So, Day sixteen, Tuesday, being caught up on several days after the fact . . .
The kids did some book work - to be honest I'm getting bored of listing what they've done, so I'll summarise . . .
Each of them did some maths, some English and some science, L also did ICT, A and M read.
J wrote a short story for Cubs - it was hard going, and messed with his head. He'd been told by the leaders he HAD to write a short story or poem. He WANTED the badge (even though he had no idea which badge it is for) but he hates writing and finds making up stories very very hard.
So, torn between following the rules, wanting the badge, but not wanting to do the work there was no way it was going to be calm and easy going. We went through repeated requests for me to do it for him - me to write it, me to make it up, me to type it, but I refused (because, really, I had to refuse. It needs to be his work, and the leaders will ask and he will tell the truth.)
In the end he dictated the story, and I wrote it out, then he copied what I had written. It still caused tears and stress, but the suggestion of not doing it caused those too.
I read a while ago about all the processes involved in creative writing - the positioning of the hand and pencil, applying the right pressure, forming the letters, planning the word, keeping in mind the sentence you are writing etc. By breaking the task down - creating the story first, then copying letter by letter, we separated or removed quite a few of the processes. It seems to have helped, but it made everything take longer!
Another part of this being hard was J desperately trying to make the story as true as possible. He wrote about our dog escaping and going to the park. He wanted the park to only have things that the nearest park has, he wanted the story to reflect something that had actually happened.
I am sure the Cub leaders have no idea how hard this was for J, or how much their words affect him, but in the end it is J himself that applies the pressure. He wanted the end result but not the work, and somehow he needs to settle his mind with the fact that we need to work for things.
The younger three went to beavers / cubs / scouts, A also spent time "playing out" and life continued as it generally does.
Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts
Friday, 26 September 2014
Wednesday, 27 August 2014
Waiting and Wednesdays, D-day is here.
Wednesdays come along fairly predictably
It's generally every seven days or so.
You could even say Wednesday is a once-a-week sort of a thing.
This Wednesday, however, seems to have taken it's own sweet time.
In some ways this last week has taken forever, the time between knowing when the appointment was and getting there.
In other ways this Wednesday has taken 20 months - from first appointment to answers.
In yet more ways today has taken years - from first worries and wonderings to not just knowing, but hearing someone tell us "officially."
We had appointments at CAMHs today.
It was always going to be tricky, because we had consecutive appointments for J and M. Whilst one was in with us and the professionals, the other was left under the baleful eye of the receptionist. As it turned out though, bringing both boys Hudls and some sweets meant that neither caused any stress when out there alone.
Today we had the reports from the boys ADOS assessments - well, officially we did. We had seen the reports already, but the lady who sent them to us covered-up the fact that she had, and we respected that.
With J going in first Dr Z took the lead. She read us the concluding paragraph of the report, talked about the disastrous appointment just before Christmas, talked through the points noted at the various stages, and told us that J did indeed meet the diagnostic criteria for Autism. She talked about needing all the different reports to be ale to see where his difficulties lay, and she complemented him on his coping strategies. Then the play specialist who was also there (J, just to be confusing) talked with our J about what the diagnosis means, gave him the chance to ask questions, and made sure he was as OK as possible with things. We asked for support with J's anxieties, and have some information to read, a course to go on as parents, and details of some support organisations that can help.
Then we switched over, and it was M's turn. He was already a bit unsettled, fidgeting and curling up in the chair. J (play specialist) took the lead this time, and addressed M more directly - she asked him if he knew what was going on, and why we were there. He gave half answers, and she expanded on them. Then she gave a round up of the various reports / assessments, again reading concluding paragraphs to us all. M, we were told, was easier to diagnose, and again a diagnosis of Autism was given. I asked about ADHD as we'd filled in some assessment forms early on in the process. That took both Dr Z and J by surprise, but they recovered well :) Looking at the Connors form, and picking out relevant parts of other reports Dr Z agreed that there were significant indicators of ADHD, and so that was listed as a co-morbid condition. Again M was given the chance to ask anything he wanted, as were we, and then we said goodbye.
M didn't cope well with the goodbye - there were a few tears and he became very withdrawn, but that is just the way he reacts to things that feel like endings. Fairly soon after leaving he was fine.
At this stage we have a parenting course to go on - it wasn't pushed on us, just suggested, but there are sections that cover anxiety and anger management, both of which I feel would be helpful - and we have details of support organisations. The files with CAMHs are closed, but we can ask to be re-referred if we feel the need at any point.
I do feel a little as though we've been given the diagnosis, and then left on our own, but I guess now we need to see what this course offers. Dr Z said any further help for either boy would involve medication, and neither she nor we feel that is needed right now.
So, it's time to read, see what this course covers, see what the support organisations can offer, and research. I feel we've left things on good terms, if I find something CAMHs can offer, I have no qualms asking for it.
The real gain though is that knowledge. As a family we've bent around the boys pointy-bits for ever. We know them, and love them. We also know that working around the issues makes life easier and quieter! So for us, the knowledge is a reassurance - we've not done anything wrong, we've not compounded anything - but for those outside the immediate family, I hope this will make a big difference. M and J go to Cubs and Scouts. I know the organisation has policies in place for helping children with SEN, now we have back-up to insist the group follow those policies. Looking further ahead I think that M and J will need support if they want to take qualifications, this official diagnosis will help with that too. In the more immediate term, when we go places there can be more recognition of their individuality - the fact they need a little more time, a little more space, that some things are harder for them.
Lastly, but really it should be firstly, the self-knowledge that they are not less, wrong or broken, just different. Now we have that certainty we can help them understand their differences and hopefully understand their struggles too.
So, it may have taken forever to get here, but I kinda like this Wednesday . . .
It's generally every seven days or so.
You could even say Wednesday is a once-a-week sort of a thing.
This Wednesday, however, seems to have taken it's own sweet time.
In some ways this last week has taken forever, the time between knowing when the appointment was and getting there.
In other ways this Wednesday has taken 20 months - from first appointment to answers.
In yet more ways today has taken years - from first worries and wonderings to not just knowing, but hearing someone tell us "officially."
We had appointments at CAMHs today.
It was always going to be tricky, because we had consecutive appointments for J and M. Whilst one was in with us and the professionals, the other was left under the baleful eye of the receptionist. As it turned out though, bringing both boys Hudls and some sweets meant that neither caused any stress when out there alone.
Today we had the reports from the boys ADOS assessments - well, officially we did. We had seen the reports already, but the lady who sent them to us covered-up the fact that she had, and we respected that.
With J going in first Dr Z took the lead. She read us the concluding paragraph of the report, talked about the disastrous appointment just before Christmas, talked through the points noted at the various stages, and told us that J did indeed meet the diagnostic criteria for Autism. She talked about needing all the different reports to be ale to see where his difficulties lay, and she complemented him on his coping strategies. Then the play specialist who was also there (J, just to be confusing) talked with our J about what the diagnosis means, gave him the chance to ask questions, and made sure he was as OK as possible with things. We asked for support with J's anxieties, and have some information to read, a course to go on as parents, and details of some support organisations that can help.
Then we switched over, and it was M's turn. He was already a bit unsettled, fidgeting and curling up in the chair. J (play specialist) took the lead this time, and addressed M more directly - she asked him if he knew what was going on, and why we were there. He gave half answers, and she expanded on them. Then she gave a round up of the various reports / assessments, again reading concluding paragraphs to us all. M, we were told, was easier to diagnose, and again a diagnosis of Autism was given. I asked about ADHD as we'd filled in some assessment forms early on in the process. That took both Dr Z and J by surprise, but they recovered well :) Looking at the Connors form, and picking out relevant parts of other reports Dr Z agreed that there were significant indicators of ADHD, and so that was listed as a co-morbid condition. Again M was given the chance to ask anything he wanted, as were we, and then we said goodbye.
M didn't cope well with the goodbye - there were a few tears and he became very withdrawn, but that is just the way he reacts to things that feel like endings. Fairly soon after leaving he was fine.
At this stage we have a parenting course to go on - it wasn't pushed on us, just suggested, but there are sections that cover anxiety and anger management, both of which I feel would be helpful - and we have details of support organisations. The files with CAMHs are closed, but we can ask to be re-referred if we feel the need at any point.
I do feel a little as though we've been given the diagnosis, and then left on our own, but I guess now we need to see what this course offers. Dr Z said any further help for either boy would involve medication, and neither she nor we feel that is needed right now.
So, it's time to read, see what this course covers, see what the support organisations can offer, and research. I feel we've left things on good terms, if I find something CAMHs can offer, I have no qualms asking for it.
The real gain though is that knowledge. As a family we've bent around the boys pointy-bits for ever. We know them, and love them. We also know that working around the issues makes life easier and quieter! So for us, the knowledge is a reassurance - we've not done anything wrong, we've not compounded anything - but for those outside the immediate family, I hope this will make a big difference. M and J go to Cubs and Scouts. I know the organisation has policies in place for helping children with SEN, now we have back-up to insist the group follow those policies. Looking further ahead I think that M and J will need support if they want to take qualifications, this official diagnosis will help with that too. In the more immediate term, when we go places there can be more recognition of their individuality - the fact they need a little more time, a little more space, that some things are harder for them.
Lastly, but really it should be firstly, the self-knowledge that they are not less, wrong or broken, just different. Now we have that certainty we can help them understand their differences and hopefully understand their struggles too.
So, it may have taken forever to get here, but I kinda like this Wednesday . . .
Wednesday, 30 July 2014
Summer success and plans
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!
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, 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.
Saturday, 15 March 2014
The National Space Centre, Leicester
Well, we managed it :) As an almost last minute decision we decided to go to the National Space Centre in Leicester, a few weeks ago we went to a Live Action Role Playing (LARP) event in Leicester and saw some signs. We've often wondered about going, but it seemed a long way to go and an expensive place to get into.
But we've been at home for a long time - lots of tired people, ill people, bad weather and other things have meant we just haven't "gone out" for ages. Besides all that J is doing a project about our solar system, so it even works as an educationally appropriate event :)
As I said, it looks like an expensive day out for six people, but it didn't work out that way :) L counts as a child, even though he is 15 and taller than me, and my husband and I were allowed to go in as "personal assistants" for M and J, meaning we got in free.
From the outside it doesn't look particularly awesome. Tucked away on a housing estate, looking a bit more like an industrial unit than a museum, our initial impression was that maybe we had wasted the journey.
We needn't have worried though - the inside bares no resemblance to the exterior, and the trip was well worth it :)
The ground floor is divided into various galleries, there are a lot of interactive exhibits, and lots that you don't need to read extensively to understand. That last part was crucial as M and J scattered and A was able to be pretty self sufficient. There is enough detail in the info panels that L was intrigued and interested, but not so much he had trouble with word density.
