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 :)
Showing posts with label OCD. Show all posts
Showing posts with label OCD. Show all posts
Wednesday, 6 November 2013
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!
Subscribe to:
Posts (Atom)