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 . . .
Showing posts with label CAMHs. Show all posts
Showing posts with label CAMHs. Show all posts
Wednesday, 27 August 2014
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, 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, 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!
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, 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.
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.
Wednesday, 6 November 2013
On the other side
All in all, this afternoon wasn't as bad as I anticipated :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
Appointment time
Today we are off to see the neuro developmental psychology team with M.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
Monday, 21 October 2013
The end of group assessments :(
We've come to the end of J's groups assessment. For the last five Fridays he has happily sat in a room with four other boys and done "stuff" whilst various professionals helped and observed.
I haven't been able to record here as much of what went on as I wanted, for one very simple reason ...
At the meeting about the assessments J was asked to make sure he respected the confidentiality of the other children in the group. He was told it was a rule, and he signed a piece of paper.
Anytime I have asked how things went I get a vague answer and am told it's confidential! He has really taken that word to heart and is doing his best.
I can give you a general idea - from what I have picked up, what M did, and what CAMHs told us would happen :
Each week they would sit and share one piece of news about their week, and they had a snack of fruit and water too.
The activities are chosen to give insight into what the children find hard, and they are observed keenly at all times. The way the kids go into the group and come out is also observed, as are their interactions with parents at those times.
Just like last time I hope J was able to show himself as he truly is, and that the observations give the team a clear picture of at least some of his differences.
Now we wait - in 4 - 6weeks my husband and I will be back, and we will meet with two or three of the team that ran the assessment group, one of them will read through their "write-up" of the assessment, and discuss in depth anything we want to know more about. At that point we will be told what they suggest happens next.
When M went through these sessions I had no idea what to expect, so I hope recording this here is able to help someone!
**Edited to add**
This assessment group is in part replacing the school based assessments that some children have - though the other children all go to school - and was looking at social and communication issues common in ASD, ADHD, and a few other conditions.
I haven't been able to record here as much of what went on as I wanted, for one very simple reason ...
At the meeting about the assessments J was asked to make sure he respected the confidentiality of the other children in the group. He was told it was a rule, and he signed a piece of paper.
Anytime I have asked how things went I get a vague answer and am told it's confidential! He has really taken that word to heart and is doing his best.
I can give you a general idea - from what I have picked up, what M did, and what CAMHs told us would happen :
- Week 1 - getting to know each other, setting rules, general free play.
- Week 2 - specific games, drawing our families
- Week 3 - imaginative play, one to one role play exercise
- Week 4 - physical games
- Week 5 - trip to café.
Each week they would sit and share one piece of news about their week, and they had a snack of fruit and water too.
The activities are chosen to give insight into what the children find hard, and they are observed keenly at all times. The way the kids go into the group and come out is also observed, as are their interactions with parents at those times.
Just like last time I hope J was able to show himself as he truly is, and that the observations give the team a clear picture of at least some of his differences.
Now we wait - in 4 - 6weeks my husband and I will be back, and we will meet with two or three of the team that ran the assessment group, one of them will read through their "write-up" of the assessment, and discuss in depth anything we want to know more about. At that point we will be told what they suggest happens next.
When M went through these sessions I had no idea what to expect, so I hope recording this here is able to help someone!
**Edited to add**
This assessment group is in part replacing the school based assessments that some children have - though the other children all go to school - and was looking at social and communication issues common in ASD, ADHD, and a few other conditions.
Tuesday, 8 October 2013
Support
It is hard to underestimate the power of support. No, I don't mean a good bra ;) I mean the strength that is gained by spending time with other people who really *get it*.
Before we decided to get J and M assessed I did a lot of reading. I learnt a lot about ASD and related conditions - I felt that I needed to know what was wrong before I began the struggle to get a diagnosis.
Somehow though, even though I was pretty sure I knew the issues - to a degree - I didn't feel comfortable reaching out and finding other people locally that had children with ASD.
I wish I had reached out earlier, but it took CAMHs taking us seriously and agreeing there were issues before I felt genuine. I thought other people whose children had a diagnosis were more "official", that our experiences wouldn't count.
It's not true folks! If you suspect an issue, look on Facebook for a local support group, then go and meet them!
We have met with two groups locally, and I have had online conversations with people in two or three others, and not once have I been shunned because we don't have a diagnosis yet. I have also now made friends with a good number of local home educators whose children have difficulties and differences.
The best bit is what we have found - understanding. I never realised how much that would mean. The understanding that when something goes wrong it's (usually) not malicious, the recognition that sometimes the boys do *odd* things, that sometimes they need a bit more time, or space.
It makes me think of :
“Friendship is born at that moment when one person says to another: "What! You too? I thought that no one but myself . . ."”
― C.S. Lewis, The Four Loves
Only in this case it's sharing the adventures, quirks and oddities of our children.
It is good to hear that other peoples children do the things M and J do - the things that drive me mad - because that shows those things are a feature of their issues, not naughtiness.