M and J disappearing was a bit of an issue - there were lots of school parties around, and the number of bodies milling about made it hard to keep track of the more random members of the family. Thankfully everything is open plan enough that there were only two or three times we properly lost track of the boys, and even those were mercifully short.
The galleries were well planned, and themed so that everything made sense, the first was about space travel, the second about observing the skies, the third about the effect of various things on Earth (though that might have been a subsection of the last gallery) and the final one was about the planets individually.
A separate area followed the space race, with rockets and video clips, lost of time lines and ephemera to anchor the events in their time periods. Once the school parties had left there was a lot of time spent exploring what happened when, and L was surprised to trace the history of rockets back through WWII to Germany.
We also watched a planetarium show - We are Aliens - which was very well produced and I was hoping would deal with a few long running "debates" we have . . . Sadly, all it did was make M join the debate!
L has often complained that we are looking "out there" for life that resembles our own. The fact that the search focuses on looking for water and oxygen, and assumes a carbon based life form, seems ridiculous to him. He feels that different evolutionary pressures, a different atmosphere, a different beginning point could all lead to life that looks like nothing we've ever seen before. To a great extent I agree, but I also see that if we are going to "look" then the scientists need to start somewhere. So, the debate rumbles on. And on. I almost wish "we" would find carboniferous life out there just to stop the wittering!
So, in conclusion, we had fun :) with the exception of loosing a couple of children for brief spells, and a couple of meltdowns, the day worked very well. Much better than it looks from the outside and worth the money :)
But we've been at home for a long time - lots of tired people, ill people, bad weather and other things have meant we just haven't "gone out" for ages. Besides all that J is doing a project about our solar system, so it even works as an educationally appropriate event :)
As I said, it looks like an expensive day out for six people, but it didn't work out that way :) L counts as a child, even though he is 15 and taller than me, and my husband and I were allowed to go in as "personal assistants" for M and J, meaning we got in free.
From the outside it doesn't look particularly awesome. Tucked away on a housing estate, looking a bit more like an industrial unit than a museum, our initial impression was that maybe we had wasted the journey.
We needn't have worried though - the inside bares no resemblance to the exterior, and the trip was well worth it :)
The ground floor is divided into various galleries, there are a lot of interactive exhibits, and lots that you don't need to read extensively to understand. That last part was crucial as M and J scattered and A was able to be pretty self sufficient. There is enough detail in the info panels that L was intrigued and interested, but not so much he had trouble with word density.
M and J disappearing was a bit of an issue - there were lots of school parties around, and the number of bodies milling about made it hard to keep track of the more random members of the family. Thankfully everything is open plan enough that there were only two or three times we properly lost track of the boys, and even those were mercifully short.
The galleries were well planned, and themed so that everything made sense, the first was about space travel, the second about observing the skies, the third about the effect of various things on Earth (though that might have been a subsection of the last gallery) and the final one was about the planets individually.
A separate area followed the space race, with rockets and video clips, lost of time lines and ephemera to anchor the events in their time periods. Once the school parties had left there was a lot of time spent exploring what happened when, and L was surprised to trace the history of rockets back through WWII to Germany.
We also watched a planetarium show - We are Aliens - which was very well produced and I was hoping would deal with a few long running "debates" we have . . . Sadly, all it did was make M join the debate!
L has often complained that we are looking "out there" for life that resembles our own. The fact that the search focuses on looking for water and oxygen, and assumes a carbon based life form, seems ridiculous to him. He feels that different evolutionary pressures, a different atmosphere, a different beginning point could all lead to life that looks like nothing we've ever seen before. To a great extent I agree, but I also see that if we are going to "look" then the scientists need to start somewhere. So, the debate rumbles on. And on. I almost wish "we" would find carboniferous life out there just to stop the wittering!
So, in conclusion, we had fun :) with the exception of loosing a couple of children for brief spells, and a couple of meltdowns, the day worked very well. Much better than it looks from the outside and worth the money :)
Wednesday, 12 March 2014
Assessments, letters, conversations, and more about pee :)
It's been a while . . . there are lots of reasons for that - life has been crazy, but yet there hasn't been much to say, I've not been well, we've dived head first into exam prep, you know how it is, Life just sort of happened and here we are weeks after I last wrote anything.
Of the things that have happened, most have been pretty straight forward :
J: After the appointment with the community paediatrician to discuss frequent "little leaks" things have gone really well. J has taken to peeing standing up pretty confidently and that, combined with increased "shaking" has pretty much stopped daytime wet spots. He is also drinking more, and we are focusing on him drinking cranberry juice or water, and he is able to go for longer in between needing to go. Biggest of all we are having virtually NO night time issues! Previously he would have a small accident most nights, and a bigger one every few days. He *did* have a few nights of proper bed soaking just after we saw the doctor, but within a week those had stopped, and in the month since we've had one night time accident. Just one! Yay!
J also had an ultrasound on his kidneys and bladder, just to check that everything was fine, and it was.
So, *that* issue is pretty much sorted.
We had a response to the letter challenging the report of the last meeting we had at CAMHs (if you followed that!) It was really just a place-holding letter, saying they would look at their notes and be in touch. So that one is still on-going.
M: On the 4th of March M had an ADOS assessment. ADOS stands for Autism Diagnostic Observation Schedule. He was nervous going in, we couldn't go in with him, but when he came out he was very VERY bouncy. And really that's all I can tell you. The two ladies who did the assessment said they'd be in touch, but couldn't give us any idea of when. So now we wait some more.
L: Well, there are a few points for L. Firstly he is doing very well with his exam prep, he is getting his head around tricky maths concepts, and remembering more names for Biology too. He is working his way through the books, and we should be right on schedule for the exams. What's not so great is that we have gone WAY past my own maths knowledge. I got a C at school 20+ years ago. This stuff is a lot harder than I remember and quite a bit of it is new to me. Still, we're learning together I guess.
In a week and a bit L will be rejoining a local youth scheme that tries out various sports, they are kicking off with a roller disco, but last year they did canoeing, rock climbing and lazer tag (and a pile of other stuff before he joined.) He's nervous but looking forward to it. It's interesting seeing his attitude to sport (that it's pretty pointless) given that he is probably the most physically able of the bunch.
The most interesting point though was a random conversation. L asked me when we first heard of home education. I had to think quite hard, but remembered it was when I was having trouble nursing L. For some reason home ed was mentioned on an old Usenet group, though as it was a US based group I suspect it was called home schooling. So the conversation went on - when did we decide to try? I explained that we had considered home ed before L went to nursery, but decided to give school a go first. Things moved on and he wanted to know the reasons - that surprised me, I thought he knew, but he wasn't sure of the details. He knew he wasn't happy at nursery but couldn't remember why - so we talked about those bits.
L didn't like nursery, he hadn't been keen since a week or so into things, but it just got worse and worse. He didn't get stressed at being left, he just didn't want to be there at all. He remembers doing "just enough" so they would let him go off, and that seems to relate to the fact that this particular pre-school nursery only recorded a child as being able to do something if the child did it when they were being assessed. So once or twice a week they'd get each child to sit with their specific worker and do stuff. L seems to have disliked performing (!) and so did as little as he could. That will be why when he left - 8 months after starting - the nursery staff still thought he could only recognise the numbers 1 - 3, but at home he was working with 0-12 . . .
There were lots of other things, of course, specific incidents that stayed with me. I mentioned one about drawing. L - being about 3 - had done a drawing that was all scribble an enthusiasm, not so much actual drawing. He'd shown it to one of the workers and she had said something along the lines of "Oh what a lovely XXX" - I never did find out what she thought it was. Whatever she said though was NOT what L had drawn. On the way home he ripped up the picture and threw it away. He got very angry that he didn't draw what he had meant to draw. And that was it. No more drawing from L. As we were talking I could see that he hadn't entirely remembered the incident, so I asked him what he did remember. He said he remembers being told his drawing was rubbish, remembers enjoying drawing before that and not feeling confident enough to draw after. He remembers trying to draw afterwards and just not being able to because he knew it would be wrong. So he remembers the lingering emotional effects even now - 11 or more years later. He feels that he would love to draw, but that he has lost years of practise and training muscles to do what he wants. And it makes him sad. Very sad.
We've talked it through, and he's going to try a handwriting program that is actually designed to train the hand, brain and proprioceptive system at the same time. I hope it isn't too late, but I guess we'll see eventually :)
Lastly we have A. She is bumbling along, mostly happily but every now and then extremely stroppily. She has just learnt to ride her bike without stabilisers (still a bit wobbly though!) She can read but is very reluctant to, she can write and is wanting to more and more, and she loves to draw and create. Not much more to say really!
Maybe tomorrow I'll have a visit to tell you about - if all goes according to plan!
Of the things that have happened, most have been pretty straight forward :
J: After the appointment with the community paediatrician to discuss frequent "little leaks" things have gone really well. J has taken to peeing standing up pretty confidently and that, combined with increased "shaking" has pretty much stopped daytime wet spots. He is also drinking more, and we are focusing on him drinking cranberry juice or water, and he is able to go for longer in between needing to go. Biggest of all we are having virtually NO night time issues! Previously he would have a small accident most nights, and a bigger one every few days. He *did* have a few nights of proper bed soaking just after we saw the doctor, but within a week those had stopped, and in the month since we've had one night time accident. Just one! Yay!
J also had an ultrasound on his kidneys and bladder, just to check that everything was fine, and it was.
So, *that* issue is pretty much sorted.
We had a response to the letter challenging the report of the last meeting we had at CAMHs (if you followed that!) It was really just a place-holding letter, saying they would look at their notes and be in touch. So that one is still on-going.
M: On the 4th of March M had an ADOS assessment. ADOS stands for Autism Diagnostic Observation Schedule. He was nervous going in, we couldn't go in with him, but when he came out he was very VERY bouncy. And really that's all I can tell you. The two ladies who did the assessment said they'd be in touch, but couldn't give us any idea of when. So now we wait some more.
L: Well, there are a few points for L. Firstly he is doing very well with his exam prep, he is getting his head around tricky maths concepts, and remembering more names for Biology too. He is working his way through the books, and we should be right on schedule for the exams. What's not so great is that we have gone WAY past my own maths knowledge. I got a C at school 20+ years ago. This stuff is a lot harder than I remember and quite a bit of it is new to me. Still, we're learning together I guess.
In a week and a bit L will be rejoining a local youth scheme that tries out various sports, they are kicking off with a roller disco, but last year they did canoeing, rock climbing and lazer tag (and a pile of other stuff before he joined.) He's nervous but looking forward to it. It's interesting seeing his attitude to sport (that it's pretty pointless) given that he is probably the most physically able of the bunch.
The most interesting point though was a random conversation. L asked me when we first heard of home education. I had to think quite hard, but remembered it was when I was having trouble nursing L. For some reason home ed was mentioned on an old Usenet group, though as it was a US based group I suspect it was called home schooling. So the conversation went on - when did we decide to try? I explained that we had considered home ed before L went to nursery, but decided to give school a go first. Things moved on and he wanted to know the reasons - that surprised me, I thought he knew, but he wasn't sure of the details. He knew he wasn't happy at nursery but couldn't remember why - so we talked about those bits.
