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 ADHD. Show all posts
Showing posts with label ADHD. Show all posts
Wednesday, 27 August 2014
Sunday, 10 November 2013
Cycles and stress
One of the many things to happen in October that I haven't managed to blog about was a Bikeability course.
We had the opportunity to book our guys on a bike safety course - I guess it's a newer version of cycling proficiency - organised by a local home ed mum via our County Council.
Since L has grown out of his bike and A isn't old enough only M and J went.
The first issue was sorting out their bikes . . . the paperwork said "roadworthy bikes" were required. Personally I had no idea what that actually meant or what condition the bikes were in, so my husband and I set about checking over the two bikes.
I have never actually owned a bike. He hasn't had much to do with bikes since he learned to drive decades ago. Maybe we were not the best suited to do this? But since we'd left it to the evening before the first session, we had little choice but to give it a go.
Brakes needed to be changed, tightened, realigned. Reflectors needed fitting, seats sorted, lots of other stuff was erm . . . well . . . fiddled with.
We managed, between us, to get things sorted. So off we went with two boys and two bikes squeezed into the car. The sessions began near a community centre - in the tennis courts - and then if the children were safe enough there would be three sessions "on the road". They had morning and afternoon sessions two days running.
The plan (ha!) was that I would find a bench nearby and read / knit / keep a vague eye on what was happening. The group was small (six children), the instructor was fully aware of M and J's issues, what could go wrong?!?
Each session was to be 2 hours, and then half an hour for lunch, and parents would be supervising their own children at lunch.
I backed off, had a wander around and discovered there were no benches within clear sight / sound of the tennis court, the grass was too wet to sit on, and it was cold. Just as I was trying to work out where to be, things began to go wrong.
M and J needed helmets tightening, and with their sensory issues they couldn't manage that themselves. So I stepped in to give them a hand, and then to help two more kids who needed help.
Then the instructor began checking brakes - earlier one of the other Dads had spotted M's brakes needed attention as he was dropping his children off, and *very kindly* sorted out the mess that we hadn't spotted. Things became calm again, until somehow J managed to detach the entire rear brake cable.
Remember how I said I'd never had a bike? Yeah. So, ten minutes of looking at the other bikes, and trying to work out how on Earth it had to go back, and we were fixed :)
At which point on of the other kids managed to break the brakes on his bike . . .
I spent a while trying before figuring out I just couldn't fix it, and the poor lad was in tears. I helped him to calm down, then we needed to negotiate some sort of bike share so he could still join in. That shouldn't be so hard, apart from the fact that the two children his size in the group are both Autistic . . .
The instructor was focussing on the other children, on getting through the program, so somehow all the talking and fixing ended up being left to me. I'm *really* glad I stuck around, because otherwise I think it would have been a very stressful time for the whole group.
The children managed to share their bikes well, there were a few sticky moments, but by keeping a close eye on things, and being very encouraging we made it to lunch :)
The helpful Dad came back - and thankfully was able to fix the bike. The kids relaxed and ate. Then off the whole group set over the road into a small housing estate.
I went to wait in the library - warmer, dryer, but still close enough if things went wrong.
When the group got back - 2 hours later - the instructor told me that J had been a bit tearful and was very tired.
We went home, warmed up , and chilled for a bit. Then I spoke to J about what had gone wrong. He sees his bike as an escape - a way to get out on his own and release tension. When was on the road, the group they were practicing various turns and junctions, and J kept forgetting to look the way he was being told to. He had to keep repeating things that the others had mastered. He felt as though his escape route was no longer a safe thing. He felt that he was stupid compared to the other children. His last concern was that he wouldn't pass the assessment at the end of the course.
We had a long talk about how he was learning new things, how long a day it was for him, how he was one of the youngest in the group. I gave him the chance to drop out of the next day if he wanted to.
In the end J decided to go back - as long as his father brought him hot coffee to have with his lunch . . .
At the second days lunch break I checked all was going OK with the instructor - she said both boys were hungry half way through, but otherwise all was good.
We gave them lunch, tea and coffee, and snuck a chocolate biscuit bar into their pockets to stave off hunger in the afternoon.
When they got back from the final session, J was in tears again. He was worn out and it showed.
Both boys passed their level two bikeability, which made J cry even more. He had been convinced he was going to fail it. The tears were happiness, relief, and exhaustion.
M was bouncy - very tiggerish - and the instructor told him to focus on listening rather than telling everyone else what to do.
As we were leaving M bounded over to give his dad and J a hug - it went wrong, because M nearly pushed the other two over. That caused M to breakdown too.
Two tired boys, lots of learning, and a pair of certificates. A bit of a rollercoaster, lots of sitting around waiting for me, but now we can feel a bit more confident that they are safe on their bikes.