It is great to get to know home educators whose children have oddities too - in some of them I can see what would have happened if M and J had gone to school, in others I can see issues developing that we have overcome, in yet others I can see what might be coming our way. In every case it is an awesome feeling to listen, to share and to be listened to, because this can be a tough road. With a good support group around us it needn't be a lonely road.
Each of us has a different perspective on our children, different experiences to share, different challenges to overcome, but together we really are stronger.
Before we decided to get J and M assessed I did a lot of reading. I learnt a lot about ASD and related conditions - I felt that I needed to know what was wrong before I began the struggle to get a diagnosis.
Somehow though, even though I was pretty sure I knew the issues - to a degree - I didn't feel comfortable reaching out and finding other people locally that had children with ASD.
I wish I had reached out earlier, but it took CAMHs taking us seriously and agreeing there were issues before I felt genuine. I thought other people whose children had a diagnosis were more "official", that our experiences wouldn't count.
It's not true folks! If you suspect an issue, look on Facebook for a local support group, then go and meet them!
We have met with two groups locally, and I have had online conversations with people in two or three others, and not once have I been shunned because we don't have a diagnosis yet. I have also now made friends with a good number of local home educators whose children have difficulties and differences.
The best bit is what we have found - understanding. I never realised how much that would mean. The understanding that when something goes wrong it's (usually) not malicious, the recognition that sometimes the boys do *odd* things, that sometimes they need a bit more time, or space.
It makes me think of :
“Friendship is born at that moment when one person says to another: "What! You too? I thought that no one but myself . . ."”
― C.S. Lewis, The Four Loves
Only in this case it's sharing the adventures, quirks and oddities of our children.
It is good to hear that other peoples children do the things M and J do - the things that drive me mad - because that shows those things are a feature of their issues, not naughtiness.
It is great to get to know home educators whose children have oddities too - in some of them I can see what would have happened if M and J had gone to school, in others I can see issues developing that we have overcome, in yet others I can see what might be coming our way. In every case it is an awesome feeling to listen, to share and to be listened to, because this can be a tough road. With a good support group around us it needn't be a lonely road.
Each of us has a different perspective on our children, different experiences to share, different challenges to overcome, but together we really are stronger.
Tuesday, 24 September 2013
First group assesment session
So, Friday was J's first group assessment.
He was very excited about it, got ready to go out with no issues, bounded in to the waiting room happily saying hi to everyone.
When it was time to go in he was first up and away from us, no qualms at all about going in.
When we picked him up, he raced out of the corridor and almost bowled his Dad over . . . he was saying bye to people by name and still happy and bouncy.
As we left he was like a slippery eel - I could barely keep hold of his hand as we crossed roads, and he was all over the place in the car park.
He says the session went well, he found a particular toy and played a lot with that, but he isn't telling us much about what else happened.
He says there were no problems, no tellings off, and he's looking forward to next week already.
I am reassured by the fact he is happy, and I know they team will be recording how he leaves and reunites with us, I hope he was as bouncy in the room with them as he was on the way home!
This was the "getting to know you" week - so they set some ground rules, introduced themselves, and then played. They have a snack near to the end of the session, which J enjoyed - fruit and milk.
All in all a good start to things :)
He was very excited about it, got ready to go out with no issues, bounded in to the waiting room happily saying hi to everyone.
When it was time to go in he was first up and away from us, no qualms at all about going in.
When we picked him up, he raced out of the corridor and almost bowled his Dad over . . . he was saying bye to people by name and still happy and bouncy.
As we left he was like a slippery eel - I could barely keep hold of his hand as we crossed roads, and he was all over the place in the car park.
He says the session went well, he found a particular toy and played a lot with that, but he isn't telling us much about what else happened.
He says there were no problems, no tellings off, and he's looking forward to next week already.
I am reassured by the fact he is happy, and I know they team will be recording how he leaves and reunites with us, I hope he was as bouncy in the room with them as he was on the way home!
This was the "getting to know you" week - so they set some ground rules, introduced themselves, and then played. They have a snack near to the end of the session, which J enjoyed - fruit and milk.
All in all a good start to things :)
Tuesday, 10 September 2013
Group assessment time again :)
On Friday (yes, I know I'm a bit behind!) J had an appointment with CAMHS to discuss him going to a series of group assessments. He is rather excited about the sessions because M has already been through the process and thoroughly enjoyed it. We're quite happy too, because the process replaces school input, and with M it was quite a good indicator of his issues.
We started off with two of the ladies who will be leading the group - one is a play specialist, and I am not sure of the others particular qualifications. They introduced themselves to J, and talked about how the groups would be set up. There will be five or six children, from 5 - 10, and they will meet every Friday for five weeks. The sessions are 1 1/4 hours long. Each session will be a little different, and they ran through their plans.
