been told to find 25% budget savings! We know some of the people the boys have seen have taken redundancy or early retirement, so changes in who they are seen by is inevitable. I *think* that worked in our favour when J had his ADOS the other week, two fresh sets of eyes seem to have seen things a bit more clearly than those who thought they knew him. But the down side of this is longer waiting times.
It's been almost five months since M had his ADOS, and we haven't had a follow up appointment. So my husband called (again!) and asked how things were going . . .
Now, I do understand that losing a lot of staff creates problems, and by all accounts another member of staff is often off sick too, but my understanding has limits. So it was better that my hubby call, he's far more patient than I am ;)
He was told about budget cuts, longer waits, staff off sick, and then as a concession the lady he was talking to said she would try and send us the raw reports, although they "don't normally do that." A couple of days later we got the reports. They have more than a few grammatical errors, and it's clear they are meant for internal uses only, but now I can see what happened in the two ADOS assessments. I feel a lot happier :)
The reports are at great pains to point out that they are part of a larger process, not a diagnosis in and of themselves, and so I'm not going to share the content, suffice to say that it made me happy, then sad, then relieved.
I have no idea when we will get to the next stage, we're waiting to see the Neuro-development clinic, and hopefully when we do we will have a formal diagnosis for each of the boys.
So, that's M and J . . . The next big news is L.
Back at the beginning of May L began a paddle sports course. He was very nervous, unsure of going at all, it took a lot of talking on my part, and a lot more pressure than I was actually comfortable applying. In the end he went, with the proviso that he try for two weeks and if he hated it he could stop going.
He loved it! As far as I can tell he is actually quite good at the various paddle sports, and has passed the course with flying colours. This week he has gone to Devon with the group, for four days of paddling mayhem :) At 15 1/2 he is the youngest of the group, but he is happy with that, and has made some good friends. He's thinking of joining a local club and earning more qualifications . . .
Lastly little miss A. She is enjoying the school holidays. She is "playing out" for pretty much all the time we are at home, she has lots of local friends. For A socialising comes easy, she is a little bemused by all the "best friends" nonsense, and it has been a bit of a shock to her how unkind some of the kids are to each other, but on the whole she is happy and thriving.
Over the summer we have a lot of activities booked with our local ASD support charity, we saw "How to train your dragon 2" with them on Monday, and are going swimming on Saturday. It's shaping up to be a very fun few weeks :)maybe the start of the school term will give us a bit of a rest!
Wednesday, 30 July 2014
Wednesday, 18 June 2014
Up, down, and often round the bend
It's been a while since I wrote anything here, life has been a curious mix of crazy and not worth blogging about.
Often I get mental blocks - if something big is happening then I can't seem to plan things the other side of the big thing, and we've had some major things to get to the other side of!
The biggest reason for my silence has been L and his exams. He took Edexcel Mathematics B IGCSE and Biology IGCSE. We hit the books for some pretty major revision, and fitting "normal" life in around the edges wore me out. L does not like exams, and despite being pretty good at both subjects his dyslexia may well get in the way of decent results, but now the exams are over all we can do is wait for mid August and results day.
Revising has been awkward. I generally prefer to follow the kids as they show me how they want and need to learn. Thus far it's been a successful strategy, but revising for exams changed that. Now we had a deadline, and a specified curriculum. No more digging as deep as L wanted, no more skimming over the boring bits. Together we had to do this in a much more structured way, and it really didn't suit either of us! L wanted to look far more deeply at the cellular biology. Ecology didn't interest him. At times I was telling him to stop being interested, and at other times trying to help him remember things he felt no connection to. Maths was a little easier - until L wanted to know WHY trigonometry works, and why Pythagoras was so fascinated by right angled triangles. Still, at the end of the day we got through the material, he retained a lot of the information, and he went into the exam halls confident and with a good shot at things.
So that was one big thing.
Another has been a weekend away. Not such a big deal? Really? We went away with the children's scout troop. I am not particularly keen on quite a few of the leaders, and there have been . . . issues in the past with how the leaders cope with the boys differences. Add to that the fact that this was our first camping adventure, and that L was going to be left at home for the weekend alone . . . so much potential for disaster!
L was fine. He had a friend come over and stay for part of the time we were away, and together they managed to cook (pizzas and curry) sleep (at least a little) and feed the animals. They didn't change the kittens litter tray, or walk the dog, or wash up (not convinced L washed himself let alone anything else!) When we got home the house was intact, and I guess since L is only 15 that's enough of a victory for me!
The camp was OK too. The first night we had a thunder storm. So now we know that the tent can cope with a lot of rain in a short space of time.
There were lots of activities on the Saturday, and from those we learnt that A is awesome at climbing - she went across the traversing wall so easily, confidently and quickly! She is also fab at monkey bars and other "dangling" sorts of things. We really need to find a way to get her climbing more.
