One of the nice things about having four such different children is gaining a sense of perspective. I often hear (or read) parents espousing one particular way of doing something as the best, or only, way. As far as I can see, life is never that black and white - it is lived in the shades of grey in between. I almost called this blog "parenting in shades of grey", but recently that would have taken on a whole new meaning . . .
At the start of August A (now 6) decided it was high time she learned to read. She has known most of the letter names and their "typical" sounds for a while, but the task of putting that knowledge into practice seemed too hard (in her opinion). A while ago I bought a set of synthetic phonics books (from the Book People) - Read Write Inc by Ruth Miskin. A had been stuck on the first book of the first level, having shown a brief flare of interest when the parcel arrived, but not wanting to put any effort in. Suddenly, on August 1st, she decided it was time . . . now here we are three weeks later and she has read twenty stories in level one, ten in level two, five in level three and the first of level four.
She learned the phonemes (sounds) by a lot of hard work, but the putting them together has come easily - once she was ready. It would be really easy to extrapolate from this that - as a family - we use a synthetic phonics program and lots of practice. But that's just how A has done it . . .
Go back ten years, to when L was learning, and you will find we did things differently. Sort of. We started with letter sounds workbooks, but nothing ever stuck, we tried phonics based reading books, but it was not working. We tried "Peter and Jane" books - which use a whole word recognition system - but that got us nowhere. We tried words stuck to things . . . that didn't work either. I looked at reading schemes, phonics programmes, high frequency word lists, THRASS work, none of them seemed to have helped. But in the end each of them did help - a little. L is dyslexic, and he found matching the sounds to the letters hard work. Some how - through years of picking away at it, he learned. Each system added a tiny bit to his understanding, and eventually he managed to work it all out. Now at 14 1/2 L likes to read national Geographic and Focus - he likes non-fiction, and cutting edge knowledge.
If we look at the next child - M - we see a different way of learning all together. M likes routine, likes to know what is coming next, likes things that are linked. We played games to get the sounds sorted - M picked up a lot of them listening to L doing things - really we just cemented what he suspected. We read jolly phonics books, and did finger phonics activity books (that we had been given). We worked through a "whole word" reading scheme from the 70's that my mother gave us (1 2 3 and Away. The Village with Three Corners books), but it wasn't a quick thing. Whereas A has picked up reading in a matter of weeks, M wasn't confident until early last year (9 1/2 ish). He *could* read, but it was still sounding things out and slowly. M still prefers to be read to (now 11), but he is beginning to take books out with us to read if there is going to be waiting around, and reads silently and much more quickly.
Son number three - J - learned to read when no one was looking. And then he hid the fact he could read. When we started home edding I read a lot about how children would just effortlessly, magically, learn to read as long as you read to them and showed them you valued reading. Our home is full of books and my husband and I read voraciously, we have always read to the children. With the older two boys I had come to the conclusion that *maybe* some children just pick up reading, but not many! My small sample showed a lot of hard work was needed. J wasn't interested in doing workbooks or worksheets. He didn't like songs or rhymes. I was struggling to work out a way in. Then I realised he was reading instructions to games on the computer. And reading his DS games. And choosing TV programmes after checking the listings . . . but still he wouldn't read a book with me if I asked him to - we'd have wriggling, chair rocking, flopping on the table, but no actual reading. I took a deep breath and backed off. It was hard work to do that - the experience with the older two was so different, but I managed it. I realised that each time I tidied his room I'd find a pile of books hidden under J's bed - a good sign I hoped. I watched sneakily and yes, he was reading. I don't know how, and I don't know when, but some time before he hit 7 J had learned to read.
So, what does this mean for other people? Well . . . teaching reading has to be reflective of the child. With L there were physical difficulties to overcome and that needed time, encouragement and hard work. With M there was no magic fix - only sustained effort. For J backing off was the right thing to do. For A facilitating and having good materials on hand was right. There is no one true way. No magic effortless guaranteed path. Watch your child, go with what works, and have fun :)
Thursday, 22 August 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.
Wednesday, 7 August 2013
Introducing Mr J
On to son number 3 - J. . .