The first week is introductions and talking about themselves, another week is races and active games, the final week they go to a café. In between there are various specific activities like drawing their family and a one-to-one imaginative activity.
They discussed the rules - no hurting, and no talking about things that happen there with anyone other than us (parents). As such I'll be vague about anything that happens - but I think it's OK to talk about the general procedure, just not to discuss specific children.
Attention then turned to us (both my husband and I were there) - did we have any questions (no, we've been through this one before), letting us know they have a "containment hold" they use if necessary for the safety of the group (though it's not been needed in a long time). The final question, however caught me on the hop.
I was pretty relaxed, thinking I knew what was going to happen and not expecting the "so, in general terms what are your concerns?" The trouble is J - like any child with extra needs - is a complex individual. I could talk for hours about the differences and difficulties he faces. I could go on and on and still think of something five minutes after the conversation ends. Usually I try to mentally prepare a sort of bullet point list. I'd forgotten to do that. I gave them some random points, can't even remember clearly what I said now! I'm not too worried though, because we have had two long appointments discussing this stuff so it will all be on file . . .
Now we are left at that awkward point. I usually tell J to behave before anything he is at without me - generally run over a list of "do's and don'ts" - sometimes he even listens (!) This time I actually sort of *want* him to play up. I want him to have an observable level of difficulty doing things, so that the team can see and draw conclusions. But I don't want him to upset the other children, or hurt anyone . . .
We started off with two of the ladies who will be leading the group - one is a play specialist, and I am not sure of the others particular qualifications. They introduced themselves to J, and talked about how the groups would be set up. There will be five or six children, from 5 - 10, and they will meet every Friday for five weeks. The sessions are 1 1/4 hours long. Each session will be a little different, and they ran through their plans.
The first week is introductions and talking about themselves, another week is races and active games, the final week they go to a café. In between there are various specific activities like drawing their family and a one-to-one imaginative activity.
They discussed the rules - no hurting, and no talking about things that happen there with anyone other than us (parents). As such I'll be vague about anything that happens - but I think it's OK to talk about the general procedure, just not to discuss specific children.
Attention then turned to us (both my husband and I were there) - did we have any questions (no, we've been through this one before), letting us know they have a "containment hold" they use if necessary for the safety of the group (though it's not been needed in a long time). The final question, however caught me on the hop.
I was pretty relaxed, thinking I knew what was going to happen and not expecting the "so, in general terms what are your concerns?" The trouble is J - like any child with extra needs - is a complex individual. I could talk for hours about the differences and difficulties he faces. I could go on and on and still think of something five minutes after the conversation ends. Usually I try to mentally prepare a sort of bullet point list. I'd forgotten to do that. I gave them some random points, can't even remember clearly what I said now! I'm not too worried though, because we have had two long appointments discussing this stuff so it will all be on file . . .
Now we are left at that awkward point. I usually tell J to behave before anything he is at without me - generally run over a list of "do's and don'ts" - sometimes he even listens (!) This time I actually sort of *want* him to play up. I want him to have an observable level of difficulty doing things, so that the team can see and draw conclusions. But I don't want him to upset the other children, or hurt anyone . . .
Wednesday, 7 August 2013
Introducing Mr J
On to son number 3 - J. . .
J is nine now, and as far as we can see pretty classically Autistic. Like M, J is going through the diagnosis process with Child and Adolescent Mental Health Services (CAMHs).
J was born by emergency C-section, at 40 weeks, and unlike a lot of mums out there I am convinced it was not only the right thing to do, but that it saved his life. As soon as my waters broke I *knew* something was not right. fifteen minutes after getting to the hospital they had agreed and the rest is history.
Only not quite. During everything that went on J was - we think - deprived of oxygen for a period of time. We lost the heart beat trace too, so his heart may have stopped. Once he was born it was clear to the doctors something wasn't right. It wasn't clear to me as I was unconscious ;). I think my husband probably knew well before J was born - he was preparing to come in and be there when the C-section was done but plans rapidly changed from just a local anaesthetic to full GA and lots of people being paged.
J had hypoxic ischaemic encephalopathy, and probably as a result his brain was very swollen for about three days. During that time he screamed, a lot, one single high pitched note until he needed to breathe, then he'd draw a huge shuddering breath and start again. He was in the neo natal intensive care unit, and he looked so wrong next to all those tiny premature babies. At 7 lb 9 oz he wasn't huge, but in that room he was a giant. Within a day he was moved to a small side room - his screams were distressing the tiny babies. He was on antibiotics, but otherwise just being monitored.
I'd lost a lot of blood, and ended up needing a 4 unit transfusion, but the pair of us were home six days later.
J developed pretty much as we'd expect, and apart from follow up appointments all was well.
From the time he could crawl J wanted to move. I think he wanted his own space. He didn't have preferred toys, I don't really remember him playing with anything at all. Life at this stage is a bit of a blur - J's older brother M was having trouble and that occupied a lot of my attention, and J was very self sufficient from very early on. He learned "baby signs" quickly, but pointed a lot at what he wanted.
