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 diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Wednesday, 27 August 2014
Wednesday, 30 July 2014
Summer success and plans
Houston, we have a problem . . . Well, I do anyway!
Last time I blogged I had to change the account access, and now I can't remember the password! It's set up on Gmail, which isn't the main email I use, and I'm struggling to get a password reminder sent anywhere I can read it . . . for now I can access the blog via my tablet, but can't get into my gmail account at all. So I'm typing on a *really* small screen. The prospect of which has put me off blogging for a while. But it's about time I bit that particular bullet, so here we go . . .
Life is full of ups and downs, and one of the downs is CAMHs - so far they've been pretty decent with us, only one dodgy appointment and the record was set straight when we wrote to them. We are so close to the end of M and J's diagnosis journey, I can almost see the finishing post. So of course this has to be the time our local CAMHs have been told to find 25% budget savings! We know some of the people the boys have seen have taken redundancy or early retirement, so changes in who they are seen by is inevitable. I *think* that worked in our favour when J had his ADOS the other week, two fresh sets of eyes seem to have seen things a bit more clearly than those who thought they knew him. But the down side of this is longer waiting times.
It's been almost five months since M had his ADOS, and we haven't had a follow up appointment. So my husband called (again!) and asked how things were going . . .
Now, I do understand that losing a lot of staff creates problems, and by all accounts another member of staff is often off sick too, but my understanding has limits. So it was better that my hubby call, he's far more patient than I am ;)
He was told about budget cuts, longer waits, staff off sick, and then as a concession the lady he was talking to said she would try and send us the raw reports, although they "don't normally do that." A couple of days later we got the reports. They have more than a few grammatical errors, and it's clear they are meant for internal uses only, but now I can see what happened in the two ADOS assessments. I feel a lot happier :)
The reports are at great pains to point out that they are part of a larger process, not a diagnosis in and of themselves, and so I'm not going to share the content, suffice to say that it made me happy, then sad, then relieved.
I have no idea when we will get to the next stage, we're waiting to see the Neuro-development clinic, and hopefully when we do we will have a formal diagnosis for each of the boys.
So, that's M and J . . . The next big news is L.
Back at the beginning of May L began a paddle sports course. He was very nervous, unsure of going at all, it took a lot of talking on my part, and a lot more pressure than I was actually comfortable applying. In the end he went, with the proviso that he try for two weeks and if he hated it he could stop going.
He loved it! As far as I can tell he is actually quite good at the various paddle sports, and has passed the course with flying colours. This week he has gone to Devon with the group, for four days of paddling mayhem :) At 15 1/2 he is the youngest of the group, but he is happy with that, and has made some good friends. He's thinking of joining a local club and earning more qualifications . . .
Lastly little miss A. She is enjoying the school holidays. She is "playing out" for pretty much all the time we are at home, she has lots of local friends. For A socialising comes easy, she is a little bemused by all the "best friends" nonsense, and it has been a bit of a shock to her how unkind some of the kids are to each other, but on the whole she is happy and thriving.
Over the summer we have a lot of activities booked with our local ASD support charity, we saw "How to train your dragon 2" with them on Monday, and are going swimming on Saturday. It's shaping up to be a very fun few weeks :)maybe the start of the school term will give us a bit of a rest!
Last time I blogged I had to change the account access, and now I can't remember the password! It's set up on Gmail, which isn't the main email I use, and I'm struggling to get a password reminder sent anywhere I can read it . . . for now I can access the blog via my tablet, but can't get into my gmail account at all. So I'm typing on a *really* small screen. The prospect of which has put me off blogging for a while. But it's about time I bit that particular bullet, so here we go . . .
Life is full of ups and downs, and one of the downs is CAMHs - so far they've been pretty decent with us, only one dodgy appointment and the record was set straight when we wrote to them. We are so close to the end of M and J's diagnosis journey, I can almost see the finishing post. So of course this has to be the time our local CAMHs have been told to find 25% budget savings! We know some of the people the boys have seen have taken redundancy or early retirement, so changes in who they are seen by is inevitable. I *think* that worked in our favour when J had his ADOS the other week, two fresh sets of eyes seem to have seen things a bit more clearly than those who thought they knew him. But the down side of this is longer waiting times.
It's been almost five months since M had his ADOS, and we haven't had a follow up appointment. So my husband called (again!) and asked how things were going . . .