L didn't like nursery, he hadn't been keen since a week or so into things, but it just got worse and worse. He didn't get stressed at being left, he just didn't want to be there at all. He remembers doing "just enough" so they would let him go off, and that seems to relate to the fact that this particular pre-school nursery only recorded a child as being able to do something if the child did it when they were being assessed. So once or twice a week they'd get each child to sit with their specific worker and do stuff. L seems to have disliked performing (!) and so did as little as he could. That will be why when he left - 8 months after starting - the nursery staff still thought he could only recognise the numbers 1 - 3, but at home he was working with 0-12 . . .
There were lots of other things, of course, specific incidents that stayed with me. I mentioned one about drawing. L - being about 3 - had done a drawing that was all scribble an enthusiasm, not so much actual drawing. He'd shown it to one of the workers and she had said something along the lines of "Oh what a lovely XXX" - I never did find out what she thought it was. Whatever she said though was NOT what L had drawn. On the way home he ripped up the picture and threw it away. He got very angry that he didn't draw what he had meant to draw. And that was it. No more drawing from L. As we were talking I could see that he hadn't entirely remembered the incident, so I asked him what he did remember. He said he remembers being told his drawing was rubbish, remembers enjoying drawing before that and not feeling confident enough to draw after. He remembers trying to draw afterwards and just not being able to because he knew it would be wrong. So he remembers the lingering emotional effects even now - 11 or more years later. He feels that he would love to draw, but that he has lost years of practise and training muscles to do what he wants. And it makes him sad. Very sad.
We've talked it through, and he's going to try a handwriting program that is actually designed to train the hand, brain and proprioceptive system at the same time. I hope it isn't too late, but I guess we'll see eventually :)
Lastly we have A. She is bumbling along, mostly happily but every now and then extremely stroppily. She has just learnt to ride her bike without stabilisers (still a bit wobbly though!) She can read but is very reluctant to, she can write and is wanting to more and more, and she loves to draw and create. Not much more to say really!
Maybe tomorrow I'll have a visit to tell you about - if all goes according to plan!
Tuesday, 18 February 2014
Projects abound!
Now we've been back for a while, life has resumed in full flow.
Of course that means barely a moment to sit and think, let alone write or plan . . .
Before we went away I tidied up a lot of our resources, and took a lot of books off our "downstairs bookshelf". Mostly the books were pre-readers, or very early reading schemes - somehow we seem to have collected quite a few books from random reading schemes. Sometimes I've actually bought them, a large chunk came from my mothers school, some were gifts from well meaning relatives. Now I have four children who can read (!) we don't need the "A is for . . ." books. So they all migrated to the loft. They took with them a whole pile of board books, for very similar reasons. That made space on some of the "upstairs bookshelves" for story books that had been downstairs. That meant I had space on the shelves for some more of the educational resources I have collected - we have lots of project packs, work books, and reference books. Until now most of the resources have been hidden away under the stairs.
As I got them out I reminded myself just how many enticing things we had, and as the younger three came and got in the way they all spotted things they wanted to explore. I've decided that having these packs isn't enough, we actually need to *use* them!
So I filled a shelf with books and packs that were about the right level for one or other of the younger three, and let them browse.
A decided that she liked the look of a pack I'd sent off for in 2003 from the Cats Protection League, and we're three or four sessions into it. We have another from Battersea Dog and Cat home, sent off for years ago, which we may or may not move onto, depending on how enthusiastic she is.
J wants to finish off his Solar System lap book, then move onto a Mini beasts pack we got from our local scrap store. He was fascinated to see how much his writing has improved since we began the lap book in November.
M has started the First class project pack from iChild - down loadable here, though we have a hard copy. This one is a bit odd - it doesn't go into enough detail for M, so he's asked to learn about several things as a result - notably the British Empire, the second World War, and the Industrial revolution. I'm pretty sure we have several books that cover those, so I guess that we're lining up future projects there :)
I'm torn now though - is this Autonomy? I think so, because all three asked to do their respective projects, I didn't suggest them, or even ask them to choose one. I guess it's not unschooling though, because all of these packs are designed to be used in a classroom setting, so it's very much a case of "Introduce, discuss, activity, conclude." For M that's not enough information, he wants to go off at a tangent, to follow his interests and talk about *everything* - in that he reminds me of L - for A the structure is novel, she is focusing on stories, and whilst her writing is still emerging, she is enthusiastic to get her thoughts down on paper - much more so than any of the boys at her age. J likes the structure, sticks to the facts and the task at hand, wants to do it, and get it done well, but there is no distracting, no related conversation, no tangents. He is very much about getting down to business and then getting out of the kitchen. I was a bit surprised that he wanted to do a project, but he did, he does, and we'll see if it gets completed.
There are lots more books and packs under the stairs, lots more on the shelf. Will this be a one off? Or is it a bit like strewing - a Montesorian principle involving providing interesting / intriguing activities and leaving them to be discovered rather than imposing on or inviting in the child. I know strewing works with J and A, especially with art supplies, but it has never worked for L or M. With both of them if I want to interest them I either need to say "hey, look at this . . . " or start doing it myself, where they can see and then be prepared to work along side them.
So, at the moment we're being bookish. I wonder if that is in reaction to a cold wet winter, outside looks so foreboding, and forbidding, and even ASD kids can only spend so long buried in Minecraft before they long for something more.
Of course that means barely a moment to sit and think, let alone write or plan . . .
Before we went away I tidied up a lot of our resources, and took a lot of books off our "downstairs bookshelf". Mostly the books were pre-readers, or very early reading schemes - somehow we seem to have collected quite a few books from random reading schemes. Sometimes I've actually bought them, a large chunk came from my mothers school, some were gifts from well meaning relatives. Now I have four children who can read (!) we don't need the "A is for . . ." books. So they all migrated to the loft. They took with them a whole pile of board books, for very similar reasons. That made space on some of the "upstairs bookshelves" for story books that had been downstairs. That meant I had space on the shelves for some more of the educational resources I have collected - we have lots of project packs, work books, and reference books. Until now most of the resources have been hidden away under the stairs.
As I got them out I reminded myself just how many enticing things we had, and as the younger three came and got in the way they all spotted things they wanted to explore. I've decided that having these packs isn't enough, we actually need to *use* them!
So I filled a shelf with books and packs that were about the right level for one or other of the younger three, and let them browse.
A decided that she liked the look of a pack I'd sent off for in 2003 from the Cats Protection League, and we're three or four sessions into it. We have another from Battersea Dog and Cat home, sent off for years ago, which we may or may not move onto, depending on how enthusiastic she is.
J wants to finish off his Solar System lap book, then move onto a Mini beasts pack we got from our local scrap store. He was fascinated to see how much his writing has improved since we began the lap book in November.
M has started the First class project pack from iChild - down loadable here, though we have a hard copy. This one is a bit odd - it doesn't go into enough detail for M, so he's asked to learn about several things as a result - notably the British Empire, the second World War, and the Industrial revolution. I'm pretty sure we have several books that cover those, so I guess that we're lining up future projects there :)
I'm torn now though - is this Autonomy? I think so, because all three asked to do their respective projects, I didn't suggest them, or even ask them to choose one. I guess it's not unschooling though, because all of these packs are designed to be used in a classroom setting, so it's very much a case of "Introduce, discuss, activity, conclude." For M that's not enough information, he wants to go off at a tangent, to follow his interests and talk about *everything* - in that he reminds me of L - for A the structure is novel, she is focusing on stories, and whilst her writing is still emerging, she is enthusiastic to get her thoughts down on paper - much more so than any of the boys at her age. J likes the structure, sticks to the facts and the task at hand, wants to do it, and get it done well, but there is no distracting, no related conversation, no tangents. He is very much about getting down to business and then getting out of the kitchen. I was a bit surprised that he wanted to do a project, but he did, he does, and we'll see if it gets completed.
There are lots more books and packs under the stairs, lots more on the shelf. Will this be a one off? Or is it a bit like strewing - a Montesorian principle involving providing interesting / intriguing activities and leaving them to be discovered rather than imposing on or inviting in the child. I know strewing works with J and A, especially with art supplies, but it has never worked for L or M. With both of them if I want to interest them I either need to say "hey, look at this . . . " or start doing it myself, where they can see and then be prepared to work along side them.
So, at the moment we're being bookish. I wonder if that is in reaction to a cold wet winter, outside looks so foreboding, and forbidding, and even ASD kids can only spend so long buried in Minecraft before they long for something more.
Saturday, 8 February 2014
Setting the record straight, and talking about pee!
So, as well as our holiday there have been a couple of developments for the boys.
Firstly, that letter . . .
Just before Christmas we had an appointment for J with the Neurodevelopment clinic, discussing our concerns (again) and working out the next step. I wrote about it here.
A few weeks later we got the write-up of the meeting. Now, whilst the meeting was infuriating - a mixture of them minimising what I was saying and obsessing over small things - the report of it was so much worse.
The report had factual errors - it listed J as having had "a few surgeries to fit grommets", he has never had poor hearing, we didn't discuss surgery or grommets . . . It went on to state that J was cord wrapped at birth - again factually incorrect, he had a true knot in the cord, which as it tightened cut off his blood supply and stopped his heart. Cord wrapping is not even close. There were others too, but you don't need me to go on and on.
Along side this there were points that were minimised - J gets stressed in the car if we go more than about 40 mph, go around sharp bends, over bridges or flyovers, overtake, drive in the outside lane or go down a steep hill. I listed all of those points in the meeting, but it was recorded as "J gets upset when driving at excessive speed." I told them that J will not eat meat with any texture, will not try new foods or eat cooked vegetables. This was recorded as "J loves raw vegetables".
Finally there were a couple of points that got whole paragraphs that they just didn't rate. J struggles to play hide and seek - this comes up maybe twice a year! - he finds it hard to stay hidden if the seeker is close, and will often leap out and say something like "here I am" or "You missed me!". Really, it's not that huge a thing.
So, after fuming, reading and rereading the letter we decided it just couldn't be allowed to stand unchallenged. There was very little in it that felt like our J, and if it stayed on his file as it was then anyone reading it would get a totally incorrect picture of him.
It was time to sit, be calm, and dissect the report. I went through, sentence by sentence, and underlined all the parts that needed work. Then I wrote a firm but polite letter, thanking the team but telling them I was disappointed to see so many errors. I told them where to look (ie paragraph one, line one) quoted what was incorrect, and then told them the correct version. My letter ran to three pages . . .
At no point was I rude, insulting, or aggressive, I simply took the approach that there had been a series of mistakes that needed to be rectified in order to keep the file accurate. I really did feel like being rude though!
We haven't had a proper reply yet - the doctor is on annual leave - so I don't know how much of it they will accept, or this is the beginning of a long running dispute, but I'll keep you informed.
