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 J. Show all posts
Showing posts with label J. Show all posts
Friday, 26 September 2014
Friday, 19 September 2014
Day twelve - not a good day, if I'm honest
Today has been less than perfect. To be truthful it has been rather hard and a little upsetting.
This morning M, J, A and I headed off to our "forest school." No-one woke up naturally, no-one wanted to get ready, no-one wanted to rush.
We got out of the door at the desired time, and a lacklustre bunch of offspring were loaded into the car.
We got to the site earlier than normal (!) and the kids perked up fairly quickly, but with some children having left and others joining the dynamic of the group was very different.
M wasn't coping well, the first session after a break is usually harder on him anyway, but the changes made him uneasy and he was hunting for the familiar interactions just and not finding them.
The session itself went well - once I managed to get M to focus and calm himself a bit - the children built a hibernaculum / hibernarium / bug hotel. They all worked well together, and a nice structure was built. There was a reminder of rules and boundaries and some catching up too :)
We stayed for a picnic afterwards, and the change in dynamic made things interesting there too - on the whole that was fairly quickly resolved, but the situation required more vigilance and talking than normal, and I felt rather drained by the time we got home. The children, on the other hand, say they had a great time. I guess it's all a matter of perspective.
Hopefully the next session will be easier, there is every reason to believe it will be, and our Fridays can be happy relaxing days again :)
When we got home L had had a nice quiet morning, and was both ready and willing to hit the books. He looked at percentages in Maths - we were both relieved to find he remembered all the rules / methods, and the exercises were done in about 30 minutes, which isn't bad for 4 sides of A4 :) In English we looked again at the poems from the other day, discussed and dissected them, looked logically at why they work and how, and all went well. ICT is still in the very early "This is an input device . . ." stages.
A and I played a lovely game called Dobble, which always leaves us smiling, and was a good redirect for her.
J has gone to a church youth group, M skipped chess because he is still wound up from earlier events, A is in the bath and L is chatting to friends on Skype whilst they play online.
Last night we read about the Crimean war, the Great Exhibition and The Crystal Palace. Tonight we have more from Queen Victoria's reign.
All in all, today could have been worse, we got through it fairly well, but it has taken a toll on everyone's energy levels and mood.
This morning M, J, A and I headed off to our "forest school." No-one woke up naturally, no-one wanted to get ready, no-one wanted to rush.
We got out of the door at the desired time, and a lacklustre bunch of offspring were loaded into the car.
We got to the site earlier than normal (!) and the kids perked up fairly quickly, but with some children having left and others joining the dynamic of the group was very different.
M wasn't coping well, the first session after a break is usually harder on him anyway, but the changes made him uneasy and he was hunting for the familiar interactions just and not finding them.
The session itself went well - once I managed to get M to focus and calm himself a bit - the children built a hibernaculum / hibernarium / bug hotel. They all worked well together, and a nice structure was built. There was a reminder of rules and boundaries and some catching up too :)
We stayed for a picnic afterwards, and the change in dynamic made things interesting there too - on the whole that was fairly quickly resolved, but the situation required more vigilance and talking than normal, and I felt rather drained by the time we got home. The children, on the other hand, say they had a great time. I guess it's all a matter of perspective.
Hopefully the next session will be easier, there is every reason to believe it will be, and our Fridays can be happy relaxing days again :)
When we got home L had had a nice quiet morning, and was both ready and willing to hit the books. He looked at percentages in Maths - we were both relieved to find he remembered all the rules / methods, and the exercises were done in about 30 minutes, which isn't bad for 4 sides of A4 :) In English we looked again at the poems from the other day, discussed and dissected them, looked logically at why they work and how, and all went well. ICT is still in the very early "This is an input device . . ." stages.
A and I played a lovely game called Dobble, which always leaves us smiling, and was a good redirect for her.
J has gone to a church youth group, M skipped chess because he is still wound up from earlier events, A is in the bath and L is chatting to friends on Skype whilst they play online.
Last night we read about the Crimean war, the Great Exhibition and The Crystal Palace. Tonight we have more from Queen Victoria's reign.
All in all, today could have been worse, we got through it fairly well, but it has taken a toll on everyone's energy levels and mood.
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, 20 August 2014
Not the summer I had planned
So far summer has been . . . odd. Normally we stay home, enjoy the garden and spend time with friends. We like our parks and museums quiet, which isn't an option in the school holidays!
This year the weather has been so variable that we've not done much outside at all - no blisteringly hot paddling pool days, no out door dinners, only one water fight!
We've also been busy, so time at home has been our decompression time.
We've been bowling, to a soft play centre and swimming with a support group, we've camped with the Scout group, this weekend we camp again with another group, and we've done a couple of home ed visits as well! Our quiet summer has gone up in smoke - which is both good and bad.
It's good, because these have been days well lived. Good friends and happy memories have been made. Time has been well spent, and we've all enjoyed it.
Bad because, for me, the summer is a time of recharging batteries. A few weeks with less expectations, less stress of getting places, less need to be on time. It's when I build up enthusiasm to face projects and workbooks again, when I gather resources, find inspiration. This year we have been so busy I think I'm going to hit September at the same point as I burn-out. So perhaps we will have to take the first part of September as a recovery period - lets just hope for an Indian summer, so our quiet days can be spent in the paddling pool!