Now, I do understand that losing a lot of staff creates problems, and by all accounts another member of staff is often off sick too, but my understanding has limits. So it was better that my hubby call, he's far more patient than I am ;)
He was told about budget cuts, longer waits, staff off sick, and then as a concession the lady he was talking to said she would try and send us the raw reports, although they "don't normally do that." A couple of days later we got the reports. They have more than a few grammatical errors, and it's clear they are meant for internal uses only, but now I can see what happened in the two ADOS assessments. I feel a lot happier :)
The reports are at great pains to point out that they are part of a larger process, not a diagnosis in and of themselves, and so I'm not going to share the content, suffice to say that it made me happy, then sad, then relieved.
I have no idea when we will get to the next stage, we're waiting to see the Neuro-development clinic, and hopefully when we do we will have a formal diagnosis for each of the boys.
So, that's M and J . . . The next big news is L.
Back at the beginning of May L began a paddle sports course. He was very nervous, unsure of going at all, it took a lot of talking on my part, and a lot more pressure than I was actually comfortable applying. In the end he went, with the proviso that he try for two weeks and if he hated it he could stop going.
He loved it! As far as I can tell he is actually quite good at the various paddle sports, and has passed the course with flying colours. This week he has gone to Devon with the group, for four days of paddling mayhem :) At 15 1/2 he is the youngest of the group, but he is happy with that, and has made some good friends. He's thinking of joining a local club and earning more qualifications . . .
Lastly little miss A. She is enjoying the school holidays. She is "playing out" for pretty much all the time we are at home, she has lots of local friends. For A socialising comes easy, she is a little bemused by all the "best friends" nonsense, and it has been a bit of a shock to her how unkind some of the kids are to each other, but on the whole she is happy and thriving.
Over the summer we have a lot of activities booked with our local ASD support charity, we saw "How to train your dragon 2" with them on Monday, and are going swimming on Saturday. It's shaping up to be a very fun few weeks :)maybe the start of the school term will give us a bit of a rest!
Wednesday, 23 April 2014
Sometimes things go right
Here we are, the other side of a manic Easter break, life continues in the way it tends to - sometime a calm happy oasis of people in their own little worlds, sometimes a noisy chaotic mess of competing needs, mostly somewhere in between.
This week, or perhaps next, we shall be diving back into our regular lives. We don't have a routine or a schedule, but we do have a pattern to our days. Shaped by external clubs and activities, places we need to be at set times. Our time at home will continue to be worked around L's revision for his IGCSE's. The first is less than a month away! Eek!
Last Saturday we got a letter. A surprisingly nice letter. A resolution to something that I wasn't really expecting to resolve so easily.
Just before Christmas I went to an appointment at CAMHs with J. We saw a Psychiatrist and a Clinical nurse specialist. They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.
I left the meeting feeling dejected. I could tell by their words and actions that they saw a lot less of J's issues than they needed to. They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.
The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful! There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.
We took a few days to work out what to do. After all, these are "The Professionals." They Know Everything. Could we do anything? Was there any point trying? It really felt like a "Them and Us" situation, we felt powerless.
When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues. As things stood we didn't recognise J from the description in the last report. Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.
So we wrote a letter. Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage. We thanked them for their report and expressed our concern at the errors therein. And then sentence by sentence we took apart their report and re-wrote it. There was one paragraph in their three page report that didn't need altering. Just one. We listed what they had said, and then corrected it so that it reflected J. Our letter was long, but it was also detailed and polite.
Then we waited.
The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.
The second thanked us for the letter and told us they would respond but it would take some time. That one was already six weeks after we sent our letter, almost three months after the appointment.
And then, on Saturday, a third letter.
An amazing letter.
A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.
The letter apologised for the delay in getting back to us. They even thanked us for our letter, but the key phrase is :
This week, or perhaps next, we shall be diving back into our regular lives. We don't have a routine or a schedule, but we do have a pattern to our days. Shaped by external clubs and activities, places we need to be at set times. Our time at home will continue to be worked around L's revision for his IGCSE's. The first is less than a month away! Eek!
Last Saturday we got a letter. A surprisingly nice letter. A resolution to something that I wasn't really expecting to resolve so easily.
Just before Christmas I went to an appointment at CAMHs with J. We saw a Psychiatrist and a Clinical nurse specialist. They were termed the "Neuro-development team", and this was to work out a next step in J's assessment process - there was a chance they could give us the diagnosis there and then, but that was always unlikely.
I left the meeting feeling dejected. I could tell by their words and actions that they saw a lot less of J's issues than they needed to. They seemed to have things out of balance - making a big deal out of tiny things, and minimising other difficulties that really affected day-to-day life.