Somewhere along the line we realised he was different. I don't know when, but I suspect it was a dawning realisation rather than a single moment of understanding. I remember being at a home ed meet in the grounds of a stately home. J was walking and kept going away from the group. Everyone told me to let him wander, he wouldn't go too far, so one day I "tested" that. J must have been about 18 months. I asked the other mums to watch the bigger two and then watched J go off, out of sight. Then I snuck up, hiding from him, and just watched. He ran. And ran. And ran. Not once did he look back. He went for about fifteen minutes. Not looking back, not talking to the people he passed, not stopping to look at things, just running. Then he got to the edge of the grounds and went out onto the pavement, turned left and carried on. That's when I stopped him, and decided we wouldn't be testing that theory again!
I can see now that J loves movement - now he's happiest on his bike, just cycling near home. He also loves to be on his own. When we go to groups he will chat to the adults, spend a little time with the children then need to go off on his own for a bit. We have come to an understanding, and as long as he can find that space he doesn't go too far. He tends to come back, periodically to say hi to me, chat to the other adults, then he may - or may not - go back to the other children.
We have other issues with J too - some are good, others not so much.
J is totally, brutally, honest. Every now and then he will say something totally true, but utterly unsayable to someone. Like the time he told his cousin her b**bs were too big because he bounced off them when he tried to hug her. Or when he told his uncle to eat less and exercise more so he wouldn't die as young. There are many other times, but those show what I mean ;) He also has no concept of someone being "a stranger" and will tell anyone anything. Or, somedays, everyone gets told everything. He has interests that he can talk about for hours, not noticing that the other person isn't interested. He doesn't *get* non verbal cues, has no idea of personal space. He can't do eye contact.
But there are good things too. J's mind is quick - so quick it leaves me behind sometimes. He is the proverbial sponge - absorbing information very easily, and remembering its meaning rather than repeating by rote. Somehow he taught himself to read. I don't actually know when, and I don't know how. I was trying to teach him, he was resisting. I stopped, and then a while later realised he was reading - instructions for games, websites over my shoulder, names of TV programmes, all sorts of stuff. In a similar way he has taught himself to count in 2's, 3's, 4's, 5's, 6's, 8's, 9's, 10's, 16's, 100's, and probably a whole lot more. He can do addition, subtraction, multiplication, division, fractions. He can cook pretty well, he can read a map. All self taught, when he was ready and willing he sorted it out himself.
We struggle with "formal" work, J finds writing hard, his concentration is poor if he hasn't chosen the task, so for the moment we are just letting him lead, and running to keep up.
When J was six I took him to the GP, because I was worried. The GP dismissed all my worries with the statement "Well as he never sees other children how can he make friends." Home ed was blamed for everything. I was floored - it was the first time I had encountered that attitude, and I was woefully unprepared. We left with a referral for a hearing test and that was it.
The Audiologist, however, was awesome. She spotted J was not quite right when he needed her to be totally precise with her instructions, and when his hearing was fine we talked, and she referred us on to the community paediatrician. He was OK, but not great. We had a couple of appointments and ended up with an ADOS assessment (an Autism diagnostic tool) Due to one sentence J was diagnosed as having problems but not Autism - and somehow that was all. No actual help, a few book suggestions and discharged.
The point that "showed" J wasn't autistic was when he knew one action figure would be cross if the other stole her shoes. About a year ago I was talking with J about an incident that had happened when he was unkind to his little sister. I asked how she felt and J said "Angry". I asked how he would feel if she did whatever it was to him and he pulled a face and waved his arms around in an angry way. I asked if that meant he would be angry and he said "how am I meant to know? I just feel" and then did it again. Further talking showed that whilst J knew certain actions resulted in certain feelings, he had no idea how those feelings actually felt. And he had no names for his own feelings and emotional responses - there was a complete disconnect between the words and the feelings.
With that in mind we decided to revisit the idea of a diagnosis. We asked our GP (a different doctor by now) just to refer us straight to CAMHs, which he did.
We saw a nurse at CAMHs - J and I first of all, and in that appointment she told me she could see "points of concern", and wondered about the "not-autism" diagnosis. We filled in their forms, my husband and I went back for another appointment, and now we are waiting. J will have the same group assessment that his older brother M had but this time we have had to wait 8 months so far.
I will add further posts about J's diagnosis process once something more happens.
J is nine now, and as far as we can see pretty classically Autistic. Like M, J is going through the diagnosis process with Child and Adolescent Mental Health Services (CAMHs).
J was born by emergency C-section, at 40 weeks, and unlike a lot of mums out there I am convinced it was not only the right thing to do, but that it saved his life. As soon as my waters broke I *knew* something was not right. fifteen minutes after getting to the hospital they had agreed and the rest is history.