In other news, we have an appointment next week with CAMHs. The follow up to both M and J's ADOS's. I *think* I know what will happen, but I am worrying about counting chickens before the eggs hatch. . . I am also worrying about what will come next. Still, worrying only borrows trouble from tomorrow as the saying goes. And bridges must be crossed when they are reached.
For the moment I think it's time to be happy with where we are, the kids have had a fun summer, probably their busiest yet, they are enjoying "Our Island story" as a bedtime book, Minecraft has turned into some kind of challenge-based project, with J and A asking me to set tasks and then comparing their builds, M is reading a roleplaying source book at night (I don't think he knows I know) and L is writing a story.
Even when planned summer relaxing goes out of the window the children are learning and growing faster than I can keep track of, and really, I guess, that's why we do things the way we do :)
This year the weather has been so variable that we've not done much outside at all - no blisteringly hot paddling pool days, no out door dinners, only one water fight!
We've also been busy, so time at home has been our decompression time.
We've been bowling, to a soft play centre and swimming with a support group, we've camped with the Scout group, this weekend we camp again with another group, and we've done a couple of home ed visits as well! Our quiet summer has gone up in smoke - which is both good and bad.
It's good, because these have been days well lived. Good friends and happy memories have been made. Time has been well spent, and we've all enjoyed it.
Bad because, for me, the summer is a time of recharging batteries. A few weeks with less expectations, less stress of getting places, less need to be on time. It's when I build up enthusiasm to face projects and workbooks again, when I gather resources, find inspiration. This year we have been so busy I think I'm going to hit September at the same point as I burn-out. So perhaps we will have to take the first part of September as a recovery period - lets just hope for an Indian summer, so our quiet days can be spent in the paddling pool!
In other news, we have an appointment next week with CAMHs. The follow up to both M and J's ADOS's. I *think* I know what will happen, but I am worrying about counting chickens before the eggs hatch. . . I am also worrying about what will come next. Still, worrying only borrows trouble from tomorrow as the saying goes. And bridges must be crossed when they are reached.
For the moment I think it's time to be happy with where we are, the kids have had a fun summer, probably their busiest yet, they are enjoying "Our Island story" as a bedtime book, Minecraft has turned into some kind of challenge-based project, with J and A asking me to set tasks and then comparing their builds, M is reading a roleplaying source book at night (I don't think he knows I know) and L is writing a story.
Even when planned summer relaxing goes out of the window the children are learning and growing faster than I can keep track of, and really, I guess, that's why we do things the way we do :)
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, 18 June 2014
Up, down, and often round the bend
It's been a while since I wrote anything here, life has been a curious mix of crazy and not worth blogging about.
Often I get mental blocks - if something big is happening then I can't seem to plan things the other side of the big thing, and we've had some major things to get to the other side of!
The biggest reason for my silence has been L and his exams. He took Edexcel Mathematics B IGCSE and Biology IGCSE. We hit the books for some pretty major revision, and fitting "normal" life in around the edges wore me out. L does not like exams, and despite being pretty good at both subjects his dyslexia may well get in the way of decent results, but now the exams are over all we can do is wait for mid August and results day.
Revising has been awkward. I generally prefer to follow the kids as they show me how they want and need to learn. Thus far it's been a successful strategy, but revising for exams changed that. Now we had a deadline, and a specified curriculum. No more digging as deep as L wanted, no more skimming over the boring bits. Together we had to do this in a much more structured way, and it really didn't suit either of us! L wanted to look far more deeply at the cellular biology. Ecology didn't interest him. At times I was telling him to stop being interested, and at other times trying to help him remember things he felt no connection to. Maths was a little easier - until L wanted to know WHY trigonometry works, and why Pythagoras was so fascinated by right angled triangles. Still, at the end of the day we got through the material, he retained a lot of the information, and he went into the exam halls confident and with a good shot at things.
So that was one big thing.
Another has been a weekend away. Not such a big deal? Really? We went away with the children's scout troop. I am not particularly keen on quite a few of the leaders, and there have been . . . issues in the past with how the leaders cope with the boys differences. Add to that the fact that this was our first camping adventure, and that L was going to be left at home for the weekend alone . . . so much potential for disaster!
L was fine. He had a friend come over and stay for part of the time we were away, and together they managed to cook (pizzas and curry) sleep (at least a little) and feed the animals. They didn't change the kittens litter tray, or walk the dog, or wash up (not convinced L washed himself let alone anything else!) When we got home the house was intact, and I guess since L is only 15 that's enough of a victory for me!
The camp was OK too. The first night we had a thunder storm. So now we know that the tent can cope with a lot of rain in a short space of time.
There were lots of activities on the Saturday, and from those we learnt that A is awesome at climbing - she went across the traversing wall so easily, confidently and quickly! She is also fab at monkey bars and other "dangling" sorts of things. We really need to find a way to get her climbing more.