J is nine now, and as far as we can see pretty classically Autistic. Like M, J is going through the diagnosis process with Child and Adolescent Mental Health Services (CAMHs).
J was born by emergency C-section, at 40 weeks, and unlike a lot of mums out there I am convinced it was not only the right thing to do, but that it saved his life. As soon as my waters broke I *knew* something was not right. fifteen minutes after getting to the hospital they had agreed and the rest is history.
Only not quite. During everything that went on J was - we think - deprived of oxygen for a period of time. We lost the heart beat trace too, so his heart may have stopped. Once he was born it was clear to the doctors something wasn't right. It wasn't clear to me as I was unconscious ;). I think my husband probably knew well before J was born - he was preparing to come in and be there when the C-section was done but plans rapidly changed from just a local anaesthetic to full GA and lots of people being paged.
J had hypoxic ischaemic encephalopathy, and probably as a result his brain was very swollen for about three days. During that time he screamed, a lot, one single high pitched note until he needed to breathe, then he'd draw a huge shuddering breath and start again. He was in the neo natal intensive care unit, and he looked so wrong next to all those tiny premature babies. At 7 lb 9 oz he wasn't huge, but in that room he was a giant. Within a day he was moved to a small side room - his screams were distressing the tiny babies. He was on antibiotics, but otherwise just being monitored.
I'd lost a lot of blood, and ended up needing a 4 unit transfusion, but the pair of us were home six days later.
J developed pretty much as we'd expect, and apart from follow up appointments all was well.
From the time he could crawl J wanted to move. I think he wanted his own space. He didn't have preferred toys, I don't really remember him playing with anything at all. Life at this stage is a bit of a blur - J's older brother M was having trouble and that occupied a lot of my attention, and J was very self sufficient from very early on. He learned "baby signs" quickly, but pointed a lot at what he wanted.
Somewhere along the line we realised he was different. I don't know when, but I suspect it was a dawning realisation rather than a single moment of understanding. I remember being at a home ed meet in the grounds of a stately home. J was walking and kept going away from the group. Everyone told me to let him wander, he wouldn't go too far, so one day I "tested" that. J must have been about 18 months. I asked the other mums to watch the bigger two and then watched J go off, out of sight. Then I snuck up, hiding from him, and just watched. He ran. And ran. And ran. Not once did he look back. He went for about fifteen minutes. Not looking back, not talking to the people he passed, not stopping to look at things, just running. Then he got to the edge of the grounds and went out onto the pavement, turned left and carried on. That's when I stopped him, and decided we wouldn't be testing that theory again!
I can see now that J loves movement - now he's happiest on his bike, just cycling near home. He also loves to be on his own. When we go to groups he will chat to the adults, spend a little time with the children then need to go off on his own for a bit. We have come to an understanding, and as long as he can find that space he doesn't go too far. He tends to come back, periodically to say hi to me, chat to the other adults, then he may - or may not - go back to the other children.
We have other issues with J too - some are good, others not so much.
J is totally, brutally, honest. Every now and then he will say something totally true, but utterly unsayable to someone. Like the time he told his cousin her b**bs were too big because he bounced off them when he tried to hug her. Or when he told his uncle to eat less and exercise more so he wouldn't die as young. There are many other times, but those show what I mean ;) He also has no concept of someone being "a stranger" and will tell anyone anything. Or, somedays, everyone gets told everything. He has interests that he can talk about for hours, not noticing that the other person isn't interested. He doesn't *get* non verbal cues, has no idea of personal space. He can't do eye contact.
But there are good things too. J's mind is quick - so quick it leaves me behind sometimes. He is the proverbial sponge - absorbing information very easily, and remembering its meaning rather than repeating by rote. Somehow he taught himself to read. I don't actually know when, and I don't know how. I was trying to teach him, he was resisting. I stopped, and then a while later realised he was reading - instructions for games, websites over my shoulder, names of TV programmes, all sorts of stuff. In a similar way he has taught himself to count in 2's, 3's, 4's, 5's, 6's, 8's, 9's, 10's, 16's, 100's, and probably a whole lot more. He can do addition, subtraction, multiplication, division, fractions. He can cook pretty well, he can read a map. All self taught, when he was ready and willing he sorted it out himself.