Only not quite. During everything that went on J was - we think - deprived of oxygen for a period of time. We lost the heart beat trace too, so his heart may have stopped. Once he was born it was clear to the doctors something wasn't right. It wasn't clear to me as I was unconscious ;). I think my husband probably knew well before J was born - he was preparing to come in and be there when the C-section was done but plans rapidly changed from just a local anaesthetic to full GA and lots of people being paged.
J had hypoxic ischaemic encephalopathy, and probably as a result his brain was very swollen for about three days. During that time he screamed, a lot, one single high pitched note until he needed to breathe, then he'd draw a huge shuddering breath and start again. He was in the neo natal intensive care unit, and he looked so wrong next to all those tiny premature babies. At 7 lb 9 oz he wasn't huge, but in that room he was a giant. Within a day he was moved to a small side room - his screams were distressing the tiny babies. He was on antibiotics, but otherwise just being monitored.
I'd lost a lot of blood, and ended up needing a 4 unit transfusion, but the pair of us were home six days later.
J developed pretty much as we'd expect, and apart from follow up appointments all was well.
From the time he could crawl J wanted to move. I think he wanted his own space. He didn't have preferred toys, I don't really remember him playing with anything at all. Life at this stage is a bit of a blur - J's older brother M was having trouble and that occupied a lot of my attention, and J was very self sufficient from very early on. He learned "baby signs" quickly, but pointed a lot at what he wanted.
Somewhere along the line we realised he was different. I don't know when, but I suspect it was a dawning realisation rather than a single moment of understanding. I remember being at a home ed meet in the grounds of a stately home. J was walking and kept going away from the group. Everyone told me to let him wander, he wouldn't go too far, so one day I "tested" that. J must have been about 18 months. I asked the other mums to watch the bigger two and then watched J go off, out of sight. Then I snuck up, hiding from him, and just watched. He ran. And ran. And ran. Not once did he look back. He went for about fifteen minutes. Not looking back, not talking to the people he passed, not stopping to look at things, just running. Then he got to the edge of the grounds and went out onto the pavement, turned left and carried on. That's when I stopped him, and decided we wouldn't be testing that theory again!
I can see now that J loves movement - now he's happiest on his bike, just cycling near home. He also loves to be on his own. When we go to groups he will chat to the adults, spend a little time with the children then need to go off on his own for a bit. We have come to an understanding, and as long as he can find that space he doesn't go too far. He tends to come back, periodically to say hi to me, chat to the other adults, then he may - or may not - go back to the other children.
We have other issues with J too - some are good, others not so much.
J is totally, brutally, honest. Every now and then he will say something totally true, but utterly unsayable to someone. Like the time he told his cousin her b**bs were too big because he bounced off them when he tried to hug her. Or when he told his uncle to eat less and exercise more so he wouldn't die as young. There are many other times, but those show what I mean ;) He also has no concept of someone being "a stranger" and will tell anyone anything. Or, somedays, everyone gets told everything. He has interests that he can talk about for hours, not noticing that the other person isn't interested. He doesn't *get* non verbal cues, has no idea of personal space. He can't do eye contact.
But there are good things too. J's mind is quick - so quick it leaves me behind sometimes. He is the proverbial sponge - absorbing information very easily, and remembering its meaning rather than repeating by rote. Somehow he taught himself to read. I don't actually know when, and I don't know how. I was trying to teach him, he was resisting. I stopped, and then a while later realised he was reading - instructions for games, websites over my shoulder, names of TV programmes, all sorts of stuff. In a similar way he has taught himself to count in 2's, 3's, 4's, 5's, 6's, 8's, 9's, 10's, 16's, 100's, and probably a whole lot more. He can do addition, subtraction, multiplication, division, fractions. He can cook pretty well, he can read a map. All self taught, when he was ready and willing he sorted it out himself.
We struggle with "formal" work, J finds writing hard, his concentration is poor if he hasn't chosen the task, so for the moment we are just letting him lead, and running to keep up.
When J was six I took him to the GP, because I was worried. The GP dismissed all my worries with the statement "Well as he never sees other children how can he make friends." Home ed was blamed for everything. I was floored - it was the first time I had encountered that attitude, and I was woefully unprepared. We left with a referral for a hearing test and that was it.
The Audiologist, however, was awesome. She spotted J was not quite right when he needed her to be totally precise with her instructions, and when his hearing was fine we talked, and she referred us on to the community paediatrician. He was OK, but not great. We had a couple of appointments and ended up with an ADOS assessment (an Autism diagnostic tool) Due to one sentence J was diagnosed as having problems but not Autism - and somehow that was all. No actual help, a few book suggestions and discharged.