J really enjoyed the air rifle range - and he improved his shooting over the day too. He wasn't so good at the climbing side of things, but he did persevere and improve. One thing he excelled at was random conversation. J has a small selection of topics of conversation, and if the other person is even vaguely positive about them J will natter for hours. The other person, of course, rarely has to say anything, but J barely notices that!
M didn't find an activity that he excelled at, nor did he fixate on any one thing in particular, he did, however, have fun and try pretty much everything.
All three children were awarded badges and trophies at the AGM - they have all been recognised as working hard and trying their best.
J has had awards before from both Cubs and Beavers, A has from Girls Brigade, but M never has. He was so sweet as the younger two got their awards - cheering for them and being very encouraging. He clearly didn't think he would get anything, so when his name was called his reaction was lovely. Lots of smiles all around :)
In other news, our local CAMHs are having a bit of a reshuffle, and this has dramatically increased waiting lists for things. So whilst J finally has a date for his ADOS we still haven't had a follow up for M's ADOS which was on the 4th of March! This process is taking forever!
So now that the exams, revision and camping are over and done with, I have lots of posts bubbling around in my mind. It's amazing what climbing over those mental blocks can do for the subconscious :)
Often I get mental blocks - if something big is happening then I can't seem to plan things the other side of the big thing, and we've had some major things to get to the other side of!
The biggest reason for my silence has been L and his exams. He took Edexcel Mathematics B IGCSE and Biology IGCSE. We hit the books for some pretty major revision, and fitting "normal" life in around the edges wore me out. L does not like exams, and despite being pretty good at both subjects his dyslexia may well get in the way of decent results, but now the exams are over all we can do is wait for mid August and results day.
Revising has been awkward. I generally prefer to follow the kids as they show me how they want and need to learn. Thus far it's been a successful strategy, but revising for exams changed that. Now we had a deadline, and a specified curriculum. No more digging as deep as L wanted, no more skimming over the boring bits. Together we had to do this in a much more structured way, and it really didn't suit either of us! L wanted to look far more deeply at the cellular biology. Ecology didn't interest him. At times I was telling him to stop being interested, and at other times trying to help him remember things he felt no connection to. Maths was a little easier - until L wanted to know WHY trigonometry works, and why Pythagoras was so fascinated by right angled triangles. Still, at the end of the day we got through the material, he retained a lot of the information, and he went into the exam halls confident and with a good shot at things.
So that was one big thing.
Another has been a weekend away. Not such a big deal? Really? We went away with the children's scout troop. I am not particularly keen on quite a few of the leaders, and there have been . . . issues in the past with how the leaders cope with the boys differences. Add to that the fact that this was our first camping adventure, and that L was going to be left at home for the weekend alone . . . so much potential for disaster!
L was fine. He had a friend come over and stay for part of the time we were away, and together they managed to cook (pizzas and curry) sleep (at least a little) and feed the animals. They didn't change the kittens litter tray, or walk the dog, or wash up (not convinced L washed himself let alone anything else!) When we got home the house was intact, and I guess since L is only 15 that's enough of a victory for me!
The camp was OK too. The first night we had a thunder storm. So now we know that the tent can cope with a lot of rain in a short space of time.
There were lots of activities on the Saturday, and from those we learnt that A is awesome at climbing - she went across the traversing wall so easily, confidently and quickly! She is also fab at monkey bars and other "dangling" sorts of things. We really need to find a way to get her climbing more.
J really enjoyed the air rifle range - and he improved his shooting over the day too. He wasn't so good at the climbing side of things, but he did persevere and improve. One thing he excelled at was random conversation. J has a small selection of topics of conversation, and if the other person is even vaguely positive about them J will natter for hours. The other person, of course, rarely has to say anything, but J barely notices that!
M didn't find an activity that he excelled at, nor did he fixate on any one thing in particular, he did, however, have fun and try pretty much everything.
All three children were awarded badges and trophies at the AGM - they have all been recognised as working hard and trying their best.
J has had awards before from both Cubs and Beavers, A has from Girls Brigade, but M never has. He was so sweet as the younger two got their awards - cheering for them and being very encouraging. He clearly didn't think he would get anything, so when his name was called his reaction was lovely. Lots of smiles all around :)
In other news, our local CAMHs are having a bit of a reshuffle, and this has dramatically increased waiting lists for things. So whilst J finally has a date for his ADOS we still haven't had a follow up for M's ADOS which was on the 4th of March! This process is taking forever!
So now that the exams, revision and camping are over and done with, I have lots of posts bubbling around in my mind. It's amazing what climbing over those mental blocks can do for the subconscious :)
Wednesday, 23 April 2014
Sometimes things go right
Here we are, the other side of a manic Easter break, life continues in the way it tends to - sometime a calm happy oasis of people in their own little worlds, sometimes a noisy chaotic mess of competing needs, mostly somewhere in between.
This week, or perhaps next, we shall be diving back into our regular lives. We don't have a routine or a schedule, but we do have a pattern to our days. Shaped by external clubs and activities, places we need to be at set times. Our time at home will continue to be worked around L's revision for his IGCSE's. The first is less than a month away! Eek!