We also had an appointment for J at the urology clinic. J wets the bed, and has tiny accidents in the day. We spent a long time talking about things with a lovely doctor, and J has been given some "homework". He needs to drink a lot more - about 2 litres a day - to pee standing up, and to make sure he shakes . . .
It was a pretty embarrassing time for both J and I, spending an hour talking about pee isn't my idea of fun, but the doc was very straight forward, very helpful, and gave us a lot to work with.
It looks like J's bladder is a bit irritated, due to him not drinking much, so he has cranberry juice to help soothe it. It is also possible that because he has never drunk enough his bladder hasn't "learnt" to hold much, and gets stressed easily.
So for the last two days we've been watching J, and encouraging him to drink more. Yesterday he drank more than ever, and just about managed to get to 1 litre. We have quite a lot of work to do there it seems.
And, finally, we got the date for M's ADOS assessment - 4th March - not too far away. I expect that we will get the appointment for J soon as well.
So, there we have it. Bullets bitten, letters sent, pee discussed and appointments made. A busy few weeks really!
Firstly, that letter . . .
Just before Christmas we had an appointment for J with the Neurodevelopment clinic, discussing our concerns (again) and working out the next step. I wrote about it here.
A few weeks later we got the write-up of the meeting. Now, whilst the meeting was infuriating - a mixture of them minimising what I was saying and obsessing over small things - the report of it was so much worse.
The report had factual errors - it listed J as having had "a few surgeries to fit grommets", he has never had poor hearing, we didn't discuss surgery or grommets . . . It went on to state that J was cord wrapped at birth - again factually incorrect, he had a true knot in the cord, which as it tightened cut off his blood supply and stopped his heart. Cord wrapping is not even close. There were others too, but you don't need me to go on and on.
Along side this there were points that were minimised - J gets stressed in the car if we go more than about 40 mph, go around sharp bends, over bridges or flyovers, overtake, drive in the outside lane or go down a steep hill. I listed all of those points in the meeting, but it was recorded as "J gets upset when driving at excessive speed." I told them that J will not eat meat with any texture, will not try new foods or eat cooked vegetables. This was recorded as "J loves raw vegetables".
Finally there were a couple of points that got whole paragraphs that they just didn't rate. J struggles to play hide and seek - this comes up maybe twice a year! - he finds it hard to stay hidden if the seeker is close, and will often leap out and say something like "here I am" or "You missed me!". Really, it's not that huge a thing.
So, after fuming, reading and rereading the letter we decided it just couldn't be allowed to stand unchallenged. There was very little in it that felt like our J, and if it stayed on his file as it was then anyone reading it would get a totally incorrect picture of him.
It was time to sit, be calm, and dissect the report. I went through, sentence by sentence, and underlined all the parts that needed work. Then I wrote a firm but polite letter, thanking the team but telling them I was disappointed to see so many errors. I told them where to look (ie paragraph one, line one) quoted what was incorrect, and then told them the correct version. My letter ran to three pages . . .
At no point was I rude, insulting, or aggressive, I simply took the approach that there had been a series of mistakes that needed to be rectified in order to keep the file accurate. I really did feel like being rude though!
We haven't had a proper reply yet - the doctor is on annual leave - so I don't know how much of it they will accept, or this is the beginning of a long running dispute, but I'll keep you informed.
We also had an appointment for J at the urology clinic. J wets the bed, and has tiny accidents in the day. We spent a long time talking about things with a lovely doctor, and J has been given some "homework". He needs to drink a lot more - about 2 litres a day - to pee standing up, and to make sure he shakes . . .
It was a pretty embarrassing time for both J and I, spending an hour talking about pee isn't my idea of fun, but the doc was very straight forward, very helpful, and gave us a lot to work with.
It looks like J's bladder is a bit irritated, due to him not drinking much, so he has cranberry juice to help soothe it. It is also possible that because he has never drunk enough his bladder hasn't "learnt" to hold much, and gets stressed easily.
So for the last two days we've been watching J, and encouraging him to drink more. Yesterday he drank more than ever, and just about managed to get to 1 litre. We have quite a lot of work to do there it seems.
And, finally, we got the date for M's ADOS assessment - 4th March - not too far away. I expect that we will get the appointment for J soon as well.
So, there we have it. Bullets bitten, letters sent, pee discussed and appointments made. A busy few weeks really!
Wednesday, 5 February 2014
Home again, home again, Jiggety jig
Well, we're back :) Time to get life back on track and re-embrace our "normal".
Last week we were at one of our favourite places - ConCeption, a gaming convention on the south coast. It was awesome :) As with everything in our lives, this particular chunk of awesomness was coloured by the children's quirks and additional needs, but not always in a negative way.
When we go away M and J feel a need to plan. That's pretty normal, but M in particular takes normal and magnifies it about 100X. M's planning started back in October, and he has been telling friends about what would happen for a very long time. In order to try and get this under control at the very start of January we wrote lists - what they both wanted to pack, what they wanted to play, even (in J's case) what they would wear on the way down. Since there was some writing involved A decided to hop onto the band waggon - although her list was much shorter, and didn't actually get looked at once she had written it.
When it came to the time we wanted to pack, this was the easiest year yet. We have now fully embraced M's sensory issues, so most of his clothes are ones he is happy to wear (this does change depending on his stress levels, but now we never buy something for him without his trying it on and approving it.) So I was able to say things like "six pairs of trousers! Go!" and they did! It was a bit chaotic, lots of clothes everywhere, I had to go through and fold things, quietly checking for holes in knees of trousers as I went, but all four children managed to sort things themselves.
The biggest issue we had was space - with six of us, a weeks clothing, and *lots* of games, the car felt far too small. There was quite a bit of negotiating about which games would be taken, which could fit into the same box and how we could keep them from getting damaged en route. In the end we took far more games than we played, but far less than M wanted to.
For the first time in years not only Uncle N, but also Uncle M were there. Uncle N always comes, staying in the same lodge as us, but having another adult about really changed the dynamic, and made for an almost stress free week :)
This is the perfect convention for us - for the first half there are very few children older than about 3 around, and those that are there we have known all their lives. We often have the pool to ourselves, and the soft play is similarly exclusive. That means that M, J and A get to relax when it's not at all busy, they get to do things without having to wait or take turns, they get to be in control. From the Friday night onwards more children arrive - again mostly ones we have known forever - and the kids play well in groups, having already explored and done most of the things they wanted to do. It's very interesting to see that all four of the offspring slot back into the social groups naturally, they know the other children well enough despite only spending one week of the year together, there is a tolerance of each others differences and very rarely any upsets at all. We had no tears / complaints / grumps this year, not from our guys or any of the other children. It really is a very relaxing place to be.
J and A played their first convention games that were not run by one of "us" this year - they played the Pathfinder Kids Track - and they both loved it. There were two games, each lasted four hours, but had several breaks. The guys running it were well prepared, very enthusiastic, and there were three of them to the two kids :) It was great to see both of the littlies really getting into things, and one way or another they both played every day we were there :)
M and L played standard Pathfinder games with their dad and Uncle N. They both cope fairly well at a table with random adults, and had a blast.
For M gaming like this is perfect - there are rules, which give his socialisation shape and form, he knows his character well, which makes him relax and feel able to contribute, and he is actually a very good tactician, which makes him an asset to the table. L is shyer, finds it harder to speak up to strangers, but once he relaxes he shines. Playing games like this helps both boys with reading / maths / writing, because there is a need to do all of those things quickly and independently. It's good practise, even though neither of them are learning anything new.
L sometimes finds M too much (he's not alone there, TBH) so we organised a game with Uncle M running, and L, Uncle N, My husband and I playing. L came out of his shell, and really enjoyed himself. It helps that Uncle M is a really good GM, and that we were all having fun too. One of those games where everyone hits the perfect notes and it just takes off.
On the Saturday morning M played a solo game with uncle N, using the Savage Worlds rules set, then in the afternoon I ran a game called "Little Wizards" aimed at children, and it was chaotic! I'll write up the story and post it later. J and A both played, as did 6 other children.
On the Sunday I ran an interactive game (again for children. Do you see a pattern!) These games are generally called LRP's, and instead of saying "my character will do XX" you go and do it. Mostly they are based around "talky" situations, and it is a great opportunity to get into a character and have fun. Again J and A played this whilst the other two played Pathfinder with their dad and uncle.
Sunday afternoon J played a very old game called Star Wars D6, based in the Star Wars universe, with a very simple rules mechanic, I played with him as uncle N ran the game. It took him a little while to settle, but he had a blast.
At some point M bought a new game - Cosmic patrol - and read most of the rule book in the down time between games. As with most RPG rule books this one was pretty long - novel sized - and needed to be concentrated on. M was his usual dedicated (obsessive?) self, and determined to read it before we left, I don't think I could have convinced him to read that much, even with the best novels we have here.
Monday morning came around too soon, and we had to say goodbye not only to the uncles, but also to the holiday park. Both M and J cried, but that was to be expected, they hate leaving places / people.
On the way home we stopped at Marwel Zoo, but that is another post (with pictures!)
There is so much more to say, but I'll have to cogitate on it a bit longer, however -
we are back.
Life resumes.
J is off to the hospital tomorrow for an outpatients appointment . . .
Last week we were at one of our favourite places - ConCeption, a gaming convention on the south coast. It was awesome :) As with everything in our lives, this particular chunk of awesomness was coloured by the children's quirks and additional needs, but not always in a negative way.
When we go away M and J feel a need to plan. That's pretty normal, but M in particular takes normal and magnifies it about 100X. M's planning started back in October, and he has been telling friends about what would happen for a very long time. In order to try and get this under control at the very start of January we wrote lists - what they both wanted to pack, what they wanted to play, even (in J's case) what they would wear on the way down. Since there was some writing involved A decided to hop onto the band waggon - although her list was much shorter, and didn't actually get looked at once she had written it.
When it came to the time we wanted to pack, this was the easiest year yet. We have now fully embraced M's sensory issues, so most of his clothes are ones he is happy to wear (this does change depending on his stress levels, but now we never buy something for him without his trying it on and approving it.) So I was able to say things like "six pairs of trousers! Go!" and they did! It was a bit chaotic, lots of clothes everywhere, I had to go through and fold things, quietly checking for holes in knees of trousers as I went, but all four children managed to sort things themselves.
The biggest issue we had was space - with six of us, a weeks clothing, and *lots* of games, the car felt far too small. There was quite a bit of negotiating about which games would be taken, which could fit into the same box and how we could keep them from getting damaged en route. In the end we took far more games than we played, but far less than M wanted to.