We had the opportunity to book our guys on a bike safety course - I guess it's a newer version of cycling proficiency - organised by a local home ed mum via our County Council.
Since L has grown out of his bike and A isn't old enough only M and J went.
The first issue was sorting out their bikes . . . the paperwork said "roadworthy bikes" were required. Personally I had no idea what that actually meant or what condition the bikes were in, so my husband and I set about checking over the two bikes.
I have never actually owned a bike. He hasn't had much to do with bikes since he learned to drive decades ago. Maybe we were not the best suited to do this? But since we'd left it to the evening before the first session, we had little choice but to give it a go.
Brakes needed to be changed, tightened, realigned. Reflectors needed fitting, seats sorted, lots of other stuff was erm . . . well . . . fiddled with.
We managed, between us, to get things sorted. So off we went with two boys and two bikes squeezed into the car. The sessions began near a community centre - in the tennis courts - and then if the children were safe enough there would be three sessions "on the road". They had morning and afternoon sessions two days running.
The plan (ha!) was that I would find a bench nearby and read / knit / keep a vague eye on what was happening. The group was small (six children), the instructor was fully aware of M and J's issues, what could go wrong?!?
Each session was to be 2 hours, and then half an hour for lunch, and parents would be supervising their own children at lunch.
I backed off, had a wander around and discovered there were no benches within clear sight / sound of the tennis court, the grass was too wet to sit on, and it was cold. Just as I was trying to work out where to be, things began to go wrong.
M and J needed helmets tightening, and with their sensory issues they couldn't manage that themselves. So I stepped in to give them a hand, and then to help two more kids who needed help.
Then the instructor began checking brakes - earlier one of the other Dads had spotted M's brakes needed attention as he was dropping his children off, and *very kindly* sorted out the mess that we hadn't spotted. Things became calm again, until somehow J managed to detach the entire rear brake cable.
Remember how I said I'd never had a bike? Yeah. So, ten minutes of looking at the other bikes, and trying to work out how on Earth it had to go back, and we were fixed :)
At which point on of the other kids managed to break the brakes on his bike . . .
I spent a while trying before figuring out I just couldn't fix it, and the poor lad was in tears. I helped him to calm down, then we needed to negotiate some sort of bike share so he could still join in. That shouldn't be so hard, apart from the fact that the two children his size in the group are both Autistic . . .
The instructor was focussing on the other children, on getting through the program, so somehow all the talking and fixing ended up being left to me. I'm *really* glad I stuck around, because otherwise I think it would have been a very stressful time for the whole group.
The children managed to share their bikes well, there were a few sticky moments, but by keeping a close eye on things, and being very encouraging we made it to lunch :)
The helpful Dad came back - and thankfully was able to fix the bike. The kids relaxed and ate. Then off the whole group set over the road into a small housing estate.
I went to wait in the library - warmer, dryer, but still close enough if things went wrong.
When the group got back - 2 hours later - the instructor told me that J had been a bit tearful and was very tired.
We went home, warmed up , and chilled for a bit. Then I spoke to J about what had gone wrong. He sees his bike as an escape - a way to get out on his own and release tension. When was on the road, the group they were practicing various turns and junctions, and J kept forgetting to look the way he was being told to. He had to keep repeating things that the others had mastered. He felt as though his escape route was no longer a safe thing. He felt that he was stupid compared to the other children. His last concern was that he wouldn't pass the assessment at the end of the course.
We had a long talk about how he was learning new things, how long a day it was for him, how he was one of the youngest in the group. I gave him the chance to drop out of the next day if he wanted to.
In the end J decided to go back - as long as his father brought him hot coffee to have with his lunch . . .
At the second days lunch break I checked all was going OK with the instructor - she said both boys were hungry half way through, but otherwise all was good.
We gave them lunch, tea and coffee, and snuck a chocolate biscuit bar into their pockets to stave off hunger in the afternoon.
When they got back from the final session, J was in tears again. He was worn out and it showed.
Both boys passed their level two bikeability, which made J cry even more. He had been convinced he was going to fail it. The tears were happiness, relief, and exhaustion.
M was bouncy - very tiggerish - and the instructor told him to focus on listening rather than telling everyone else what to do.
As we were leaving M bounded over to give his dad and J a hug - it went wrong, because M nearly pushed the other two over. That caused M to breakdown too.
Two tired boys, lots of learning, and a pair of certificates. A bit of a rollercoaster, lots of sitting around waiting for me, but now we can feel a bit more confident that they are safe on their bikes.
Saturday, 9 November 2013
Rugby rocks
Today M played in a rugby tournament at the local professional stadium. In itself that would be a cool event for any 11 year old. For M though there is a history attached that makes it a triumph in many ways.