Last Saturday we got a letter. A surprisingly nice letter. A resolution to something that I wasn't really expecting to resolve so easily.
Just before Christmas I went to an appointment at CAMHs with J. We saw a Psychiatrist and a Clinical nurse specialist. They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.
I left the meeting feeling dejected. I could tell by their words and actions that they saw a lot less of J's issues than they needed to. They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.
The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful! There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.
We took a few days to work out what to do. After all, these are "The Professionals." They Know Everything. Could we do anything? Was there any point trying? It really felt like a "Them and Us" situation, we felt powerless.
When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues. As things stood we didn't recognise J from the description in the last report. Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.
So we wrote a letter. Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage. We thanked them for their report and expressed our concern at the errors therein. And then sentence by sentence we took apart their report and re-wrote it. There was one paragraph in their three page report that didn't need altering. Just one. We listed what they had said, and then corrected it so that it reflected J. Our letter was long, but it was also detailed and polite.
Then we waited.
The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.
The second thanked us for the letter and told us they would respond but it would take some time. That one was already six weeks after we sent our letter, almost three months after the appointment.
And then, on Saturday, a third letter.
An amazing letter.
A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.
The letter apologised for the delay in getting back to us. They even thanked us for our letter, but the key phrase is :
This week, or perhaps next, we shall be diving back into our regular lives. We don't have a routine or a schedule, but we do have a pattern to our days. Shaped by external clubs and activities, places we need to be at set times. Our time at home will continue to be worked around L's revision for his IGCSE's. The first is less than a month away! Eek!
Last Saturday we got a letter. A surprisingly nice letter. A resolution to something that I wasn't really expecting to resolve so easily.
Just before Christmas I went to an appointment at CAMHs with J. We saw a Psychiatrist and a Clinical nurse specialist. They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.
I left the meeting feeling dejected. I could tell by their words and actions that they saw a lot less of J's issues than they needed to. They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.
The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful! There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.
We took a few days to work out what to do. After all, these are "The Professionals." They Know Everything. Could we do anything? Was there any point trying? It really felt like a "Them and Us" situation, we felt powerless.
When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues. As things stood we didn't recognise J from the description in the last report. Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.
So we wrote a letter. Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage. We thanked them for their report and expressed our concern at the errors therein. And then sentence by sentence we took apart their report and re-wrote it. There was one paragraph in their three page report that didn't need altering. Just one. We listed what they had said, and then corrected it so that it reflected J. Our letter was long, but it was also detailed and polite.
Then we waited.
The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.
The second thanked us for the letter and told us they would respond but it would take some time. That one was already six weeks after we sent our letter, almost three months after the appointment.
And then, on Saturday, a third letter.
An amazing letter.
A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.
The letter apologised for the delay in getting back to us. They even thanked us for our letter, but the key phrase is :
As this report was based on information provided by yourselves . . .
WE WILL NOW TAKE INTO ACCOUNT THE ADDITIONAL
INFORMATION YOU HAVE PROVIDED.
They spoilt things a *tiny* bit by claiming the original report was "quite difficult to re-write" - surely it's a word processed document that they could have just amended?
Enclosed was a three page letter to be attached to the previous report. They have basically taken our letter word-for-word, but each paragraph is begun with a phrase like "You added" or "You corrected."
It's all there - in our own words, with the things we feel are the biggest described in detail.
IT WORKED!
When we got the original report I had no idea if we had any way to do this, but by being polite but firm we have challenged the "experts", made the file more accurate, stood up for J, stood our ground.
So please, everyone out there, if "They" write something that is wrong, stand firm, challenge them, it CAN be done!
Now we face a wait for J to have an ADOS, but at least the paperwork shows him as he is, not some distorted twisted view, and that is the best we can hope for.
Wednesday, 2 April 2014
Sunshine, writing and being us :)
It's been a while . . . So much is going on here that it's hard to find a quiet moment to marshal my thoughts, and I'm exhausted, which makes it even more likely that I'll end up writing nonsense ;)
A week or so ago we had to fill in the paperwork for L's exam entry. Somehow that made us realise how little time he has left to get his head around the syllabus, even though we all knew the dates and he's doing fine. That has mean that he and I are spending more and more time ploughing through his books - and that really is a time sink! For the most part it's going well, even though it's a long way from the maths I know and understand. As much as anything I am learning with him, and I find that gives L more confidence if he gets stumped. A phrase that keeps cropping up is that "it's not a test", so if he needs to work things through with me it's not a big deal.
For a long time L was a perfectionist. If he did a page of maths and got 19/20 he'd be upset about the one that was wrong. Finally we're overcoming that - because so much of the syllabus is new to us, or takes things we know further, L is at long last accepting that he can do well without a perfect score. That said he's usually hitting well above 90%, so all is good :)
We have begun working through Write from the start - a sort of hand-writing program. All four children are doing it, mostly happily. The exercises are designed to improve hand eye co-ordination, pen control, to work with the proprioceptive system, to develop visual discrimination and generally to come at things from a neuro-developmental slant rather than just a repetitive one. All four children had difficulties with the first exercise - though different difficulties (as ever!)