The report that finally came through was worse than anticipated - and believe me I wasn't expecting anything useful! There were factual errors, there were misrepresentations of things I had said, other stuff was left out, as in the meeting some things were inflated, others down played.
We took a few days to work out what to do. After all, these are "The Professionals." They Know Everything. Could we do anything? Was there any point trying? It really felt like a "Them and Us" situation, we felt powerless.
When, after a few days, we were still both very angry we decided that for J's sake we had to at least try and get his reports and file to be representative of him and his issues. As things stood we didn't recognise J from the description in the last report. Anyone further down the line would be trying to diagnose or help a different child if they used the file as it stood.
So we wrote a letter. Not an angry letter, not rude or confrontational, but as business-like and detached as we could manage. We thanked them for their report and expressed our concern at the errors therein. And then sentence by sentence we took apart their report and re-wrote it. There was one paragraph in their three page report that didn't need altering. Just one. We listed what they had said, and then corrected it so that it reflected J. Our letter was long, but it was also detailed and polite.
Then we waited.
The first contact we had was a letter telling us the Psychiatrist was on annual leave for three weeks.
The second thanked us for the letter and told us they would respond but it would take some time. That one was already six weeks after we sent our letter, almost three months after the appointment.
And then, on Saturday, a third letter.
An amazing letter.
A letter that gives me hope that this slow and clunky system might just be able to work with us, and not against us.
The letter apologised for the delay in getting back to us. They even thanked us for our letter, but the key phrase is :
As this report was based on information provided by yourselves . . .
WE WILL NOW TAKE INTO ACCOUNT THE ADDITIONAL
INFORMATION YOU HAVE PROVIDED.
They spoilt things a *tiny* bit by claiming the original report was "quite difficult to re-write" - surely it's a word processed document that they could have just amended?
Enclosed was a three page letter to be attached to the previous report. They have basically taken our letter word-for-word, but each paragraph is begun with a phrase like "You added" or "You corrected."
It's all there - in our own words, with the things we feel are the biggest described in detail.
IT WORKED!
When we got the original report I had no idea if we had any way to do this, but by being polite but firm we have challenged the "experts", made the file more accurate, stood up for J, stood our ground.
So please, everyone out there, if "They" write something that is wrong, stand firm, challenge them, it CAN be done!
Now we face a wait for J to have an ADOS, but at least the paperwork shows him as he is, not some distorted twisted view, and that is the best we can hope for.
Saturday, 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!
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 :)
Wednesday, 14 August 2013
Reasons and random thoughts on diagnosing
I often get asked why we have sought a diagnosis for each of the boys, so in this post I'll explore our reasons. But first . . .
A lot of people bridle at the thought of "labelling" a child, and their reactions to seeking a diagnosis are tied up in their idea of labelling. I have an issue with this. A BIG issue.
The idea seems to be that labelling a child (or person) is inherently bad, and part of that is the idea of a label. We label things, and then look no further than the label. To suggest doing that to a real live human being is wrong - BUT (and it's a big but, which is why it's in capitals) that is really not what is going on. If a person looks at a diagnosis for a child and assumes they know all they need to then the person is in the wrong - not the diagnosis.
With or without a diagnosis the difficulties, differences, uniqueness's that my children have will still be an inherent part of them. If those things are unnamed, undefined, unacknowledged it will not make life any easier for the boys, but it may make it harder - for both the boys and those who help them.
A diagnosis is a starting point for leaders of clubs the children go to - it should make the leaders take extra care, extra time, have extra patience. It doesn't always work like that, but having a diagnosis will let us pull the leaders up short, get them to look at their policies for SEN, and make allowances.
A diagnosis is also a direction to look in for me - it gives me a starting point for information, strategies, support. It lets me network with other parents, to hear what worked for them, to feel less alone.
A diagnosis is also an explanation for the boys - it has helped L and M to have an idea of what is going on, to understand why they find certain things difficult, to get to grips with differences and challenges.
Eventually a diagnosis should allow us to access help for the boys. Already L has had "special arrangements" for his exam - extra time and the use of a PC to record answers.
I also hope - perhaps in vain - that a diagnosis might help soothe extended-family tensions, and help them to be a bit more forgiving of my children's difficulties.
I often read that home educating families don't see a need to pursue a diagnosis, that they just bend around the child's differences and go with the flow. For a long time that was how we did things, but eventually we needed to step beyond that.