We struggle with "formal" work, J finds writing hard, his concentration is poor if he hasn't chosen the task, so for the moment we are just letting him lead, and running to keep up.
When J was six I took him to the GP, because I was worried. The GP dismissed all my worries with the statement "Well as he never sees other children how can he make friends." Home ed was blamed for everything. I was floored - it was the first time I had encountered that attitude, and I was woefully unprepared. We left with a referral for a hearing test and that was it.
The Audiologist, however, was awesome. She spotted J was not quite right when he needed her to be totally precise with her instructions, and when his hearing was fine we talked, and she referred us on to the community paediatrician. He was OK, but not great. We had a couple of appointments and ended up with an ADOS assessment (an Autism diagnostic tool) Due to one sentence J was diagnosed as having problems but not Autism - and somehow that was all. No actual help, a few book suggestions and discharged.
The point that "showed" J wasn't autistic was when he knew one action figure would be cross if the other stole her shoes. About a year ago I was talking with J about an incident that had happened when he was unkind to his little sister. I asked how she felt and J said "Angry". I asked how he would feel if she did whatever it was to him and he pulled a face and waved his arms around in an angry way. I asked if that meant he would be angry and he said "how am I meant to know? I just feel" and then did it again. Further talking showed that whilst J knew certain actions resulted in certain feelings, he had no idea how those feelings actually felt. And he had no names for his own feelings and emotional responses - there was a complete disconnect between the words and the feelings.
With that in mind we decided to revisit the idea of a diagnosis. We asked our GP (a different doctor by now) just to refer us straight to CAMHs, which he did.
We saw a nurse at CAMHs - J and I first of all, and in that appointment she told me she could see "points of concern", and wondered about the "not-autism" diagnosis. We filled in their forms, my husband and I went back for another appointment, and now we are waiting. J will have the same group assessment that his older brother M had but this time we have had to wait 8 months so far.
I will add further posts about J's diagnosis process once something more happens.
J is nine now, and as far as we can see pretty classically Autistic. Like M, J is going through the diagnosis process with Child and Adolescent Mental Health Services (CAMHs).
J was born by emergency C-section, at 40 weeks, and unlike a lot of mums out there I am convinced it was not only the right thing to do, but that it saved his life. As soon as my waters broke I *knew* something was not right. fifteen minutes after getting to the hospital they had agreed and the rest is history.
Only not quite. During everything that went on J was - we think - deprived of oxygen for a period of time. We lost the heart beat trace too, so his heart may have stopped. Once he was born it was clear to the doctors something wasn't right. It wasn't clear to me as I was unconscious ;). I think my husband probably knew well before J was born - he was preparing to come in and be there when the C-section was done but plans rapidly changed from just a local anaesthetic to full GA and lots of people being paged.
J had hypoxic ischaemic encephalopathy, and probably as a result his brain was very swollen for about three days. During that time he screamed, a lot, one single high pitched note until he needed to breathe, then he'd draw a huge shuddering breath and start again. He was in the neo natal intensive care unit, and he looked so wrong next to all those tiny premature babies. At 7 lb 9 oz he wasn't huge, but in that room he was a giant. Within a day he was moved to a small side room - his screams were distressing the tiny babies. He was on antibiotics, but otherwise just being monitored.
I'd lost a lot of blood, and ended up needing a 4 unit transfusion, but the pair of us were home six days later.
J developed pretty much as we'd expect, and apart from follow up appointments all was well.
From the time he could crawl J wanted to move. I think he wanted his own space. He didn't have preferred toys, I don't really remember him playing with anything at all. Life at this stage is a bit of a blur - J's older brother M was having trouble and that occupied a lot of my attention, and J was very self sufficient from very early on. He learned "baby signs" quickly, but pointed a lot at what he wanted.