The task was to put a single dot inside a small circle. The aim was to improve precision, develop and awareness of how hard to press the pen(cil) down, to work on hand movements and pen-grip. The circles were in columns, and got progressively closer together. L was fine to begin with, when there was a lot of space around the circles, but as they got closer together he found it increasingly hard to see clearly what he was doing. I'm guessing this is a dyslexia thing, and hoping that by working on it we can help other reading issues. M found it hard to get the dots to be dots rather than lines. He struggled from the start, but improved as the exercise went on. J was very disorganised in his filling things in - he found it hard to start at the top left and "read" across, and kept missing our circles. A found her hand got sore half way through, but otherwise was fine.
I'm hoping that since each of them had quite specific issues, working through the program will help them improve - if they'd all whizzed through it without a pause it might feel like a waste of time / money. And since the issues were so clear, it should be easy to keep track of how things are going. We're on the eighth exercise now, all of them are still fairly happy to keep going - I think it helps that the sheets only take about 5-10 mins to complete, and aren't particularly hard. So far we've had an improvement in the tasks themselves, but not in their writing. I'm hopeful though :)
I like the program, it seems very gentle in its increasing difficulty and short tasks are easier to fit in. I hope that it will work - I've read lots of positive things about it - I'll let you all know how things go :)
In other news . . . the weather! Wow! It's been so lovely here we've been out enjoying it :) We went to a local rec' and L flew his quadcopter - he's actually really good - the rest of us just hit each other with foam weapons. Then L joined in the melee. We have a large number of weapons - all of them are designed to look like fantasy weapons, for use as costume in Live Action Role Play (LARP), and they are all safe for LARP fighting. Made from foam, with a solid core, then coated in either rubber or latex they do sting, but rarely hurt (every now and then a freak shot catches someone badly, but really that's unavoidable in this sort of playing)
We all really enjoy this sort of "fighting" :) It's a great way to burn off energy, and it is a big adrenalin rush. The kids enjoy ganging up on my husband and I, and it is just a very "us" thing to do. There are probably all sorts of "soft" skills being learnt too though - hand eye co-ordination, consideration for others, not to charge from too far away or you'll be exhausted by the time you get there . . . So, here are a few pics . . .
A didn't get hurt BTW, J is very good at not *actually* making contact :)
Someone's gonna catch her biggest brother . . . .
General Melee
Just to prove M was there too :)
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 . . .
Wednesday, 15 January 2014
Drowning, and juggling badly at the same time
There.
I've said it.
I'm drowning.
Drowning in a hundred things that need to be done RIGHT NOW!
And hiding from a fist full of things that should have been done a long time ago.
In a couple of weeks we are going away. This is a good thing. Really it is!
Every year we go to a fantastic games convention called ConCeption (yes, I know. I didn't name it!) We have been going since it started - this is our 14th year. It is a place of happy memories, familiar enough to feel like "Home" and full of friends.
The children are so far beyond excited it's scary. In September M began asking how long it was until we went away. Even the fact that Christmas was before ConCeption didn't stop the holiday being their focus.
I kinda feel sorry for a dear friend - S - who has been told about the event in detail every time we have seen her for months now!
So why am I drowning? Well, this is a games convention, there will be much playing of role playing games there (as well as card and board / boxed games.) And each year I run some children's games. This year is no exception - I am scheduled to run two kids games, and one game for my brother in law (the infamous Uncle N who always comes with us.)
And therein lies the problem. None of the games are written - one is very almost done. Needs proof reading and a tiny bit of character creation. The game for N I have no ideas for at all. And the final game - a Pirate LRP - I have ideas for, but they are refusing to line up and be sensible.
The main issue is that my creativity drains away when I am tired, and right now I am exhausted. M is back to regular night terrors (though usually very short ones), and I am feeling run down :(
Add to that some organisational stress at Church (where I co-ordinate Junior church, no where near as grand / impressive as it sounds!), a bit of family stress, reorganising the kitchen as we have run out of work space (new microwave taking up too much room), a bookshelf needing drastic repairs, having to sort and archive home ed stuff, storing things in the loft - which then needed a bit of reorganising and The Letter, and that's why I'm drowning. Too many balls in the air, and not one I can easily afford to drop.
Oh, The Letter? Didn't I mention? We got the report of J's last assessment, and it is full of factual errors. We need to write correcting it - it's really that bad. It says he had surgery to have grommets fitted - his hearing has always been 100%. No surgery needed. Some problems I listed have been minimised and trivialised, and others have been left out entirely. The conclusions given look very much like a dismissal of our major concerns, even if they have agreed to further assessments. The report made me feel really angry - like I had been to a different meeting than the person who wrote it - and I am struggling to work out how to phrase things politely but firmly. We need these people to listen to us, not write off our worries. I think I have written a dozen letters in my head, but none that really fit the requirements.
I am determined that I will get it all done in time, and if I don't it won't be through lack of trying!
But I am starting to worry now.
I've said it.
I'm drowning.
Drowning in a hundred things that need to be done RIGHT NOW!
And hiding from a fist full of things that should have been done a long time ago.
In a couple of weeks we are going away. This is a good thing. Really it is!