The point that "showed" J wasn't autistic was when he knew one action figure would be cross if the other stole her shoes. About a year ago I was talking with J about an incident that had happened when he was unkind to his little sister. I asked how she felt and J said "Angry". I asked how he would feel if she did whatever it was to him and he pulled a face and waved his arms around in an angry way. I asked if that meant he would be angry and he said "how am I meant to know? I just feel" and then did it again. Further talking showed that whilst J knew certain actions resulted in certain feelings, he had no idea how those feelings actually felt. And he had no names for his own feelings and emotional responses - there was a complete disconnect between the words and the feelings.
With that in mind we decided to revisit the idea of a diagnosis. We asked our GP (a different doctor by now) just to refer us straight to CAMHs, which he did.
We saw a nurse at CAMHs - J and I first of all, and in that appointment she told me she could see "points of concern", and wondered about the "not-autism" diagnosis. We filled in their forms, my husband and I went back for another appointment, and now we are waiting. J will have the same group assessment that his older brother M had but this time we have had to wait 8 months so far.
I will add further posts about J's diagnosis process once something more happens.
Saturday, 3 August 2013
The complexity of Mr M
Hello again :)
So, my first post was all about L, son number one - the trail blazer, and reason we home educated in the first place. Now for son number two - M.
M is so different to L, they may as well be different species. Where L is observant and slower to join in M races to jump into everything. He is the proverbial bull in a china shop, both emotionally and physically. M is now 11, staring down the barrel of puberty, on the rocky climb to independence, whilst at the same time clinging to the familiar comforting things of his younger days.
It's hard to list all of M's challenges, partly because we are still working our way through the (long) diagnosis process, partly because they overlap in so many places, and partly because he is just M to us and we bend around his issues reflexively - subconsciously - and don't always realise we are doing so.
For want of a better place to start, I'll start at the very beginning. I'm told that's a very good place to start . . .
M was a much longed for child, the birth of his older brother at 29 weeks had caused a lot of pain and fear, there were miscarriages in between their births, the pregnancy had been filled with nausea and worry. As it turned out M was by far my most "normal" birth.
Things were different quite quickly though - and it is only now that I am realising that some of those differences are early indicators. M took to nursing well - he was voracious and from day one was gaining weight. That was probably helped by the fact his older brother was still nursing, so there was no real wait for my milk to come in. The difference though was that M had no real concept of being full - he'd nurse endlessly, well past the point of being sated, then throw up. Then, distressed, he'd want to nurse again. He never managed to learn to "comfort nurse" - where the babe suckles without getting milk - and so just took far too much milk. He was also very windy. I spoke to the health visitor, who looked at his weight and declared all was fine. I spoke to the doctor who had apparently read the same script, and told me I was worrying over nothing. Then one day M threw up in front of the doctor, who asked if he did that often. She was shocked at the sheer volume of milk he gave back. I pointed out I'd told her about it several times, she prescribed infacol and diagnosed colic. Looking back I don't think it was colic, just M not realising when to stop - a common theme throughout his 11 years so far. Eventually we worked out that a dummy would help, and it did. Later I read that many children with ASD or ADHD are not nursed, often because their mothers found it impossible to make it work. Is that what was going on? I don't know, but it's an interesting thing to bear in mind.
As M grew other differences were becoming clear. He didn't have a favourite toy or activity - he preferred to join in with what other people were doing - or rather, take it off them and do it himself. He never did the lining up cars, or sorting things type of playing that is a classic sign of ASD, but he was very interested in collecting things from an early age. Certain clothes just wouldn't be worn. And he was always asleep by 8 - no matter where we were or what we were doing.
When M was 2 his younger brother J was born. I had to have an emergency C-section and spent almost a week in hospital, M couldn't spend much time visiting because he was so restless, wanted to fiddle with all the switches, wanted to explore. When I came home he was clingy - much more so than before. I think I overcompensated a bit too - I felt guilty for having all but disappeared for what must have seemed like a very long time to a two year old.
Time marched on, as M approached three I found myself having *those* conversations with people. If you have a child who is different, you'll know what I mean. The conversations where you say "I'm worried about M because he does . . ." and the other person says something like "all children do that" or "that's a boy thing" or "my son does that too" or "it's because you home educate". I know these people meant well, but as M's mother I just *knew* something wasn't right. Yes, lots of children might do whatever it was, but not to this extent, not this often, not this much.
When he was four we spoke to our health visitor and had him referred to a speech therapist. He was diagnosed as having a lateral lisp. Possibly it had been caused by having a dummy (yay for mummy guilt!), or possibly it was part of the reason he couldn't comfort nurse. We spent a few months going back for follow-up appointments, but in all honesty it just wasn't helping. M tried, we did the "homework", but there wasn't any improvement.
By this point it was clear that M had issues. He was always moving, he played alongside others rather than with them. He recreated stories from cartoons rather than creating his own. He collected things obsessively. He needed his coat to be done up and the hood up if he was going out. He wanted his shoes done up tightly to the point of leaving marks and bruises. He found it easy to talk to other people but not to maintain friendships. He got so angry.