When we moved to this area four years ago, we knew no one. Over the first few months we networked a lot, and met a group of local home educators, one of whom coaches at a (fairly) local rugby club.
M was invited to join the club - and after a lot of discussion we encouraged him to do so.
For a while things were OK, but it was clear that M had a learning curve to climb. I had a couple of conversations with the coach about ways to help M integrate with the team, but I thought things were going in the right direction.
About a year after he joined the club I got a message suggesting that M was well and truly out of his depth, that he wasn't coping with the social interactions at the pitch side, and we were asked to pull him out of the squad. Things - I was told - were way beyond the point of being salvageable.
We spoke to M. My husband and I had long meandering conversations. We felt that the situation wasn't all M's fault - in part the coaching team noticed him joining in with others messing about and targeted him unfairly, in part there was some bad blood on various sides, and in part M didn't understand what he needed to be doing or what he was doing wrong.
We asked M if he wanted to stop going to rugby - he didn't. We asked if he wanted to switch to another club (my preferred choice), but no, he really didn't want that. So we set about identifying what the issues were and doing our best to help M to work things out.
A major issue was personal space - at the side of the pitch, when queueing for warm up or training exercises - so we worked through some exercises and talked a lot about that.
We also talked about how M makes himself more visible than other children. When there is a group messing about M is the most uncoordinated, the loudest, the one taking it a step further than the others. So we talked about resisting the urge to join in with poor behaviour. In some ways that felt unfair, but M often gets told off for doing what someone else got away with moments before.
The last part was focusing - and that we couldn't fix by talking. M found it hard to stay focused for the whole training session, or for the match, and would end up away from the play with no idea what was going on.
It has taken a while, but between the work we have done, a bit of maturity, a slight change in the coaching set up, and the team learning to get along, M is now doing well.
With junior rugby there is a slow introduction of the physical elements of the game - they start off playing "touch rugby" (a touch instead of a tackle), then move on to "tag rugby" (pulling off a Velcro tag rather than a tackle) , then tackles are introduced, and then scrums. M's age group (under 12's) play with full tackles and a scrum.
M has found a place in the scrum, and has settled with the squad. There are still issues that an NT child wouldn't have, but he enjoys the game, and plays well.
Today the tournament had a limited number of players per team - and M was chosen - but more than that, he scored a try :) When they got home M was so happy and proud of himself.
By persevering with rugby, instead of simply walking away M has learnt so much, and he is now a valued member of the team. It might have been easier to pull him out, but I'm really glad we didn't!
When we moved to this area four years ago, we knew no one. Over the first few months we networked a lot, and met a group of local home educators, one of whom coaches at a (fairly) local rugby club.
M was invited to join the club - and after a lot of discussion we encouraged him to do so.
For a while things were OK, but it was clear that M had a learning curve to climb. I had a couple of conversations with the coach about ways to help M integrate with the team, but I thought things were going in the right direction.
About a year after he joined the club I got a message suggesting that M was well and truly out of his depth, that he wasn't coping with the social interactions at the pitch side, and we were asked to pull him out of the squad. Things - I was told - were way beyond the point of being salvageable.
We spoke to M. My husband and I had long meandering conversations. We felt that the situation wasn't all M's fault - in part the coaching team noticed him joining in with others messing about and targeted him unfairly, in part there was some bad blood on various sides, and in part M didn't understand what he needed to be doing or what he was doing wrong.
We asked M if he wanted to stop going to rugby - he didn't. We asked if he wanted to switch to another club (my preferred choice), but no, he really didn't want that. So we set about identifying what the issues were and doing our best to help M to work things out.
A major issue was personal space - at the side of the pitch, when queueing for warm up or training exercises - so we worked through some exercises and talked a lot about that.
We also talked about how M makes himself more visible than other children. When there is a group messing about M is the most uncoordinated, the loudest, the one taking it a step further than the others. So we talked about resisting the urge to join in with poor behaviour. In some ways that felt unfair, but M often gets told off for doing what someone else got away with moments before.
The last part was focusing - and that we couldn't fix by talking. M found it hard to stay focused for the whole training session, or for the match, and would end up away from the play with no idea what was going on.
It has taken a while, but between the work we have done, a bit of maturity, a slight change in the coaching set up, and the team learning to get along, M is now doing well.
With junior rugby there is a slow introduction of the physical elements of the game - they start off playing "touch rugby" (a touch instead of a tackle), then move on to "tag rugby" (pulling off a Velcro tag rather than a tackle) , then tackles are introduced, and then scrums. M's age group (under 12's) play with full tackles and a scrum.