Every year we go to a fantastic games convention called ConCeption (yes, I know. I didn't name it!) We have been going since it started - this is our 14th year. It is a place of happy memories, familiar enough to feel like "Home" and full of friends.
The children are so far beyond excited it's scary. In September M began asking how long it was until we went away. Even the fact that Christmas was before ConCeption didn't stop the holiday being their focus.
I kinda feel sorry for a dear friend - S - who has been told about the event in detail every time we have seen her for months now!
So why am I drowning? Well, this is a games convention, there will be much playing of role playing games there (as well as card and board / boxed games.) And each year I run some children's games. This year is no exception - I am scheduled to run two kids games, and one game for my brother in law (the infamous Uncle N who always comes with us.)
And therein lies the problem. None of the games are written - one is very almost done. Needs proof reading and a tiny bit of character creation. The game for N I have no ideas for at all. And the final game - a Pirate LRP - I have ideas for, but they are refusing to line up and be sensible.
The main issue is that my creativity drains away when I am tired, and right now I am exhausted. M is back to regular night terrors (though usually very short ones), and I am feeling run down :(
Add to that some organisational stress at Church (where I co-ordinate Junior church, no where near as grand / impressive as it sounds!), a bit of family stress, reorganising the kitchen as we have run out of work space (new microwave taking up too much room), a bookshelf needing drastic repairs, having to sort and archive home ed stuff, storing things in the loft - which then needed a bit of reorganising and The Letter, and that's why I'm drowning. Too many balls in the air, and not one I can easily afford to drop.
Oh, The Letter? Didn't I mention? We got the report of J's last assessment, and it is full of factual errors. We need to write correcting it - it's really that bad. It says he had surgery to have grommets fitted - his hearing has always been 100%. No surgery needed. Some problems I listed have been minimised and trivialised, and others have been left out entirely. The conclusions given look very much like a dismissal of our major concerns, even if they have agreed to further assessments. The report made me feel really angry - like I had been to a different meeting than the person who wrote it - and I am struggling to work out how to phrase things politely but firmly. We need these people to listen to us, not write off our worries. I think I have written a dozen letters in my head, but none that really fit the requirements.
I am determined that I will get it all done in time, and if I don't it won't be through lack of trying!
But I am starting to worry now.
Tuesday, 31 December 2013
Trials, triumphs and turkeys
It's almost over!
The Christmas period brings so many difficult moments, potential catastrophes, things that need to be actively managed in order to keep everyone calm and happy. But it's nearly done now. And I feel so relieved :)
This year, so far, has been our best Christmas ever. Things have mostly gone smoothly, and that is in no small part to some very detailed thinking and planning.
I would love to be able to be spontaneous about all this, to just decide at the last minute that we will go and visit someone, or have them here, but having been there and tried that, it just doesn't work for us.
Our Christmas started with a visit to my husbands family, a couple of weeks before the big day. M had asked if we could arrange to see his cousins on that side, and this was the only way it would work, because most of them would be visiting other sets of Grandparents over Christmas.
We went down for lunch, and it was crazy :) To be fair there were a lot of people in a fairly small house - 9 adults, three little kids, and my four bigger kids.
It was loud, crowded, and chaotic. J wasn't coping very well, and spent a while with his hands clamped over his ears, before moving to a quieter room. M disappeared after we ate (with his favourite uncle, N), the little kids went to play upstairs, and things calmed down.
There were issues - M and J got bored which is never good then later some singing toys came out and that made J uncomfortable again, but all in all things went pretty well. The younger cousins are getting to the age now where M, J and A know how to play with them, and there were times when we had five children giggling and playing nicely :)
The next point of Christmasy cheer was a visit to Birmingham - to the German market. We had a good day, visiting the new library (which is awesome! will do some pics in another post) and we picked up some more presents for cousins. M, A, my husband and I went on a Ferris wheel - L and J both decided it was too high for them, so they waited in the library. M was a bit obsessive about it, he wanted to go on, but was scared, but wanted to conquer his fear, but but but . . . eventually we got on. After the first turn M stopped clinging to me and began to relax. He said "this isn't so bad. I'm not scared!" I was though! The only reason I went on was because A really really wanted to, and I didn't think my hubby would want to take her. By the time it was clear Hubby *was* going on, it was far too late for me to back out. Still, I survived . . .
The next big thing was the Christmas tree. We all went out to choose it - that's a bit of a family thing now - and we got it upstairs into the living room without too much fuss. M and J decided on a name for it (just don't ask!) and we decided to let it settle overnight and decorate it in the morning.
After the younger three go to bed L, my hubby and I usually watch TV or play a board game together. That evening we just sat and watched the kittens. All three of the kittens seemed to think we had bought them a new toy . . . they climbed the tree, wrestled in it, raced to the top, scratched their claws on it, drank the water, chewed the branches, fell out of it, climbed it some more . . . we were rather worried that the tree would be bare by morning so we moved it to the spare room overnight.
One of the things I have learnt over the years is not to surprise the boys. We decided that the tree might not make it, and we had nowhere kitten proof to put it that was sensible (we could hide it in the spare room, or block the stairs, or put it in the kitchen making cooking harder . . .)