J really enjoyed the air rifle range - and he improved his shooting over the day too. He wasn't so good at the climbing side of things, but he did persevere and improve. One thing he excelled at was random conversation. J has a small selection of topics of conversation, and if the other person is even vaguely positive about them J will natter for hours. The other person, of course, rarely has to say anything, but J barely notices that!
M didn't find an activity that he excelled at, nor did he fixate on any one thing in particular, he did, however, have fun and try pretty much everything.
All three children were awarded badges and trophies at the AGM - they have all been recognised as working hard and trying their best.
J has had awards before from both Cubs and Beavers, A has from Girls Brigade, but M never has. He was so sweet as the younger two got their awards - cheering for them and being very encouraging. He clearly didn't think he would get anything, so when his name was called his reaction was lovely. Lots of smiles all around :)
In other news, our local CAMHs are having a bit of a reshuffle, and this has dramatically increased waiting lists for things. So whilst J finally has a date for his ADOS we still haven't had a follow up for M's ADOS which was on the 4th of March! This process is taking forever!
So now that the exams, revision and camping are over and done with, I have lots of posts bubbling around in my mind. It's amazing what climbing over those mental blocks can do for the subconscious :)
Often I get mental blocks - if something big is happening then I can't seem to plan things the other side of the big thing, and we've had some major things to get to the other side of!
The biggest reason for my silence has been L and his exams. He took Edexcel Mathematics B IGCSE and Biology IGCSE. We hit the books for some pretty major revision, and fitting "normal" life in around the edges wore me out. L does not like exams, and despite being pretty good at both subjects his dyslexia may well get in the way of decent results, but now the exams are over all we can do is wait for mid August and results day.
Revising has been awkward. I generally prefer to follow the kids as they show me how they want and need to learn. Thus far it's been a successful strategy, but revising for exams changed that. Now we had a deadline, and a specified curriculum. No more digging as deep as L wanted, no more skimming over the boring bits. Together we had to do this in a much more structured way, and it really didn't suit either of us! L wanted to look far more deeply at the cellular biology. Ecology didn't interest him. At times I was telling him to stop being interested, and at other times trying to help him remember things he felt no connection to. Maths was a little easier - until L wanted to know WHY trigonometry works, and why Pythagoras was so fascinated by right angled triangles. Still, at the end of the day we got through the material, he retained a lot of the information, and he went into the exam halls confident and with a good shot at things.
So that was one big thing.
Another has been a weekend away. Not such a big deal? Really? We went away with the children's scout troop. I am not particularly keen on quite a few of the leaders, and there have been . . . issues in the past with how the leaders cope with the boys differences. Add to that the fact that this was our first camping adventure, and that L was going to be left at home for the weekend alone . . . so much potential for disaster!
L was fine. He had a friend come over and stay for part of the time we were away, and together they managed to cook (pizzas and curry) sleep (at least a little) and feed the animals. They didn't change the kittens litter tray, or walk the dog, or wash up (not convinced L washed himself let alone anything else!) When we got home the house was intact, and I guess since L is only 15 that's enough of a victory for me!
The camp was OK too. The first night we had a thunder storm. So now we know that the tent can cope with a lot of rain in a short space of time.
There were lots of activities on the Saturday, and from those we learnt that A is awesome at climbing - she went across the traversing wall so easily, confidently and quickly! She is also fab at monkey bars and other "dangling" sorts of things. We really need to find a way to get her climbing more.
J really enjoyed the air rifle range - and he improved his shooting over the day too. He wasn't so good at the climbing side of things, but he did persevere and improve. One thing he excelled at was random conversation. J has a small selection of topics of conversation, and if the other person is even vaguely positive about them J will natter for hours. The other person, of course, rarely has to say anything, but J barely notices that!
M didn't find an activity that he excelled at, nor did he fixate on any one thing in particular, he did, however, have fun and try pretty much everything.
All three children were awarded badges and trophies at the AGM - they have all been recognised as working hard and trying their best.
J has had awards before from both Cubs and Beavers, A has from Girls Brigade, but M never has. He was so sweet as the younger two got their awards - cheering for them and being very encouraging. He clearly didn't think he would get anything, so when his name was called his reaction was lovely. Lots of smiles all around :)
In other news, our local CAMHs are having a bit of a reshuffle, and this has dramatically increased waiting lists for things. So whilst J finally has a date for his ADOS we still haven't had a follow up for M's ADOS which was on the 4th of March! This process is taking forever!
So now that the exams, revision and camping are over and done with, I have lots of posts bubbling around in my mind. It's amazing what climbing over those mental blocks can do for the subconscious :)
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 :
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 . . .
WE WILL NOW TAKE INTO ACCOUNT THE ADDITIONAL
INFORMATION YOU HAVE PROVIDED.
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.
IT WORKED!
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.
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