M has found a place in the scrum, and has settled with the squad. There are still issues that an NT child wouldn't have, but he enjoys the game, and plays well.
Today the tournament had a limited number of players per team - and M was chosen - but more than that, he scored a try :) When they got home M was so happy and proud of himself.
By persevering with rugby, instead of simply walking away M has learnt so much, and he is now a valued member of the team. It might have been easier to pull him out, but I'm really glad we didn't!
Wednesday, 6 November 2013
On the other side
All in all, this afternoon wasn't as bad as I anticipated :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
We met with a doctor and a nurse / play specialist. We had met the play specialist before and M really likes her. That made it all so much easier!
We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy. Then we moved on to toddler years - not much easier!
At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room. Mostly though we were happy for him to stay.
We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)
Most of the questions were about how interested in the world around him M is, and how he interacts with others. There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.
After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.
Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.
I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough. As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.
Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all. I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway. M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions. I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .
I would have loved to get a diagnosis today, but I'm happy with how things turned out :)
Appointment time
Today we are off to see the neuro developmental psychology team with M.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.
I will post later about how it went, but I wanted to cover how I feel right now as well.
I am nervous. I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.
At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer. He must have played with *something*, surely? But what? Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again.
I also want to protect M. The thought of him hearing us go over all his difficulties feels so destructive. But previously it hasn't bothered him at all. What if it does this time? How do I help him?
Another side is that this is a meeting with two new people - will home ed be an issue? Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?
Too many potentials, too much I can overthink, really I just want to be on the other side of this one.
So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.
Wednesday, 16 October 2013
Sleep . . .
Sleep is an issue for lots of parents. I had hoped that now our youngest is almost 7 it wouldn't be a problem for us. I was wrong.
Right from the beginning L had no real issues with sleep - as a baby he liked nursing to sleep, later he liked to be cuddled, but beyond that he developed good sleeping habits pretty easily. Now, at 14 1/2, his sleep patterns are changing, but he is responsible enough to be handling that pretty well.
He stays up once the younger three have gone to bed, and the three of us (His father, L and I) watch a couple of TV programs, often including the news, then he goes to his room. Watching the news with L is great - I can almost see his world view expanding before me, and we have some very interesting conversations. I love that our relationship is a happy one and we can talk through the controversial stuff. I love seeing him form his own views and work out how to put them across. Sometimes we disagree and I love that too - he is very much his own man, I could no more make him think as I do than I could make him shrink to shorter than me. Once he has gone up to his room he plays on his PC for a bit then goes to sleep. I trust him to do that in a sensible way. I'm not actually worried about what he accesses online - I don't think he'd go looking for anything dodgy, and he relishes the freedom to learn about things on his own terms. There have been a few mornings when he has found it hard to get up, but generally our lives can accommodate that. He is now moderating himself, because he hates "loosing the morning". If we have an early start I tend to remind him of that before I go to bed, but I don't police his bedtimes. So far it's all working well :)
M has always been a different kettle of fish. He would sleep anywhere if he was tired. And he had a pre-programmed bedtime - 8 pm. Until he was about 3 1/2 he would fall asleep wherever he was, whatever he was doing, at about 8. Often on the floor playing, or on the sofa watching TV. That faded, but he has always been easy to get to bed. A story, drink, kiss and tuck in. The trouble starts after this.
M has night terrors - they have always been there, to one degree or another, and I suspect they always will be. A night-terror differs from a nightmare in several ways - with a nightmare once the person is awake they might be scared, but they are pretty easy to soothe, and mostly lucid. A couple of words and a hug and the person is back to sleep. With M's night terrors it is never that simple. When he wakes he is not really awake. He is usually shouting, distressed, and still trapped in whatever is going on inside his head. There is no reasoning with him, we can't touch him because that often upsets him more, we can't play along, all we can do is watch and try to keep him safe.
For about three months earlier this year we had a night terror every night - most nights we had two. He'd be screaming, pacing around the dinner table for about 30 - 45 minutes. We tried a whole host of suggestions - waking him just before the night terror usually happened, talking it through in the day time, providing funny endings to typical dreams, more physical activity, less activity, no TV, no computer, general "are you happy" conversations - nothing had any effect. Eventually I read about "deep pressure therapy" and that struck a chord - M likes to be well wrapped, likes shoes done up too tight, likes to be under pillows - so I looked into buying a weighted blanket.
Unfortunately at £100+ it wasn't an option. So I made one :) It worked - from the first night we had a dramatic improvement. Now, don't get me wrong, M still has night terrors, but it is once a week, or one every two weeks, not two a night.