Somewhere along the line we realised he was different. I don't know when, but I suspect it was a dawning realisation rather than a single moment of understanding. I remember being at a home ed meet in the grounds of a stately home. J was walking and kept going away from the group. Everyone told me to let him wander, he wouldn't go too far, so one day I "tested" that. J must have been about 18 months. I asked the other mums to watch the bigger two and then watched J go off, out of sight. Then I snuck up, hiding from him, and just watched. He ran. And ran. And ran. Not once did he look back. He went for about fifteen minutes. Not looking back, not talking to the people he passed, not stopping to look at things, just running. Then he got to the edge of the grounds and went out onto the pavement, turned left and carried on. That's when I stopped him, and decided we wouldn't be testing that theory again!
I can see now that J loves movement - now he's happiest on his bike, just cycling near home. He also loves to be on his own. When we go to groups he will chat to the adults, spend a little time with the children then need to go off on his own for a bit. We have come to an understanding, and as long as he can find that space he doesn't go too far. He tends to come back, periodically to say hi to me, chat to the other adults, then he may - or may not - go back to the other children.
We have other issues with J too - some are good, others not so much.
J is totally, brutally, honest. Every now and then he will say something totally true, but utterly unsayable to someone. Like the time he told his cousin her b**bs were too big because he bounced off them when he tried to hug her. Or when he told his uncle to eat less and exercise more so he wouldn't die as young. There are many other times, but those show what I mean ;) He also has no concept of someone being "a stranger" and will tell anyone anything. Or, somedays, everyone gets told everything. He has interests that he can talk about for hours, not noticing that the other person isn't interested. He doesn't *get* non verbal cues, has no idea of personal space. He can't do eye contact.
But there are good things too. J's mind is quick - so quick it leaves me behind sometimes. He is the proverbial sponge - absorbing information very easily, and remembering its meaning rather than repeating by rote. Somehow he taught himself to read. I don't actually know when, and I don't know how. I was trying to teach him, he was resisting. I stopped, and then a while later realised he was reading - instructions for games, websites over my shoulder, names of TV programmes, all sorts of stuff. In a similar way he has taught himself to count in 2's, 3's, 4's, 5's, 6's, 8's, 9's, 10's, 16's, 100's, and probably a whole lot more. He can do addition, subtraction, multiplication, division, fractions. He can cook pretty well, he can read a map. All self taught, when he was ready and willing he sorted it out himself.
We struggle with "formal" work, J finds writing hard, his concentration is poor if he hasn't chosen the task, so for the moment we are just letting him lead, and running to keep up.
When J was six I took him to the GP, because I was worried. The GP dismissed all my worries with the statement "Well as he never sees other children how can he make friends." Home ed was blamed for everything. I was floored - it was the first time I had encountered that attitude, and I was woefully unprepared. We left with a referral for a hearing test and that was it.
The Audiologist, however, was awesome. She spotted J was not quite right when he needed her to be totally precise with her instructions, and when his hearing was fine we talked, and she referred us on to the community paediatrician. He was OK, but not great. We had a couple of appointments and ended up with an ADOS assessment (an Autism diagnostic tool) Due to one sentence J was diagnosed as having problems but not Autism - and somehow that was all. No actual help, a few book suggestions and discharged.
The point that "showed" J wasn't autistic was when he knew one action figure would be cross if the other stole her shoes. About a year ago I was talking with J about an incident that had happened when he was unkind to his little sister. I asked how she felt and J said "Angry". I asked how he would feel if she did whatever it was to him and he pulled a face and waved his arms around in an angry way. I asked if that meant he would be angry and he said "how am I meant to know? I just feel" and then did it again. Further talking showed that whilst J knew certain actions resulted in certain feelings, he had no idea how those feelings actually felt. And he had no names for his own feelings and emotional responses - there was a complete disconnect between the words and the feelings.
With that in mind we decided to revisit the idea of a diagnosis. We asked our GP (a different doctor by now) just to refer us straight to CAMHs, which he did.
We saw a nurse at CAMHs - J and I first of all, and in that appointment she told me she could see "points of concern", and wondered about the "not-autism" diagnosis. We filled in their forms, my husband and I went back for another appointment, and now we are waiting. J will have the same group assessment that his older brother M had but this time we have had to wait 8 months so far.
I will add further posts about J's diagnosis process once something more happens.
Subscribe to:
Posts (Atom)