Then we moved - a long way from family and existing friends, a whole new start.
M made friends quickly at groups we went to, but they found him "too much". He has no concept of personal space, doesn't get non-verbal communication, doesn't see when he has pushed people too far.
That caused problems - as a family we have all lost friends who cannot see past M (and J's) issues. In some ways that's fine - genuine friends can hopefully be understanding, and NT (neuro typical, ie normal) children can be led by example by parents. On the other hand it has affected the other children, and me.
About a year ago we started recognising a lot of obsessive traits - looking back they were always there, but now they are growing in prominence - at the same time I was aware that M has a lot of Autistic traits. From reading about both of those I found a huge conflict in how to approach dealing with them. OCD needs to be dealt with by introducing flexibility and deconstructing routines and rituals, whereas ASD children find comfort in predictability and routine. We talked about it, but neither my husband or I could work out how to do both. So we looked for outside help to try and define what was going on and how best to go about helping M.
Initially we spoke to our LA contact. I wanted to know if she could help, or refer us directly. The answer was no, which I had suspected it would be. So we went to our GP.
The GP was a bit rubbish. He asked to see M, and basically quizzed him about what he knew. I'm still not sure if that was a reaction to the fact that we are home edding, or a way to assess M's social interaction. I left the appointment frustrated, but with the referral I wanted - to the community paediatrician.
We saw the Paediatrician about 6 weeks later. It was a more-or-less pointless appointment, he asked what our concerns were, chatted to M, and then referred us on to Child and Adolescent Mental Health services (CAMHs).
Our first appointment with CAMHs began badly but got better. They were running late, which didn't help M to relax, and when we got to home education I could tell they were concerned about social interaction. Then the fire alarm went off, and we had a very informal 15 mins or so, during which M went on at length about all the clubs he goes to and the home ed stuff we do. When we got back inside the atmosphere was different, and home ed was no longer even being discussed.
Then my husband and I went back for another appointment without M, so we could discuss him without upsetting him. Along side this we had a small forests worth of forms to fill in detailing all the way back to birth how M had played and interacted. A lot of the questions were hard to remember details of, but we got through it in the end.
About 3 months later M went for five hour-and-a-bit assessment sessions. There was a small group of children and a very high number of adult observers / helpers. They put the kids through various games and activities, and made lots of observations. It seems to have been really helpful, and the report about it does list most of the issues we see in M. CAMHs viewed this as almost a replacement for school-based observations, though they also said we could get people from the various clubs to fill in observation forms if needed.
Now we are waiting again - this time for the neuro-development team. It's been about 10 months since the first appointment with the paediatrician, and it is a frustratingly long process, but I feel like we are making progress.
We don't have a diagnosis yet, but we are looking in the direction of Autism, ADHD, OCD and sensory issues.
I'll do more posts as we go through the process further, but also looking at each specific set of expressions and how we work around them - but for now I think this post is long enough!
So, my first post was all about L, son number one - the trail blazer, and reason we home educated in the first place. Now for son number two - M.
M is so different to L, they may as well be different species. Where L is observant and slower to join in M races to jump into everything. He is the proverbial bull in a china shop, both emotionally and physically. M is now 11, staring down the barrel of puberty, on the rocky climb to independence, whilst at the same time clinging to the familiar comforting things of his younger days.
It's hard to list all of M's challenges, partly because we are still working our way through the (long) diagnosis process, partly because they overlap in so many places, and partly because he is just M to us and we bend around his issues reflexively - subconsciously - and don't always realise we are doing so.
For want of a better place to start, I'll start at the very beginning. I'm told that's a very good place to start . . .
M was a much longed for child, the birth of his older brother at 29 weeks had caused a lot of pain and fear, there were miscarriages in between their births, the pregnancy had been filled with nausea and worry. As it turned out M was by far my most "normal" birth.
Things were different quite quickly though - and it is only now that I am realising that some of those differences are early indicators. M took to nursing well - he was voracious and from day one was gaining weight. That was probably helped by the fact his older brother was still nursing, so there was no real wait for my milk to come in. The difference though was that M had no real concept of being full - he'd nurse endlessly, well past the point of being sated, then throw up. Then, distressed, he'd want to nurse again. He never managed to learn to "comfort nurse" - where the babe suckles without getting milk - and so just took far too much milk. He was also very windy. I spoke to the health visitor, who looked at his weight and declared all was fine. I spoke to the doctor who had apparently read the same script, and told me I was worrying over nothing. Then one day M threw up in front of the doctor, who asked if he did that often. She was shocked at the sheer volume of milk he gave back. I pointed out I'd told her about it several times, she prescribed infacol and diagnosed colic. Looking back I don't think it was colic, just M not realising when to stop - a common theme throughout his 11 years so far. Eventually we worked out that a dummy would help, and it did. Later I read that many children with ASD or ADHD are not nursed, often because their mothers found it impossible to make it work. Is that what was going on? I don't know, but it's an interesting thing to bear in mind.