J has issues too. He always found it harder to fall asleep, and for a long time he would "yo-yo" - I'd get him to bed, and within minutes he'd be up for one reason or another. In the last year that has (finally) disappeared :) But he has issues with "little accidents" at night. I have no idea how to counter that one - he doesn't drink much, doesn't have a night time drink, goes to the loo last thing before bed . . .
Lastly is little A. Where we used to live we only had two bedrooms, so until she was 3 there was no choice but for her to share our room. When we moved it took us a while to get things sorted, and she didn't go to her own room until she was four. For the next year she was on the middle floor of the house with us - and the living room. She loved to stay up and watch TV, and if we put her to bed she would also yo-yo, so we'd let her stay up for a bit then get her back to bed.
The trouble was she didn't want to go to bed . . . for a long time she would stay up, happily singing, playing, chatting until midnight. I have a video of her making up dance routines at 00:15 one night. It took some getting organised, but by moving her bedroom to the top floor and by repeatedly shooing her back to bed we've managed what seemed impossible :)
Bedtime for A, J and M is now a couple of chapters of a book - currently Redwall - then discussion about what we are doing the next day, then toilet for M and J, then tuck in and lights out. Most nights they go straight to sleep :)
Then we wait. If M is going to have a night terror it is almost always before midnight. If we get to that point it is "safe" to go to bed :)
Why is all this on my mind? Well, to start with M had a bad night last night, but to follow up I saw this on Facebook : Go to Bed- it's an article discussing research linking irregular bedtimes and behaviour issues.
I know that when I am very tired I find it harder to cope with life's craziness. I see no reason to think that my children are any different. But I feel there are problems with the article - there are lots of confounding factors that haven't been taken into account. The first, biggest, question is WHY. Why the irregular bedtimes - does the child resist sleep (lots of SEN children do), is the home a chaotic environment (already known to affect behaviour), do the parents have difficulties that are preventing more organisation (parental difficulties are known to affect behaviour), is the family over programed (ie doing too many evening activities.)
The article states that regularising bedtimes improved behaviour - but what else has changed as well as bedtime? If the family time more organised, less activities, are the parents being supported and helped?
Looking at my own children I can see a couple of things -
reducing M's night terrors hasn't improved daytime behaviour.
J is no calmer when he has a full nights sleep.
A is happier now she gets a good nights sleep.
L is a grumpy teen ;) regardless of amounts of sleep.
I think, therefore, that for an NT child, getting enough sleep matters. For a child with additional needs getting more sleep won't "fix them."
That's all fine and dandy, but so far three people have pointed this article out to me as a way to help my kids. Because that is what they have read into it - get your children in bed at a sensible time and all their issues will melt away.
That just leaves me feeling a bit like shouting "if it was as simple as putting them to bed on time I'd have done that years ago!"
Right from the beginning L had no real issues with sleep - as a baby he liked nursing to sleep, later he liked to be cuddled, but beyond that he developed good sleeping habits pretty easily. Now, at 14 1/2, his sleep patterns are changing, but he is responsible enough to be handling that pretty well.
He stays up once the younger three have gone to bed, and the three of us (His father, L and I) watch a couple of TV programs, often including the news, then he goes to his room. Watching the news with L is great - I can almost see his world view expanding before me, and we have some very interesting conversations. I love that our relationship is a happy one and we can talk through the controversial stuff. I love seeing him form his own views and work out how to put them across. Sometimes we disagree and I love that too - he is very much his own man, I could no more make him think as I do than I could make him shrink to shorter than me. Once he has gone up to his room he plays on his PC for a bit then goes to sleep. I trust him to do that in a sensible way. I'm not actually worried about what he accesses online - I don't think he'd go looking for anything dodgy, and he relishes the freedom to learn about things on his own terms. There have been a few mornings when he has found it hard to get up, but generally our lives can accommodate that. He is now moderating himself, because he hates "loosing the morning". If we have an early start I tend to remind him of that before I go to bed, but I don't police his bedtimes. So far it's all working well :)
M has always been a different kettle of fish. He would sleep anywhere if he was tired. And he had a pre-programmed bedtime - 8 pm. Until he was about 3 1/2 he would fall asleep wherever he was, whatever he was doing, at about 8. Often on the floor playing, or on the sofa watching TV. That faded, but he has always been easy to get to bed. A story, drink, kiss and tuck in. The trouble starts after this.
M has night terrors - they have always been there, to one degree or another, and I suspect they always will be. A night-terror differs from a nightmare in several ways - with a nightmare once the person is awake they might be scared, but they are pretty easy to soothe, and mostly lucid. A couple of words and a hug and the person is back to sleep. With M's night terrors it is never that simple. When he wakes he is not really awake. He is usually shouting, distressed, and still trapped in whatever is going on inside his head. There is no reasoning with him, we can't touch him because that often upsets him more, we can't play along, all we can do is watch and try to keep him safe.