The next morning we sat everyone down, showed them the pictures of kittens up the tree. Showed them the needles on the floor. Told them we thought the kittens could destroy the tree, then asked for ideas.
We all talked it over, and decided we wanted the tree in the living room like it always is. We made sure the kids knew it might not survive, and decided to give it a try.
The decorations were subtle this year - we deliberately only put on robust baubles, and not too many. By now most of the baubles are on a shelf near the tree, as the kittens love to play with them, but so far only two have been broken. The tree has lost a lot more needles than I'd usually expect, but it still looks OK, which is a good thing, and really rather surprising :)
We have a second tree - a hold over from our old house. It is an artificial half tree designed to hang on the wall. In our old home we had no space for a big tree, and having this on the wall kept it safe from crawling babies too. In our new home this one hangs downstairs in the dining room. The downstairs tree has lots of baubles on - kind of balancing out the upstairs tree :)
We only decorate two rooms - the living room and the dining room - and I think that helps the boys not to get overwhelmed.
After the decorating came visiting my parents on Christmas eve. Sometimes visiting my folks can be stressful too - my Dad is now wheelchair bound and there isn't a lot of space to move about. Along side that there are the usual extended family / ASD difficulties to navigate.
We were able to meet up with my big sister and niece, which made things easier - more people to keep the boys occupied, and my sister, A, bought some books with her which the boys enjoyed.
The visit was as good as they get really - a bit boisterous towards the end, but mostly happy and calm.
Unfortunately J got very anxious that evening. He was worried we had got him the wrong presents. That things would go badly. He just couldn't settle.
My husband and I were trying to wrap things (why did we leave it to the last moment?!?) and J kept yo-yoing. There were tears. There were long cuddles. There were deep and meaningful conversations. Eventually there were shouts and grumps too. When we finished wrapping things I went up to cuddle him - a last resort so I would get *some* sleep. He finally settled down at 3 am, and was asleep by half past.
Christmas day was good - everyone got what they wanted and was happy, dinner was on time and cooked properly, relations were phoned and thanks passed around.
Then a boxing day visit to hubby's parents - much smoother as it was just us, them and uncle N - and we were pretty much done :)
The final Christmas visit was my other sisters family visiting us. We've not seen them for a long time, and I was nervous that the crazy boys would be hard work, but again all went well, and everyone was happy :)
This year, more than any previous years, I have put a lot of thought into how we do things.
Our visits were generally middle of the day ones - no really early starts, and no late evenings. That helped, because the middle of the day is when we get the most relaxed behaviour out of M and J.
I also planned to keep things short, but with the option of extending things if they were going well.
We did one "thing" per day. My parents and my in laws live in the same direction from us, it saves a lot of time to go to one, then go on to the other, but that was meaning that the second visit was more stressed for all sorts of reasons.
We made sure the children were not left alone with people they don't know all that well - this one was a hard lesson to learn. My husband and I (and to a big extent uncle N) can see when the kids are getting stressed, or over excited. We can help them to step back and calm down (mostly!) As much as they love our children, most of our extended family (on both sides) just don't really understand them or their difficulties, so things can get out of hand very easily and quickly.
Lastly, we took back-up plans :) We made sure we had something for the kids to do if they got bored or wound up, and we used specific activities to help calm things down.
I would love to just turn up at family gatherings and catch up with people I've not seen for ages, but I need to be much more present and conscious that that would allow. I've learnt (the hard way) that the time to relax is at home where it's just us. Other places require much more attention and concentration.
By recognising that, and making plans, we survived with just J's Christmas Eve anxieties. Which is a minor miracle, and a major blessing :)
There is much more to say, but that can wait for another post, or two . . .
Happy New Year :)
The Christmas period brings so many difficult moments, potential catastrophes, things that need to be actively managed in order to keep everyone calm and happy. But it's nearly done now. And I feel so relieved :)
This year, so far, has been our best Christmas ever. Things have mostly gone smoothly, and that is in no small part to some very detailed thinking and planning.
I would love to be able to be spontaneous about all this, to just decide at the last minute that we will go and visit someone, or have them here, but having been there and tried that, it just doesn't work for us.
Our Christmas started with a visit to my husbands family, a couple of weeks before the big day. M had asked if we could arrange to see his cousins on that side, and this was the only way it would work, because most of them would be visiting other sets of Grandparents over Christmas.
We went down for lunch, and it was crazy :) To be fair there were a lot of people in a fairly small house - 9 adults, three little kids, and my four bigger kids.
It was loud, crowded, and chaotic. J wasn't coping very well, and spent a while with his hands clamped over his ears, before moving to a quieter room. M disappeared after we ate (with his favourite uncle, N), the little kids went to play upstairs, and things calmed down.