As M grew other differences were becoming clear. He didn't have a favourite toy or activity - he preferred to join in with what other people were doing - or rather, take it off them and do it himself. He never did the lining up cars, or sorting things type of playing that is a classic sign of ASD, but he was very interested in collecting things from an early age. Certain clothes just wouldn't be worn. And he was always asleep by 8 - no matter where we were or what we were doing.
When M was 2 his younger brother J was born. I had to have an emergency C-section and spent almost a week in hospital, M couldn't spend much time visiting because he was so restless, wanted to fiddle with all the switches, wanted to explore. When I came home he was clingy - much more so than before. I think I overcompensated a bit too - I felt guilty for having all but disappeared for what must have seemed like a very long time to a two year old.
Time marched on, as M approached three I found myself having *those* conversations with people. If you have a child who is different, you'll know what I mean. The conversations where you say "I'm worried about M because he does . . ." and the other person says something like "all children do that" or "that's a boy thing" or "my son does that too" or "it's because you home educate". I know these people meant well, but as M's mother I just *knew* something wasn't right. Yes, lots of children might do whatever it was, but not to this extent, not this often, not this much.
When he was four we spoke to our health visitor and had him referred to a speech therapist. He was diagnosed as having a lateral lisp. Possibly it had been caused by having a dummy (yay for mummy guilt!), or possibly it was part of the reason he couldn't comfort nurse. We spent a few months going back for follow-up appointments, but in all honesty it just wasn't helping. M tried, we did the "homework", but there wasn't any improvement.
By this point it was clear that M had issues. He was always moving, he played alongside others rather than with them. He recreated stories from cartoons rather than creating his own. He collected things obsessively. He needed his coat to be done up and the hood up if he was going out. He wanted his shoes done up tightly to the point of leaving marks and bruises. He found it easy to talk to other people but not to maintain friendships. He got so angry.
Then we moved - a long way from family and existing friends, a whole new start.
M made friends quickly at groups we went to, but they found him "too much". He has no concept of personal space, doesn't get non-verbal communication, doesn't see when he has pushed people too far.
That caused problems - as a family we have all lost friends who cannot see past M (and J's) issues. In some ways that's fine - genuine friends can hopefully be understanding, and NT (neuro typical, ie normal) children can be led by example by parents. On the other hand it has affected the other children, and me.
About a year ago we started recognising a lot of obsessive traits - looking back they were always there, but now they are growing in prominence - at the same time I was aware that M has a lot of Autistic traits. From reading about both of those I found a huge conflict in how to approach dealing with them. OCD needs to be dealt with by introducing flexibility and deconstructing routines and rituals, whereas ASD children find comfort in predictability and routine. We talked about it, but neither my husband or I could work out how to do both. So we looked for outside help to try and define what was going on and how best to go about helping M.
Initially we spoke to our LA contact. I wanted to know if she could help, or refer us directly. The answer was no, which I had suspected it would be. So we went to our GP.
The GP was a bit rubbish. He asked to see M, and basically quizzed him about what he knew. I'm still not sure if that was a reaction to the fact that we are home edding, or a way to assess M's social interaction. I left the appointment frustrated, but with the referral I wanted - to the community paediatrician.
We saw the Paediatrician about 6 weeks later. It was a more-or-less pointless appointment, he asked what our concerns were, chatted to M, and then referred us on to Child and Adolescent Mental Health services (CAMHs).
Our first appointment with CAMHs began badly but got better. They were running late, which didn't help M to relax, and when we got to home education I could tell they were concerned about social interaction. Then the fire alarm went off, and we had a very informal 15 mins or so, during which M went on at length about all the clubs he goes to and the home ed stuff we do. When we got back inside the atmosphere was different, and home ed was no longer even being discussed.
Then my husband and I went back for another appointment without M, so we could discuss him without upsetting him. Along side this we had a small forests worth of forms to fill in detailing all the way back to birth how M had played and interacted. A lot of the questions were hard to remember details of, but we got through it in the end.
About 3 months later M went for five hour-and-a-bit assessment sessions. There was a small group of children and a very high number of adult observers / helpers. They put the kids through various games and activities, and made lots of observations. It seems to have been really helpful, and the report about it does list most of the issues we see in M. CAMHs viewed this as almost a replacement for school-based observations, though they also said we could get people from the various clubs to fill in observation forms if needed.
Now we are waiting again - this time for the neuro-development team. It's been about 10 months since the first appointment with the paediatrician, and it is a frustratingly long process, but I feel like we are making progress.
We don't have a diagnosis yet, but we are looking in the direction of Autism, ADHD, OCD and sensory issues.
I'll do more posts as we go through the process further, but also looking at each specific set of expressions and how we work around them - but for now I think this post is long enough!
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