For the first time in years not only Uncle N, but also Uncle M were there. Uncle N always comes, staying in the same lodge as us, but having another adult about really changed the dynamic, and made for an almost stress free week :)
This is the perfect convention for us - for the first half there are very few children older than about 3 around, and those that are there we have known all their lives. We often have the pool to ourselves, and the soft play is similarly exclusive. That means that M, J and A get to relax when it's not at all busy, they get to do things without having to wait or take turns, they get to be in control. From the Friday night onwards more children arrive - again mostly ones we have known forever - and the kids play well in groups, having already explored and done most of the things they wanted to do. It's very interesting to see that all four of the offspring slot back into the social groups naturally, they know the other children well enough despite only spending one week of the year together, there is a tolerance of each others differences and very rarely any upsets at all. We had no tears / complaints / grumps this year, not from our guys or any of the other children. It really is a very relaxing place to be.
J and A played their first convention games that were not run by one of "us" this year - they played the Pathfinder Kids Track - and they both loved it. There were two games, each lasted four hours, but had several breaks. The guys running it were well prepared, very enthusiastic, and there were three of them to the two kids :) It was great to see both of the littlies really getting into things, and one way or another they both played every day we were there :)
M and L played standard Pathfinder games with their dad and Uncle N. They both cope fairly well at a table with random adults, and had a blast.
For M gaming like this is perfect - there are rules, which give his socialisation shape and form, he knows his character well, which makes him relax and feel able to contribute, and he is actually a very good tactician, which makes him an asset to the table. L is shyer, finds it harder to speak up to strangers, but once he relaxes he shines. Playing games like this helps both boys with reading / maths / writing, because there is a need to do all of those things quickly and independently. It's good practise, even though neither of them are learning anything new.
L sometimes finds M too much (he's not alone there, TBH) so we organised a game with Uncle M running, and L, Uncle N, My husband and I playing. L came out of his shell, and really enjoyed himself. It helps that Uncle M is a really good GM, and that we were all having fun too. One of those games where everyone hits the perfect notes and it just takes off.
On the Saturday morning M played a solo game with uncle N, using the Savage Worlds rules set, then in the afternoon I ran a game called "Little Wizards" aimed at children, and it was chaotic! I'll write up the story and post it later. J and A both played, as did 6 other children.
On the Sunday I ran an interactive game (again for children. Do you see a pattern!) These games are generally called LRP's, and instead of saying "my character will do XX" you go and do it. Mostly they are based around "talky" situations, and it is a great opportunity to get into a character and have fun. Again J and A played this whilst the other two played Pathfinder with their dad and uncle.
Sunday afternoon J played a very old game called Star Wars D6, based in the Star Wars universe, with a very simple rules mechanic, I played with him as uncle N ran the game. It took him a little while to settle, but he had a blast.
At some point M bought a new game - Cosmic patrol - and read most of the rule book in the down time between games. As with most RPG rule books this one was pretty long - novel sized - and needed to be concentrated on. M was his usual dedicated (obsessive?) self, and determined to read it before we left, I don't think I could have convinced him to read that much, even with the best novels we have here.
Monday morning came around too soon, and we had to say goodbye not only to the uncles, but also to the holiday park. Both M and J cried, but that was to be expected, they hate leaving places / people.
On the way home we stopped at Marwel Zoo, but that is another post (with pictures!)
There is so much more to say, but I'll have to cogitate on it a bit longer, however -
we are back.
Life resumes.
J is off to the hospital tomorrow for an outpatients appointment . . .
Friday, 20 December 2013
Not what I was hoping for
I've been trying to write this post mentally for a while, but I still can't quite get things straight in my head.
Sorry if it's a bit jumbled!
So, on Wednesday J and I went to CAMHs for an appointment with the Neuro developmental team. We saw Dr Z and V - V was one of the team that did J's group assessments. We were referred to the team as a result of the group assessment. Unfortunately my husband couldn't be with us as he had a prior commitment, and rescheduling would have pushed things back by two months at least.
After the group assessments we felt that the team had seen the happy side of J, and a few of his issues, but not "the real J", so this was the opportunity to try and give a better, clearer picture of things. My husband and I spent some time talking through points I needed to cover, his observations and my own, so that both our perspectives could be heard - I went into the appointment with a long list of difficulties, ready to cover as much as I could.
The appointment didn't go so well.
For the first time at one of these sessions I felt like I wasn't being listened to, I tried to convey how things were, but it just didn't seem to work. J has a lot of difficult behaviours, a lot of issues, but somehow each time I brought something up it felt like it was glossed over or it turned into me trying to justify why or how this was "worse" than a "normal" 9 year old.
It really didn't help that J was minimising things, saying "I don't do that", or trying to change the subject at various points. He also got very upset - tearful rather than shouting - and that distracted everyone in the room. We all tried to get him to go to the playroom, or to look at the fish, but he wanted to stay. Dr Z was very concerned about J's emotional state - maybe that is why she stopped listening?
We talked through pregnancy / birth / babyhood / toddler years / current issues, then J and I went out to the waiting room and Dr Z and V discussed what they had seen and heard.
We were called back about five minutes later, by which time J was smiling and giggling. He can be very mercurial - from joy to misery in the blink of an eye.
Whilst they can see some issues, they are unsure of any diagnosis - apparently the clusters of issues are not right for ASD in their eyes. They want to do an ADOS and then look at all the information they have again, and work out how to proceed.
Apparently the fact that J likes to be tickled makes AS unlikely, and there are other dissenting issues too.
When they said that I was stunned.
I asked them to ask me about things they had expected to see that they felt were absent - because I'm worried I left out details, it is so hard to cover *everything* in an hour - but they were unwilling to do that.
I told them that all the follow up reading I had done at the paediatricians suggestion led me to the conclusion that it is an ASD.
I asked them what else they thought it could be - they were unwilling to give *any* real reply to that.
I told them that I felt unable to help J, and that I was unwilling to go through this process and be left with a negative diagnosis and no help, which they commiserated with and gave non-committal "we'll see what happens after the ADOS" answers to.
Dr Z did say that J's emotional imbalance and anxieties are a concern, so perhaps it's good that he got so upset. But that is small comfort really.
So, now, we have ANOTHER wait - probably two or three months - for the ADOS. We will have to hope that the ADOS is accurate, and gives them the missing pieces, but I'm not convinced it will. J has done one before, and it's an environment he thrives in - last time it was three adults and him in a quiet dimly lit room, no pressure to engage or finish tasks, and just moving from one thing to another very quickly. I hope the protocol for a nearly 10 year old is different to that for a 6 year old!
Then, after that? It depends on how things turn out. I am firmly convinced J is Autistic - I have read extensively about the difficulties and issues, I've networked with other parents and found so many "yeah, J does that too" moments, spoken to other people who know J and are experienced in the field, and every time the response is "yes." It seems so self evident!
So, if the ADOS brings clarity, then awesome! If not, then we need to see what CAMHs suggest next, but I will not go quietly. If they think "it" is something else, then I will learn about this something else and if it doesn't fit I will fight for the right diagnosis. If they think there is nothing, then I will fight for another set of observations, a different team to assess him, because the issues are there to be seen, they really are!
A while ago I heard the term "warrior mums" - for those who fight relentlessly on behalf of their children. Sometimes we need to fight for education, for allowances to be made, for services to be provided, for the right diagnosis.
J needs this, and I will not let him down.
I'm ready to fight. Hard.
Sorry if it's a bit jumbled!
So, on Wednesday J and I went to CAMHs for an appointment with the Neuro developmental team. We saw Dr Z and V - V was one of the team that did J's group assessments. We were referred to the team as a result of the group assessment. Unfortunately my husband couldn't be with us as he had a prior commitment, and rescheduling would have pushed things back by two months at least.
After the group assessments we felt that the team had seen the happy side of J, and a few of his issues, but not "the real J", so this was the opportunity to try and give a better, clearer picture of things. My husband and I spent some time talking through points I needed to cover, his observations and my own, so that both our perspectives could be heard - I went into the appointment with a long list of difficulties, ready to cover as much as I could.
The appointment didn't go so well.
For the first time at one of these sessions I felt like I wasn't being listened to, I tried to convey how things were, but it just didn't seem to work. J has a lot of difficult behaviours, a lot of issues, but somehow each time I brought something up it felt like it was glossed over or it turned into me trying to justify why or how this was "worse" than a "normal" 9 year old.
It really didn't help that J was minimising things, saying "I don't do that", or trying to change the subject at various points. He also got very upset - tearful rather than shouting - and that distracted everyone in the room. We all tried to get him to go to the playroom, or to look at the fish, but he wanted to stay. Dr Z was very concerned about J's emotional state - maybe that is why she stopped listening?
We talked through pregnancy / birth / babyhood / toddler years / current issues, then J and I went out to the waiting room and Dr Z and V discussed what they had seen and heard.
We were called back about five minutes later, by which time J was smiling and giggling. He can be very mercurial - from joy to misery in the blink of an eye.
Whilst they can see some issues, they are unsure of any diagnosis - apparently the clusters of issues are not right for ASD in their eyes. They want to do an ADOS and then look at all the information they have again, and work out how to proceed.
Apparently the fact that J likes to be tickled makes AS unlikely, and there are other dissenting issues too.
When they said that I was stunned.
I asked them to ask me about things they had expected to see that they felt were absent - because I'm worried I left out details, it is so hard to cover *everything* in an hour - but they were unwilling to do that.
I told them that all the follow up reading I had done at the paediatricians suggestion led me to the conclusion that it is an ASD.
I asked them what else they thought it could be - they were unwilling to give *any* real reply to that.
I told them that I felt unable to help J, and that I was unwilling to go through this process and be left with a negative diagnosis and no help, which they commiserated with and gave non-committal "we'll see what happens after the ADOS" answers to.
Dr Z did say that J's emotional imbalance and anxieties are a concern, so perhaps it's good that he got so upset. But that is small comfort really.
So, now, we have ANOTHER wait - probably two or three months - for the ADOS. We will have to hope that the ADOS is accurate, and gives them the missing pieces, but I'm not convinced it will. J has done one before, and it's an environment he thrives in - last time it was three adults and him in a quiet dimly lit room, no pressure to engage or finish tasks, and just moving from one thing to another very quickly. I hope the protocol for a nearly 10 year old is different to that for a 6 year old!
Then, after that? It depends on how things turn out. I am firmly convinced J is Autistic - I have read extensively about the difficulties and issues, I've networked with other parents and found so many "yeah, J does that too" moments, spoken to other people who know J and are experienced in the field, and every time the response is "yes." It seems so self evident!
So, if the ADOS brings clarity, then awesome! If not, then we need to see what CAMHs suggest next, but I will not go quietly. If they think "it" is something else, then I will learn about this something else and if it doesn't fit I will fight for the right diagnosis. If they think there is nothing, then I will fight for another set of observations, a different team to assess him, because the issues are there to be seen, they really are!
A while ago I heard the term "warrior mums" - for those who fight relentlessly on behalf of their children. Sometimes we need to fight for education, for allowances to be made, for services to be provided, for the right diagnosis.
J needs this, and I will not let him down.