For about three months earlier this year we had a night terror every night - most nights we had two. He'd be screaming, pacing around the dinner table for about 30 - 45 minutes. We tried a whole host of suggestions - waking him just before the night terror usually happened, talking it through in the day time, providing funny endings to typical dreams, more physical activity, less activity, no TV, no computer, general "are you happy" conversations - nothing had any effect. Eventually I read about "deep pressure therapy" and that struck a chord - M likes to be well wrapped, likes shoes done up too tight, likes to be under pillows - so I looked into buying a weighted blanket.
Unfortunately at £100+ it wasn't an option. So I made one :) It worked - from the first night we had a dramatic improvement. Now, don't get me wrong, M still has night terrors, but it is once a week, or one every two weeks, not two a night.
J has issues too. He always found it harder to fall asleep, and for a long time he would "yo-yo" - I'd get him to bed, and within minutes he'd be up for one reason or another. In the last year that has (finally) disappeared :) But he has issues with "little accidents" at night. I have no idea how to counter that one - he doesn't drink much, doesn't have a night time drink, goes to the loo last thing before bed . . .
Lastly is little A. Where we used to live we only had two bedrooms, so until she was 3 there was no choice but for her to share our room. When we moved it took us a while to get things sorted, and she didn't go to her own room until she was four. For the next year she was on the middle floor of the house with us - and the living room. She loved to stay up and watch TV, and if we put her to bed she would also yo-yo, so we'd let her stay up for a bit then get her back to bed.
The trouble was she didn't want to go to bed . . . for a long time she would stay up, happily singing, playing, chatting until midnight. I have a video of her making up dance routines at 00:15 one night. It took some getting organised, but by moving her bedroom to the top floor and by repeatedly shooing her back to bed we've managed what seemed impossible :)
Bedtime for A, J and M is now a couple of chapters of a book - currently Redwall - then discussion about what we are doing the next day, then toilet for M and J, then tuck in and lights out. Most nights they go straight to sleep :)
Then we wait. If M is going to have a night terror it is almost always before midnight. If we get to that point it is "safe" to go to bed :)
Why is all this on my mind? Well, to start with M had a bad night last night, but to follow up I saw this on Facebook : Go to Bed- it's an article discussing research linking irregular bedtimes and behaviour issues.
I know that when I am very tired I find it harder to cope with life's craziness. I see no reason to think that my children are any different. But I feel there are problems with the article - there are lots of confounding factors that haven't been taken into account. The first, biggest, question is WHY. Why the irregular bedtimes - does the child resist sleep (lots of SEN children do), is the home a chaotic environment (already known to affect behaviour), do the parents have difficulties that are preventing more organisation (parental difficulties are known to affect behaviour), is the family over programed (ie doing too many evening activities.)
The article states that regularising bedtimes improved behaviour - but what else has changed as well as bedtime? If the family time more organised, less activities, are the parents being supported and helped?
Looking at my own children I can see a couple of things -
reducing M's night terrors hasn't improved daytime behaviour.
J is no calmer when he has a full nights sleep.
A is happier now she gets a good nights sleep.
L is a grumpy teen ;) regardless of amounts of sleep.
I think, therefore, that for an NT child, getting enough sleep matters. For a child with additional needs getting more sleep won't "fix them."
That's all fine and dandy, but so far three people have pointed this article out to me as a way to help my kids. Because that is what they have read into it - get your children in bed at a sensible time and all their issues will melt away.
That just leaves me feeling a bit like shouting "if it was as simple as putting them to bed on time I'd have done that years ago!"
Tuesday, 24 September 2013
It's not always easy . . .
Last week was the first time the kids were back at their regular multi-sports session after the summer, it was A's first session but M and J have been going for well over a year. They were all looking forward to it - so surely a good time would be had by all . . .
I learned after the session that M had been a bit intimidating and had hit someone. After a week of cogitating I thought I'd share how we deal with this sort of thing in general, and specifically how I dealt with it last week.
Firstly - I asked M to come to my room, where it is usually quiet and calm, we cuddled and I asked him in general terms about the session - was it fun, what had they done, what did he enjoy, that sort of thing. We talked for about five minutes, it "felt" like he had had a good time and been happy. I knew that he had come bouncing out of the session though - thoroughly hyped up and a bit OTT. As he hadn't volunteered anything I asked if anyone had got hurt - he answered no. That made everything else much more tricky. I asked if he hurt anyone, again no, had anyone got upset? No.