With L the need for a diagnosis didn't come until he wanted to do an IGCSE. We knew there were various accommodations that could be made for his difficulties but we needed an "official" diagnosis of dyslexia in order to access them. It was pretty straight forward to arrange, we asked the school that he was sitting the exam at (as an external candidate), and they did the rest. It was no surprise to any of us when the dyslexia was confirmed, but I think it was rather a relief! Whilst we had "known" for a very long time, there was always a sneaking fear that we were wrong, now it was there in black and white.
For M we felt the need to ask for help. Purely and simply we felt out of our depth and that we had done as much as we could and now needed a more expert opinion. A big driver of that was the fact that we could see lots of indicators for many different conditions, some of which required routine, others spontaneity. There were conflicts in how to deal with things and we just didn't know which way to jump. At the moment we are still working our way through this process, but we are looking at a whole host of different disorders, so it's no wonder we were confused!
Lastly we come to J. We had tried to get J assessed previously, but we didn't end up with a diagnosis, just a "not Autism". The more I read, the more he grew, the more I disagreed with that. J - as far as I can see - is classically Autistic, potentially trending towards savant syndrome. I wanted "them" to look again. So they are.
And that's why - for us - a diagnosis would be helpful, not to limit or pigeon hole the boys, but to help us, them, and the rest of the world understand their difficulties, and maybe even find a few ways to help.
A lot of people bridle at the thought of "labelling" a child, and their reactions to seeking a diagnosis are tied up in their idea of labelling. I have an issue with this. A BIG issue.
The idea seems to be that labelling a child (or person) is inherently bad, and part of that is the idea of a label. We label things, and then look no further than the label. To suggest doing that to a real live human being is wrong - BUT (and it's a big but, which is why it's in capitals) that is really not what is going on. If a person looks at a diagnosis for a child and assumes they know all they need to then the person is in the wrong - not the diagnosis.
With or without a diagnosis the difficulties, differences, uniqueness's that my children have will still be an inherent part of them. If those things are unnamed, undefined, unacknowledged it will not make life any easier for the boys, but it may make it harder - for both the boys and those who help them.
A diagnosis is a starting point for leaders of clubs the children go to - it should make the leaders take extra care, extra time, have extra patience. It doesn't always work like that, but having a diagnosis will let us pull the leaders up short, get them to look at their policies for SEN, and make allowances.
A diagnosis is also a direction to look in for me - it gives me a starting point for information, strategies, support. It lets me network with other parents, to hear what worked for them, to feel less alone.
A diagnosis is also an explanation for the boys - it has helped L and M to have an idea of what is going on, to understand why they find certain things difficult, to get to grips with differences and challenges.
Eventually a diagnosis should allow us to access help for the boys. Already L has had "special arrangements" for his exam - extra time and the use of a PC to record answers.
I also hope - perhaps in vain - that a diagnosis might help soothe extended-family tensions, and help them to be a bit more forgiving of my children's difficulties.
I often read that home educating families don't see a need to pursue a diagnosis, that they just bend around the child's differences and go with the flow. For a long time that was how we did things, but eventually we needed to step beyond that.
With L the need for a diagnosis didn't come until he wanted to do an IGCSE. We knew there were various accommodations that could be made for his difficulties but we needed an "official" diagnosis of dyslexia in order to access them. It was pretty straight forward to arrange, we asked the school that he was sitting the exam at (as an external candidate), and they did the rest. It was no surprise to any of us when the dyslexia was confirmed, but I think it was rather a relief! Whilst we had "known" for a very long time, there was always a sneaking fear that we were wrong, now it was there in black and white.
For M we felt the need to ask for help. Purely and simply we felt out of our depth and that we had done as much as we could and now needed a more expert opinion. A big driver of that was the fact that we could see lots of indicators for many different conditions, some of which required routine, others spontaneity. There were conflicts in how to deal with things and we just didn't know which way to jump. At the moment we are still working our way through this process, but we are looking at a whole host of different disorders, so it's no wonder we were confused!
Lastly we come to J. We had tried to get J assessed previously, but we didn't end up with a diagnosis, just a "not Autism". The more I read, the more he grew, the more I disagreed with that. J - as far as I can see - is classically Autistic, potentially trending towards savant syndrome. I wanted "them" to look again. So they are.
And that's why - for us - a diagnosis would be helpful, not to limit or pigeon hole the boys, but to help us, them, and the rest of the world understand their difficulties, and maybe even find a few ways to help.
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.
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