I'm ready to fight. Hard.
Wednesday, 18 December 2013
Is Santa Autistic?
After an interesting thread on an ASD support site, this sprang to mind . . .
"Is Santa Autistic?"
A little boy cried,
"Of course he isn't"
I quickly replied,
But then I thought a bit more
As I wandered away
Was there anything in it?
Could there be more to say?
"He's making a list,
He's checking it twice"
So the old man is thorough,
That's really quite nice. . .
But the next bit's a worry,
Those things on the list
What about "sometimes" or "Sorry"
All those "in between" bits?
The red suit? That's an issue,
The same suit every year?
repetitive, compulsive . . .
Something sensory here?
Avoiding other people,
That's a red flag for sure,
Climbing down the chimney?
Can't he just use the door?
And always, yes always
We hear "Ho ho ho"
Maybe Santa's non-verbal?
I really don't know . . .
So perhaps he was right,
That inquisitive young boy
Maybe Santa's autistic,
but he brings us great joy
By me, Jenn Impey, 18/12/2013
"Is Santa Autistic?"
A little boy cried,
"Of course he isn't"
I quickly replied,
But then I thought a bit more
As I wandered away
Was there anything in it?
Could there be more to say?
"He's making a list,
He's checking it twice"
So the old man is thorough,
That's really quite nice. . .
But the next bit's a worry,
Those things on the list
What about "sometimes" or "Sorry"
All those "in between" bits?
The red suit? That's an issue,
The same suit every year?
repetitive, compulsive . . .
Something sensory here?
Avoiding other people,
That's a red flag for sure,
Climbing down the chimney?
Can't he just use the door?
And always, yes always
We hear "Ho ho ho"
Maybe Santa's non-verbal?
I really don't know . . .
So perhaps he was right,
That inquisitive young boy
Maybe Santa's autistic,
but he brings us great joy
By me, Jenn Impey, 18/12/2013
Sunday, 15 December 2013
It finaly happened . . .
On Friday my husband and I were invited to CAMHS for the follow up appointment after J's group assessment sessions. This was a talk through of the report - allowing us to ask for more detail or explanations where necessary - and a discussion of what next.
The appointment was very quick - largely because there was no need for any "do you know why you are here" preamble, or much discussion of the next step because we are - as the two professionals put it - old hands at this now.
I feel a little deflated at what happened next.
I have always worried about direct observations, what will happen if the child is having a good day? Or if none of their particular buttons are pushed? Or if they are in an environment in which they thrive and are happy? Well, it seems that Mr J *was* happy, and chilled, and enjoyed the sessions. Whilst a lot of things were spotted - sensory seeking, needing to move all the time, rushing through tasks, poor attention span, unable to sustain social interaction - a lot of things were not.
I can't blame the staff at the assessment sessions, something like 80% of the time J is happy, and whilst he still has issues then it's the times he looses it that are the key to understanding him. If he didn't loose it during any of the sessions then it cannot be observed.
I just wish he had shown them a little more of his stressed side.
So, next is the referral to the Neuro developmental psychology team. But we already knew that! In a bit of stunning efficiency we got the appointment *before* we were told about the referral. So on Wednesday J and I get to try and cover the other 20% of him - all the stress and unhappiness that the group assessment team didn't see. That'll be fun . . .
I'm glad that there is plenty of opportunity for us, as parents, to give our observations, our experiences, and to have that recorded on the file. With the appointment so close to the last one it sort of feels like a rebuttal, but it isn't really, more of an addendum.
Just hope I managed to cover enough, give them enough insight, and help make the picture clearer and more complete.
The appointment was very quick - largely because there was no need for any "do you know why you are here" preamble, or much discussion of the next step because we are - as the two professionals put it - old hands at this now.
I feel a little deflated at what happened next.
I have always worried about direct observations, what will happen if the child is having a good day? Or if none of their particular buttons are pushed? Or if they are in an environment in which they thrive and are happy? Well, it seems that Mr J *was* happy, and chilled, and enjoyed the sessions. Whilst a lot of things were spotted - sensory seeking, needing to move all the time, rushing through tasks, poor attention span, unable to sustain social interaction - a lot of things were not.
I can't blame the staff at the assessment sessions, something like 80% of the time J is happy, and whilst he still has issues then it's the times he looses it that are the key to understanding him. If he didn't loose it during any of the sessions then it cannot be observed.
I just wish he had shown them a little more of his stressed side.
So, next is the referral to the Neuro developmental psychology team. But we already knew that! In a bit of stunning efficiency we got the appointment *before* we were told about the referral. So on Wednesday J and I get to try and cover the other 20% of him - all the stress and unhappiness that the group assessment team didn't see. That'll be fun . . .
I'm glad that there is plenty of opportunity for us, as parents, to give our observations, our experiences, and to have that recorded on the file. With the appointment so close to the last one it sort of feels like a rebuttal, but it isn't really, more of an addendum.
Just hope I managed to cover enough, give them enough insight, and help make the picture clearer and more complete.
Saturday, 7 December 2013
Ticket to ride - review and ramblings :)
A week ago we ended up in one of our favourite places in the world. The inimitable Leisure Games, an Aladdin's cave of wonderfully obscure board games, innovative European games, Role playing games, and so much more. My kids love it there, all of them couldn't wait to spend their pocket money - which is often hoarded for such trips. The staff are awesome, and good for advice, even the other customers are pretty cool - with one random dude offering A advice when she couldn't decide between two games. And the dude was right - the one she picked is *very* much A's cup of tea :)
Amongst other games we finally picked up a copy of Ticket to ride - hubby has had the app on his tablet for ages, and lots of friends have raved about it, so I kinda feel we're a bit late to this particular party.
The game is pretty simple in it's mechanics, by collecting different coloured cards you are able to claim various rail routes between American cities, earning points as you go.
Because each turn you only get to do one of the various actions turns move quickly and it keeps everyone engaged really well.
To start the game each player is dealt three "Quest" cards, which are scored by linking two cities in a continuous route, the more connections you need to make the higher the score. These cards are hidden, and not revealed to other players until the end of the game. Any quest you haven't completed deducts from your score . . . Each player has to keep at least two of the initial cards dealt to them, so there is some wiggle room in deciding what you will do.
You are also dealt four carriage cards, these are what you have to collect to claim routes.
Five further carriage cards are then placed face up beside the draw pile, and the remaining quest cards.
During your turn you can either :
We have played in various combinations of people now, and all of the family enjoy the game - J plays fairly randomly with not much strategy, M seems to be thinking several turns ahead.
It works well on an adult basis - My husband, L and I have played and all enjoyed it - we were a bit more strategic, and a bit more competitive than when we played with the younger ones ;)
A is still a little young to play alone, but I think that once she is familiar with the game she will be able to play independently too.
There is subtle learning going on - as with games like Risk there is a degree of learning where the places named are, but there is also a lot of quick thinking required. The turns move fast, and often the other players claim routes you need, so it is helping M and J learn to look for alternatives before giving up on a quest. There is also a need to learn when to sit back and gather resources, and when to claim routes and make the best of what you can do.
All told this was a good addition to our games shelves, and I can see it getting a lot of use.
Amongst other games we finally picked up a copy of Ticket to ride - hubby has had the app on his tablet for ages, and lots of friends have raved about it, so I kinda feel we're a bit late to this particular party.
The game is pretty simple in it's mechanics, by collecting different coloured cards you are able to claim various rail routes between American cities, earning points as you go.
Because each turn you only get to do one of the various actions turns move quickly and it keeps everyone engaged really well.
To start the game each player is dealt three "Quest" cards, which are scored by linking two cities in a continuous route, the more connections you need to make the higher the score. These cards are hidden, and not revealed to other players until the end of the game. Any quest you haven't completed deducts from your score . . . Each player has to keep at least two of the initial cards dealt to them, so there is some wiggle room in deciding what you will do.
You are also dealt four carriage cards, these are what you have to collect to claim routes.
Five further carriage cards are then placed face up beside the draw pile, and the remaining quest cards.
During your turn you can either :
- Take two face up carriage cards (except jokers)
- Take one face up Joker
- Take two carriage cards from the draw pile
- Take one face up carriage card and one from the draw pile
- Claim a route
- Take a new quest (draw three, keep at least one)
We have played in various combinations of people now, and all of the family enjoy the game - J plays fairly randomly with not much strategy, M seems to be thinking several turns ahead.
It works well on an adult basis - My husband, L and I have played and all enjoyed it - we were a bit more strategic, and a bit more competitive than when we played with the younger ones ;)
A is still a little young to play alone, but I think that once she is familiar with the game she will be able to play independently too.
There is subtle learning going on - as with games like Risk there is a degree of learning where the places named are, but there is also a lot of quick thinking required. The turns move fast, and often the other players claim routes you need, so it is helping M and J learn to look for alternatives before giving up on a quest. There is also a need to learn when to sit back and gather resources, and when to claim routes and make the best of what you can do.
All told this was a good addition to our games shelves, and I can see it getting a lot of use.
Tuesday, 3 December 2013
Rules
Sometimes I wonder how other families eat meals. You know, neuro typical families . . .
For us, the only way to keep things sane is constant reminders of "The Rules."
I guess most families have rules, perhaps largely unspoken, about how to behave around the dinner table.
Our first rule is pretty ordinary - No Rocking of Chairs. Since we bought M a wobble cushion he is much better, but there is still a large amount of rocking that goes on. Every now and then there is a crash as someone falls over too . . .
The next rule relates to rocking - No Knees! If left to their own devices M, J and frustratingly L will all brace their knees against the table. That means they rock with barely any effort :(
The third, and last of the obvious rules, is Use Cutlery. Ought to go without saying really, but it is said - a lot.
Now, I'm afraid, we move on to the more esoteric ones . . . Set purely for the retention of sanity.
No Singing.
No Dancing.
No Humming.
No Miming.
No Drumming.
No Banging.
No Minecraft discussions.
No Staring contests.
Seriously. Most of those need to be repeated most days.
Where else but an ASD household!
For us, the only way to keep things sane is constant reminders of "The Rules."
I guess most families have rules, perhaps largely unspoken, about how to behave around the dinner table.
Our first rule is pretty ordinary - No Rocking of Chairs. Since we bought M a wobble cushion he is much better, but there is still a large amount of rocking that goes on. Every now and then there is a crash as someone falls over too . . .
The next rule relates to rocking - No Knees! If left to their own devices M, J and frustratingly L will all brace their knees against the table. That means they rock with barely any effort :(
The third, and last of the obvious rules, is Use Cutlery. Ought to go without saying really, but it is said - a lot.
Now, I'm afraid, we move on to the more esoteric ones . . . Set purely for the retention of sanity.
No Singing.
No Dancing.
No Humming.
No Miming.
No Drumming.
No Banging.
No Minecraft discussions.
No Staring contests.
Seriously. Most of those need to be repeated most days.
Where else but an ASD household!