At this point I always run over what I actually know - in this case I trust both the parent and the child, and there was another person who mentioned the incident. In the past we have had manipulative children claim that M has done something that I am certain he hasn't. Once I knew he hadn't because he was sat beside me, not out on the field as the complainant claimed, other times there has been ambiguity, and that makes it tough to deal with.
So, there was nothing else to do but come straight out and ask - had he hurt anyone? No. How about by accident? Still no. X has said you hurt her - what happened? "I don't know. Is she alright?" A few more questions trying to work out when or how it might have happened still gave me no clues.
Now seems like a good time to talk about memory - specifically ASD memory. Quite often M is convinced that something happened a particular way, when I am sure it happened another way. For a long time I interpreted this as lying, but I don't think it is. M is absolutely convinced that he is recalling whatever it was accurately - when he does lie he is very obvious! From reading other peoples blogs, and various books, this is pretty common in those with ASD. It seems that so much happens without M being able to see cause and effect that his mind "fills in the blanks" - a little like persistence of vision when you drive past a fence with gaps, you see an unbroken landscape that is perhaps a little blurred. That is how M sees these events - he subconsciously fills in the gaps, then is convinced that this is the truth.
So, back to this particular incident . . . Before I could really work out how to avoid this sort of thing, I needed to work out why M had no idea anything had happened. Without going back to see, I can only guess but I can have a pretty educated guess. . . M is uncoordinated - when he runs arms and legs flail about rather randomly. If he is racing someone to somewhere or something he subconsciously pushes - I think this is a feature of ADHD and poor executive function (he acts without thinking). He doesn't look at peoples faces, and doesn't "get" body language. Lastly he is very good at tuning out the background - often you need to get his attention before starting to speak to him as he just won't register what is said around him.
When you put all those together, what I *think* probably happened is that he was racing to somewhere, either pushed past or accidentally bumped the young lady and just didn't realise, then he carried on to wherever he was going, and didn't see the result of what he had done.
So, first things first, I suggested to him what I thought may have happened. He agrees it's possible, but still isn't sure. We talked about trying to pay attention to people around you. We talked about not pushing, and thinking about how it would feel to be pushed - at this point the disconnect he has between the names of feelings and how they actually feel was apparent again. We talked about wanting everyone at the session to have fun, and how he couldn't dominate or they wouldn't have fun. We did go over not hitting, but that's well trodden ground.
Before this weeks session I reminded him of all of this, and he seems to have remembered what we talked about.
Now comes the really awkward admission though . . . I have no idea if it will help. M knows not to hit, and when he is calm and thinking he doesn't. When he gets over excited, or in the heat of the moment, he isn't able to go through that subconscious checklist of "Is this a good idea / what happened last time / what could go wrong/ will I get in trouble."
I have, however, done my best, done all I can think of, followed the "expert advice."
One last thing, though . . .
No matter how often it happens, no matter what happens, if my child does the wrong thing TELL ME! Too often people just don't tell us when stuff happens, and then it happens again and again. Eventually when I am told instead of trying to deal with a one off issue I am trying to stop an established behaviour - which is much harder! Even if it looks like I am doing nothing, I *will* do my best and try to stop the behaviour. Often, as with this incident, it is best to wait for the child to be calm and relaxed - no one ever learnt anything whilst they were in meltdown - so whilst it might look like nothing is happening "in the moment" when the storm passes the talking starts.
I learned after the session that M had been a bit intimidating and had hit someone. After a week of cogitating I thought I'd share how we deal with this sort of thing in general, and specifically how I dealt with it last week.
Firstly - I asked M to come to my room, where it is usually quiet and calm, we cuddled and I asked him in general terms about the session - was it fun, what had they done, what did he enjoy, that sort of thing. We talked for about five minutes, it "felt" like he had had a good time and been happy. I knew that he had come bouncing out of the session though - thoroughly hyped up and a bit OTT. As he hadn't volunteered anything I asked if anyone had got hurt - he answered no. That made everything else much more tricky. I asked if he hurt anyone, again no, had anyone got upset? No.
At this point I always run over what I actually know - in this case I trust both the parent and the child, and there was another person who mentioned the incident. In the past we have had manipulative children claim that M has done something that I am certain he hasn't. Once I knew he hadn't because he was sat beside me, not out on the field as the complainant claimed, other times there has been ambiguity, and that makes it tough to deal with.
So, there was nothing else to do but come straight out and ask - had he hurt anyone? No. How about by accident? Still no. X has said you hurt her - what happened? "I don't know. Is she alright?" A few more questions trying to work out when or how it might have happened still gave me no clues.