There were issues - M and J got bored which is never good then later some singing toys came out and that made J uncomfortable again, but all in all things went pretty well. The younger cousins are getting to the age now where M, J and A know how to play with them, and there were times when we had five children giggling and playing nicely :)
The next point of Christmasy cheer was a visit to Birmingham - to the German market. We had a good day, visiting the new library (which is awesome! will do some pics in another post) and we picked up some more presents for cousins. M, A, my husband and I went on a Ferris wheel - L and J both decided it was too high for them, so they waited in the library. M was a bit obsessive about it, he wanted to go on, but was scared, but wanted to conquer his fear, but but but . . . eventually we got on. After the first turn M stopped clinging to me and began to relax. He said "this isn't so bad. I'm not scared!" I was though! The only reason I went on was because A really really wanted to, and I didn't think my hubby would want to take her. By the time it was clear Hubby *was* going on, it was far too late for me to back out. Still, I survived . . .
The next big thing was the Christmas tree. We all went out to choose it - that's a bit of a family thing now - and we got it upstairs into the living room without too much fuss. M and J decided on a name for it (just don't ask!) and we decided to let it settle overnight and decorate it in the morning.
After the younger three go to bed L, my hubby and I usually watch TV or play a board game together. That evening we just sat and watched the kittens. All three of the kittens seemed to think we had bought them a new toy . . . they climbed the tree, wrestled in it, raced to the top, scratched their claws on it, drank the water, chewed the branches, fell out of it, climbed it some more . . . we were rather worried that the tree would be bare by morning so we moved it to the spare room overnight.
One of the things I have learnt over the years is not to surprise the boys. We decided that the tree might not make it, and we had nowhere kitten proof to put it that was sensible (we could hide it in the spare room, or block the stairs, or put it in the kitchen making cooking harder . . .)
The next morning we sat everyone down, showed them the pictures of kittens up the tree. Showed them the needles on the floor. Told them we thought the kittens could destroy the tree, then asked for ideas.
We all talked it over, and decided we wanted the tree in the living room like it always is. We made sure the kids knew it might not survive, and decided to give it a try.
The decorations were subtle this year - we deliberately only put on robust baubles, and not too many. By now most of the baubles are on a shelf near the tree, as the kittens love to play with them, but so far only two have been broken. The tree has lost a lot more needles than I'd usually expect, but it still looks OK, which is a good thing, and really rather surprising :)
We have a second tree - a hold over from our old house. It is an artificial half tree designed to hang on the wall. In our old home we had no space for a big tree, and having this on the wall kept it safe from crawling babies too. In our new home this one hangs downstairs in the dining room. The downstairs tree has lots of baubles on - kind of balancing out the upstairs tree :)
We only decorate two rooms - the living room and the dining room - and I think that helps the boys not to get overwhelmed.
After the decorating came visiting my parents on Christmas eve. Sometimes visiting my folks can be stressful too - my Dad is now wheelchair bound and there isn't a lot of space to move about. Along side that there are the usual extended family / ASD difficulties to navigate.
We were able to meet up with my big sister and niece, which made things easier - more people to keep the boys occupied, and my sister, A, bought some books with her which the boys enjoyed.
The visit was as good as they get really - a bit boisterous towards the end, but mostly happy and calm.
Unfortunately J got very anxious that evening. He was worried we had got him the wrong presents. That things would go badly. He just couldn't settle.
My husband and I were trying to wrap things (why did we leave it to the last moment?!?) and J kept yo-yoing. There were tears. There were long cuddles. There were deep and meaningful conversations. Eventually there were shouts and grumps too. When we finished wrapping things I went up to cuddle him - a last resort so I would get *some* sleep. He finally settled down at 3 am, and was asleep by half past.
Christmas day was good - everyone got what they wanted and was happy, dinner was on time and cooked properly, relations were phoned and thanks passed around.
Then a boxing day visit to hubby's parents - much smoother as it was just us, them and uncle N - and we were pretty much done :)
The final Christmas visit was my other sisters family visiting us. We've not seen them for a long time, and I was nervous that the crazy boys would be hard work, but again all went well, and everyone was happy :)
This year, more than any previous years, I have put a lot of thought into how we do things.
Our visits were generally middle of the day ones - no really early starts, and no late evenings. That helped, because the middle of the day is when we get the most relaxed behaviour out of M and J.
I also planned to keep things short, but with the option of extending things if they were going well.
We did one "thing" per day. My parents and my in laws live in the same direction from us, it saves a lot of time to go to one, then go on to the other, but that was meaning that the second visit was more stressed for all sorts of reasons.
We made sure the children were not left alone with people they don't know all that well - this one was a hard lesson to learn. My husband and I (and to a big extent uncle N) can see when the kids are getting stressed, or over excited. We can help them to step back and calm down (mostly!) As much as they love our children, most of our extended family (on both sides) just don't really understand them or their difficulties, so things can get out of hand very easily and quickly.
Lastly, we took back-up plans :) We made sure we had something for the kids to do if they got bored or wound up, and we used specific activities to help calm things down.
I would love to just turn up at family gatherings and catch up with people I've not seen for ages, but I need to be much more present and conscious that that would allow. I've learnt (the hard way) that the time to relax is at home where it's just us. Other places require much more attention and concentration.
By recognising that, and making plans, we survived with just J's Christmas Eve anxieties. Which is a minor miracle, and a major blessing :)
There is much more to say, but that can wait for another post, or two . . .
Happy New Year :)
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.
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.
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