Thursday, 21 November 2013
More on support
So, one of the reasons that half term was crazy was because we met up with a lovely local ASD support group.
The first session was at a local(ish!) soft play palace. The group had exclusive use, and it was an evening session, with all height / age restrictions removed.
I have no idea how many children were there, but we took M, J and A. It is one of the few times we've been somewhere like this and not had issues with other children, or complaints about ours.
The feeling of acceptance was overwhelming, I was able to relax and not worry. My husband and I had a coffee / hot choc and a natter. It was lovely :)
The kids had fun too - they all made friends, and there was a mass game of freeze tag going on up in the netting.
We met the same group at the end of the week too - to go bowling. Again it was an exclusive use, which helped a lot!
Bowling is awkward for us - there is such a spread of ages - 14 down to 6 - and abilities that the scores are always well spread. Seeing them all up on the screen it is very hard to encourage J and M not to compare and compete.
We often have upsets because one feels useless compared to the others, or someone decides to try and beat their Dad's score . . . and this session was no different really.
Because we are mad (!) we went from the bowling alley to do a very quick bit of shopping (two things!!) and then on to a home ed Roller Skating session. A made a new friend there, which was lovely, but M caused a bit of an issue :(
Often when we've been before the main lights are off and disco lights are on. This time the hall was lit by the main lights, so once he had his skates on M went to ask the leisure centre staff to switch the lights off. I hadn't noticed that he had gone, because I was still helping A get her skates sorted. Suddenly the hall went dark - the disco lights weren't on, and now neither were the main lights . . .
There were already people skating, and now it was very *very* dark.
Someone hurried off to find out what was going on, and M came back. We were then told that the main lights take at least TEN minutes to warm up and come on. The disco lights came on, but they weren't very bright and a lot of the bulbs seem to have been blown. So for the next eternity (or so it seemed) the kids skated in semi-darkness. Eventually the lights came on, slowly, but how daft!
It's nice to know that M feels confident enough to go and ask random adults to do things, not so sure about the staff switching all the lights off without checking . . .
The craziness continued, as when we got home L had a friend visit, then M went out to chess club, J to a social club and A to visit some friends . . .
Pretty indicative of our terribly isolated (!) children's lives really.
The first session was at a local(ish!) soft play palace. The group had exclusive use, and it was an evening session, with all height / age restrictions removed.
I have no idea how many children were there, but we took M, J and A. It is one of the few times we've been somewhere like this and not had issues with other children, or complaints about ours.
The feeling of acceptance was overwhelming, I was able to relax and not worry. My husband and I had a coffee / hot choc and a natter. It was lovely :)
The kids had fun too - they all made friends, and there was a mass game of freeze tag going on up in the netting.
We met the same group at the end of the week too - to go bowling. Again it was an exclusive use, which helped a lot!
Bowling is awkward for us - there is such a spread of ages - 14 down to 6 - and abilities that the scores are always well spread. Seeing them all up on the screen it is very hard to encourage J and M not to compare and compete.
We often have upsets because one feels useless compared to the others, or someone decides to try and beat their Dad's score . . . and this session was no different really.
Because we are mad (!) we went from the bowling alley to do a very quick bit of shopping (two things!!) and then on to a home ed Roller Skating session. A made a new friend there, which was lovely, but M caused a bit of an issue :(
Often when we've been before the main lights are off and disco lights are on. This time the hall was lit by the main lights, so once he had his skates on M went to ask the leisure centre staff to switch the lights off. I hadn't noticed that he had gone, because I was still helping A get her skates sorted. Suddenly the hall went dark - the disco lights weren't on, and now neither were the main lights . . .
There were already people skating, and now it was very *very* dark.
Someone hurried off to find out what was going on, and M came back. We were then told that the main lights take at least TEN minutes to warm up and come on. The disco lights came on, but they weren't very bright and a lot of the bulbs seem to have been blown. So for the next eternity (or so it seemed) the kids skated in semi-darkness. Eventually the lights came on, slowly, but how daft!
It's nice to know that M feels confident enough to go and ask random adults to do things, not so sure about the staff switching all the lights off without checking . . .
The craziness continued, as when we got home L had a friend visit, then M went out to chess club, J to a social club and A to visit some friends . . .
Pretty indicative of our terribly isolated (!) children's lives really.
A little late . . .
Life snuck up on me again. Time to think has been at a premium, let alone time to write or post here!
I meant to post about Hallowe'en, so I'd better get on with that before it's more than a month ago :(
When we lived down in Nodnol my Mother in law used to "do" Halowe'en stuff with the kids. It was a big thing for them, a tradition was born. We'd go to our in laws, there would be sweets, pumpkin carving, dressing up, cake . . .
Then we moved.
Now we're an hour and a half away from our in laws, and we've moved on to a different - far more muddled - tradition.
Mostly we play a few games - flour towers, jelly worms, donut dangling, apple bobbing, balloon stomp - carve the pumpkins, and the kids dress up.
L (at 14 3/4) is really growing out of it all, but the other three still expect something fabulous.
This year was a mess, quite frankly. M and J were out doing their Bikeability course the day before Hallowe'en, and the day itself. That meant I had to be out too. The day after we had more manicness planned.
As things turned out that week - it was half term locally - was crazy. The kids understood that we didn't have time to do anything much, and so when the opportunity to go to a "glow party" came up, that filled (most of) the gap.
The party was interesting - loud music, junk food and glow sticks, what's not to love?!?
J didn't like the level of noise, but he coped OK. M took about an hour to "warm up" but was then dancing and having fun. We met up with some of A's friends, so she was sorted.
We'd bought pumpkins a few days previously, and finally managed to find the time to carve them on the Monday after Hallowe'en, and they looked fab - please take my word for it as I've accidentally deleted the pictures! L didn't carve a pumpkin, but he did make pumpkin bread, and then some soup.
On the whole I think I prefer this Hallowe'en - less for me to organise, and as the children grow up they can just drop out of things and stay at home. Maybe next year though it can be during a quieter week!
I meant to post about Hallowe'en, so I'd better get on with that before it's more than a month ago :(
When we lived down in Nodnol my Mother in law used to "do" Halowe'en stuff with the kids. It was a big thing for them, a tradition was born. We'd go to our in laws, there would be sweets, pumpkin carving, dressing up, cake . . .
Then we moved.
Now we're an hour and a half away from our in laws, and we've moved on to a different - far more muddled - tradition.
Mostly we play a few games - flour towers, jelly worms, donut dangling, apple bobbing, balloon stomp - carve the pumpkins, and the kids dress up.
L (at 14 3/4) is really growing out of it all, but the other three still expect something fabulous.
This year was a mess, quite frankly. M and J were out doing their Bikeability course the day before Hallowe'en, and the day itself. That meant I had to be out too. The day after we had more manicness planned.
As things turned out that week - it was half term locally - was crazy. The kids understood that we didn't have time to do anything much, and so when the opportunity to go to a "glow party" came up, that filled (most of) the gap.
The party was interesting - loud music, junk food and glow sticks, what's not to love?!?
J didn't like the level of noise, but he coped OK. M took about an hour to "warm up" but was then dancing and having fun. We met up with some of A's friends, so she was sorted.
We'd bought pumpkins a few days previously, and finally managed to find the time to carve them on the Monday after Hallowe'en, and they looked fab - please take my word for it as I've accidentally deleted the pictures! L didn't carve a pumpkin, but he did make pumpkin bread, and then some soup.
On the whole I think I prefer this Hallowe'en - less for me to organise, and as the children grow up they can just drop out of things and stay at home. Maybe next year though it can be during a quieter week!
Sunday, 10 November 2013
Cycles and stress
One of the many things to happen in October that I haven't managed to blog about was a Bikeability course.
We had the opportunity to book our guys on a bike safety course - I guess it's a newer version of cycling proficiency - organised by a local home ed mum via our County Council.
Since L has grown out of his bike and A isn't old enough only M and J went.
The first issue was sorting out their bikes . . . the paperwork said "roadworthy bikes" were required. Personally I had no idea what that actually meant or what condition the bikes were in, so my husband and I set about checking over the two bikes.
I have never actually owned a bike. He hasn't had much to do with bikes since he learned to drive decades ago. Maybe we were not the best suited to do this? But since we'd left it to the evening before the first session, we had little choice but to give it a go.
Brakes needed to be changed, tightened, realigned. Reflectors needed fitting, seats sorted, lots of other stuff was erm . . . well . . . fiddled with.
We managed, between us, to get things sorted. So off we went with two boys and two bikes squeezed into the car. The sessions began near a community centre - in the tennis courts - and then if the children were safe enough there would be three sessions "on the road". They had morning and afternoon sessions two days running.
The plan (ha!) was that I would find a bench nearby and read / knit / keep a vague eye on what was happening. The group was small (six children), the instructor was fully aware of M and J's issues, what could go wrong?!?
Each session was to be 2 hours, and then half an hour for lunch, and parents would be supervising their own children at lunch.
I backed off, had a wander around and discovered there were no benches within clear sight / sound of the tennis court, the grass was too wet to sit on, and it was cold. Just as I was trying to work out where to be, things began to go wrong.
M and J needed helmets tightening, and with their sensory issues they couldn't manage that themselves. So I stepped in to give them a hand, and then to help two more kids who needed help.
Then the instructor began checking brakes - earlier one of the other Dads had spotted M's brakes needed attention as he was dropping his children off, and *very kindly* sorted out the mess that we hadn't spotted. Things became calm again, until somehow J managed to detach the entire rear brake cable.
Remember how I said I'd never had a bike? Yeah. So, ten minutes of looking at the other bikes, and trying to work out how on Earth it had to go back, and we were fixed :)
At which point on of the other kids managed to break the brakes on his bike . . .
I spent a while trying before figuring out I just couldn't fix it, and the poor lad was in tears. I helped him to calm down, then we needed to negotiate some sort of bike share so he could still join in. That shouldn't be so hard, apart from the fact that the two children his size in the group are both Autistic . . .
The instructor was focussing on the other children, on getting through the program, so somehow all the talking and fixing ended up being left to me. I'm *really* glad I stuck around, because otherwise I think it would have been a very stressful time for the whole group.
The children managed to share their bikes well, there were a few sticky moments, but by keeping a close eye on things, and being very encouraging we made it to lunch :)
The helpful Dad came back - and thankfully was able to fix the bike. The kids relaxed and ate. Then off the whole group set over the road into a small housing estate.
I went to wait in the library - warmer, dryer, but still close enough if things went wrong.
When the group got back - 2 hours later - the instructor told me that J had been a bit tearful and was very tired.
We went home, warmed up , and chilled for a bit. Then I spoke to J about what had gone wrong. He sees his bike as an escape - a way to get out on his own and release tension. When was on the road, the group they were practicing various turns and junctions, and J kept forgetting to look the way he was being told to. He had to keep repeating things that the others had mastered. He felt as though his escape route was no longer a safe thing. He felt that he was stupid compared to the other children. His last concern was that he wouldn't pass the assessment at the end of the course.