Now seems like a good time to talk about memory - specifically ASD memory. Quite often M is convinced that something happened a particular way, when I am sure it happened another way. For a long time I interpreted this as lying, but I don't think it is. M is absolutely convinced that he is recalling whatever it was accurately - when he does lie he is very obvious! From reading other peoples blogs, and various books, this is pretty common in those with ASD. It seems that so much happens without M being able to see cause and effect that his mind "fills in the blanks" - a little like persistence of vision when you drive past a fence with gaps, you see an unbroken landscape that is perhaps a little blurred. That is how M sees these events - he subconsciously fills in the gaps, then is convinced that this is the truth.
So, back to this particular incident . . . Before I could really work out how to avoid this sort of thing, I needed to work out why M had no idea anything had happened. Without going back to see, I can only guess but I can have a pretty educated guess. . . M is uncoordinated - when he runs arms and legs flail about rather randomly. If he is racing someone to somewhere or something he subconsciously pushes - I think this is a feature of ADHD and poor executive function (he acts without thinking). He doesn't look at peoples faces, and doesn't "get" body language. Lastly he is very good at tuning out the background - often you need to get his attention before starting to speak to him as he just won't register what is said around him.
When you put all those together, what I *think* probably happened is that he was racing to somewhere, either pushed past or accidentally bumped the young lady and just didn't realise, then he carried on to wherever he was going, and didn't see the result of what he had done.
So, first things first, I suggested to him what I thought may have happened. He agrees it's possible, but still isn't sure. We talked about trying to pay attention to people around you. We talked about not pushing, and thinking about how it would feel to be pushed - at this point the disconnect he has between the names of feelings and how they actually feel was apparent again. We talked about wanting everyone at the session to have fun, and how he couldn't dominate or they wouldn't have fun. We did go over not hitting, but that's well trodden ground.
Before this weeks session I reminded him of all of this, and he seems to have remembered what we talked about.
Now comes the really awkward admission though . . . I have no idea if it will help. M knows not to hit, and when he is calm and thinking he doesn't. When he gets over excited, or in the heat of the moment, he isn't able to go through that subconscious checklist of "Is this a good idea / what happened last time / what could go wrong/ will I get in trouble."
I have, however, done my best, done all I can think of, followed the "expert advice."
One last thing, though . . .
No matter how often it happens, no matter what happens, if my child does the wrong thing TELL ME! Too often people just don't tell us when stuff happens, and then it happens again and again. Eventually when I am told instead of trying to deal with a one off issue I am trying to stop an established behaviour - which is much harder! Even if it looks like I am doing nothing, I *will* do my best and try to stop the behaviour. Often, as with this incident, it is best to wait for the child to be calm and relaxed - no one ever learnt anything whilst they were in meltdown - so whilst it might look like nothing is happening "in the moment" when the storm passes the talking starts.
This week M managed to stand too close to someone and got whacked with a hockey stick . . . after a bit of crying (which was warranted, it was a heck of a lump) he went back in happily. As far as I know nothing else went wrong . . .
Sunday, 15 September 2013
Not just fun and games . . . .
When I was a child, playing a family board game meant playing Monopoly. The thought filled me with dread, and if we did eventually play my big sister would always cheat.
Now, with children of my own, playing games is an integral part of our lives. We have all learnt a lot from playing games together, more than most people realise is possible.
A key point is that the skills J is learning whilst playing games and having fun are directly transferable to “real life”. Taking turns? That one is obvious. Being gracious in defeat is less so – often as adults we debate something, and the decision made by a group is not what we wanted. As a child seeing the upside of not getting your own way helps in a wide range of situations – from choosing which game to play, which film to watch, whose turn it is first on the computer, which park we go to, down to decisions about food, who sits where in the car, who holds the dogs lead. Getting used to not “winning” but still being able to be happy really counts for a lot.
L (our eldest) is dyslexic. So reading has always been a chore for him. So many games we play have small amounts of reading – sometimes just a few words, at most a sentence or two– and when he was resisting any form of reading he would still read to play games. As a teenager L can often struggle both with having younger siblings, and with his brothers differences. Playing games together helps to build tolerance and understanding.
M (too many letters to list here!) has lots of
difficulties. He finds social
interaction can go wrong quite quickly and he has no idea why. Games give him a
structure to his interactions, and that lets him relax because he knows the
rules, and he knows how to function in the situation. Like J games have stretched M’s attention span, taught him to
take turns, and to be relaxed about the outcome of a game. He has also learnt to think ahead, to plan
before acting, to look for consequences of any particular move or play. Games have also taught him to budget his
pocket money, and take care of his possessions.
As a family, we find that we can spend time together over a game with all the kids taking part – from the 14 year old down to the 6 year old. Games give us so much more than I remember as a child . . . and the children don't even realise :)
In the next post I'll look at some of our favourite games, how they play and why we like them.
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.
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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