We had a long talk about how he was learning new things, how long a day it was for him, how he was one of the youngest in the group. I gave him the chance to drop out of the next day if he wanted to.
In the end J decided to go back - as long as his father brought him hot coffee to have with his lunch . . .
At the second days lunch break I checked all was going OK with the instructor - she said both boys were hungry half way through, but otherwise all was good.
We gave them lunch, tea and coffee, and snuck a chocolate biscuit bar into their pockets to stave off hunger in the afternoon.
When they got back from the final session, J was in tears again. He was worn out and it showed.
Both boys passed their level two bikeability, which made J cry even more. He had been convinced he was going to fail it. The tears were happiness, relief, and exhaustion.
M was bouncy - very tiggerish - and the instructor told him to focus on listening rather than telling everyone else what to do.
As we were leaving M bounded over to give his dad and J a hug - it went wrong, because M nearly pushed the other two over. That caused M to breakdown too.
Two tired boys, lots of learning, and a pair of certificates. A bit of a rollercoaster, lots of sitting around waiting for me, but now we can feel a bit more confident that they are safe on their bikes.
We had the opportunity to book our guys on a bike safety course - I guess it's a newer version of cycling proficiency - organised by a local home ed mum via our County Council.
Since L has grown out of his bike and A isn't old enough only M and J went.
The first issue was sorting out their bikes . . . the paperwork said "roadworthy bikes" were required. Personally I had no idea what that actually meant or what condition the bikes were in, so my husband and I set about checking over the two bikes.
I have never actually owned a bike. He hasn't had much to do with bikes since he learned to drive decades ago. Maybe we were not the best suited to do this? But since we'd left it to the evening before the first session, we had little choice but to give it a go.
Brakes needed to be changed, tightened, realigned. Reflectors needed fitting, seats sorted, lots of other stuff was erm . . . well . . . fiddled with.
We managed, between us, to get things sorted. So off we went with two boys and two bikes squeezed into the car. The sessions began near a community centre - in the tennis courts - and then if the children were safe enough there would be three sessions "on the road". They had morning and afternoon sessions two days running.
The plan (ha!) was that I would find a bench nearby and read / knit / keep a vague eye on what was happening. The group was small (six children), the instructor was fully aware of M and J's issues, what could go wrong?!?
Each session was to be 2 hours, and then half an hour for lunch, and parents would be supervising their own children at lunch.
I backed off, had a wander around and discovered there were no benches within clear sight / sound of the tennis court, the grass was too wet to sit on, and it was cold. Just as I was trying to work out where to be, things began to go wrong.
M and J needed helmets tightening, and with their sensory issues they couldn't manage that themselves. So I stepped in to give them a hand, and then to help two more kids who needed help.
Then the instructor began checking brakes - earlier one of the other Dads had spotted M's brakes needed attention as he was dropping his children off, and *very kindly* sorted out the mess that we hadn't spotted. Things became calm again, until somehow J managed to detach the entire rear brake cable.
Remember how I said I'd never had a bike? Yeah. So, ten minutes of looking at the other bikes, and trying to work out how on Earth it had to go back, and we were fixed :)
At which point on of the other kids managed to break the brakes on his bike . . .
I spent a while trying before figuring out I just couldn't fix it, and the poor lad was in tears. I helped him to calm down, then we needed to negotiate some sort of bike share so he could still join in. That shouldn't be so hard, apart from the fact that the two children his size in the group are both Autistic . . .
The instructor was focussing on the other children, on getting through the program, so somehow all the talking and fixing ended up being left to me. I'm *really* glad I stuck around, because otherwise I think it would have been a very stressful time for the whole group.
The children managed to share their bikes well, there were a few sticky moments, but by keeping a close eye on things, and being very encouraging we made it to lunch :)
The helpful Dad came back - and thankfully was able to fix the bike. The kids relaxed and ate. Then off the whole group set over the road into a small housing estate.
I went to wait in the library - warmer, dryer, but still close enough if things went wrong.
When the group got back - 2 hours later - the instructor told me that J had been a bit tearful and was very tired.
We went home, warmed up , and chilled for a bit. Then I spoke to J about what had gone wrong. He sees his bike as an escape - a way to get out on his own and release tension. When was on the road, the group they were practicing various turns and junctions, and J kept forgetting to look the way he was being told to. He had to keep repeating things that the others had mastered. He felt as though his escape route was no longer a safe thing. He felt that he was stupid compared to the other children. His last concern was that he wouldn't pass the assessment at the end of the course.
We had a long talk about how he was learning new things, how long a day it was for him, how he was one of the youngest in the group. I gave him the chance to drop out of the next day if he wanted to.
In the end J decided to go back - as long as his father brought him hot coffee to have with his lunch . . .
At the second days lunch break I checked all was going OK with the instructor - she said both boys were hungry half way through, but otherwise all was good.
We gave them lunch, tea and coffee, and snuck a chocolate biscuit bar into their pockets to stave off hunger in the afternoon.
When they got back from the final session, J was in tears again. He was worn out and it showed.
Both boys passed their level two bikeability, which made J cry even more. He had been convinced he was going to fail it. The tears were happiness, relief, and exhaustion.
M was bouncy - very tiggerish - and the instructor told him to focus on listening rather than telling everyone else what to do.
As we were leaving M bounded over to give his dad and J a hug - it went wrong, because M nearly pushed the other two over. That caused M to breakdown too.
Two tired boys, lots of learning, and a pair of certificates. A bit of a rollercoaster, lots of sitting around waiting for me, but now we can feel a bit more confident that they are safe on their bikes.
Saturday, 9 November 2013
Rugby rocks
Today M played in a rugby tournament at the local professional stadium. In itself that would be a cool event for any 11 year old. For M though there is a history attached that makes it a triumph in many ways.
When we moved to this area four years ago, we knew no one. Over the first few months we networked a lot, and met a group of local home educators, one of whom coaches at a (fairly) local rugby club.
M was invited to join the club - and after a lot of discussion we encouraged him to do so.
For a while things were OK, but it was clear that M had a learning curve to climb. I had a couple of conversations with the coach about ways to help M integrate with the team, but I thought things were going in the right direction.
About a year after he joined the club I got a message suggesting that M was well and truly out of his depth, that he wasn't coping with the social interactions at the pitch side, and we were asked to pull him out of the squad. Things - I was told - were way beyond the point of being salvageable.
We spoke to M. My husband and I had long meandering conversations. We felt that the situation wasn't all M's fault - in part the coaching team noticed him joining in with others messing about and targeted him unfairly, in part there was some bad blood on various sides, and in part M didn't understand what he needed to be doing or what he was doing wrong.
We asked M if he wanted to stop going to rugby - he didn't. We asked if he wanted to switch to another club (my preferred choice), but no, he really didn't want that. So we set about identifying what the issues were and doing our best to help M to work things out.
A major issue was personal space - at the side of the pitch, when queueing for warm up or training exercises - so we worked through some exercises and talked a lot about that.
We also talked about how M makes himself more visible than other children. When there is a group messing about M is the most uncoordinated, the loudest, the one taking it a step further than the others. So we talked about resisting the urge to join in with poor behaviour. In some ways that felt unfair, but M often gets told off for doing what someone else got away with moments before.
The last part was focusing - and that we couldn't fix by talking. M found it hard to stay focused for the whole training session, or for the match, and would end up away from the play with no idea what was going on.
It has taken a while, but between the work we have done, a bit of maturity, a slight change in the coaching set up, and the team learning to get along, M is now doing well.
With junior rugby there is a slow introduction of the physical elements of the game - they start off playing "touch rugby" (a touch instead of a tackle), then move on to "tag rugby" (pulling off a Velcro tag rather than a tackle) , then tackles are introduced, and then scrums. M's age group (under 12's) play with full tackles and a scrum.
M has found a place in the scrum, and has settled with the squad. There are still issues that an NT child wouldn't have, but he enjoys the game, and plays well.
Today the tournament had a limited number of players per team - and M was chosen - but more than that, he scored a try :) When they got home M was so happy and proud of himself.
By persevering with rugby, instead of simply walking away M has learnt so much, and he is now a valued member of the team. It might have been easier to pull him out, but I'm really glad we didn't!
When we moved to this area four years ago, we knew no one. Over the first few months we networked a lot, and met a group of local home educators, one of whom coaches at a (fairly) local rugby club.
M was invited to join the club - and after a lot of discussion we encouraged him to do so.
For a while things were OK, but it was clear that M had a learning curve to climb. I had a couple of conversations with the coach about ways to help M integrate with the team, but I thought things were going in the right direction.
About a year after he joined the club I got a message suggesting that M was well and truly out of his depth, that he wasn't coping with the social interactions at the pitch side, and we were asked to pull him out of the squad. Things - I was told - were way beyond the point of being salvageable.
We spoke to M. My husband and I had long meandering conversations. We felt that the situation wasn't all M's fault - in part the coaching team noticed him joining in with others messing about and targeted him unfairly, in part there was some bad blood on various sides, and in part M didn't understand what he needed to be doing or what he was doing wrong.
We asked M if he wanted to stop going to rugby - he didn't. We asked if he wanted to switch to another club (my preferred choice), but no, he really didn't want that. So we set about identifying what the issues were and doing our best to help M to work things out.
A major issue was personal space - at the side of the pitch, when queueing for warm up or training exercises - so we worked through some exercises and talked a lot about that.
We also talked about how M makes himself more visible than other children. When there is a group messing about M is the most uncoordinated, the loudest, the one taking it a step further than the others. So we talked about resisting the urge to join in with poor behaviour. In some ways that felt unfair, but M often gets told off for doing what someone else got away with moments before.
The last part was focusing - and that we couldn't fix by talking. M found it hard to stay focused for the whole training session, or for the match, and would end up away from the play with no idea what was going on.
It has taken a while, but between the work we have done, a bit of maturity, a slight change in the coaching set up, and the team learning to get along, M is now doing well.
With junior rugby there is a slow introduction of the physical elements of the game - they start off playing "touch rugby" (a touch instead of a tackle), then move on to "tag rugby" (pulling off a Velcro tag rather than a tackle) , then tackles are introduced, and then scrums. M's age group (under 12's) play with full tackles and a scrum.
M has found a place in the scrum, and has settled with the squad. There are still issues that an NT child wouldn't have, but he enjoys the game, and plays well.
Today the tournament had a limited number of players per team - and M was chosen - but more than that, he scored a try :) When they got home M was so happy and proud of himself.
By persevering with rugby, instead of simply walking away M has learnt so much, and he is now a valued member of the team. It might have been easier to pull him out, but I'm really glad we didn't!
Wednesday, 6 November 2013
On the other side
All in all, this afternoon wasn't as bad as I anticipated :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
Appointment time
Today we are off to see the neuro developmental psychology team with M.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
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