Disclaimer: dear casual reader, this post is a bit technical, mostly posts here are funner :)
Disclaimer 2: these are self-administered and self-scored tests. They are not intended as a diagnosis but as a screen and I have completed them for interest as Tokoroth is already in the middle of the series of diagnostic assessments. The fact that I score in the BAP range is entirely consistent with current theory.
I spent a lot of today calculating Tokoroth's Autism Spectrum Quotient (AQ). The problem is that he's too old for the Q-CHAT (Quantative Checklist for Autism in Toddlers) which is ideally applied pre-24 months and too young for the AQ for Children.
All of the tests are available to download from Simon Baron-Cohen's website: http://www.autismresearchcentre.com/ which is a website I wish I had found a lot sooner. I discovered it because I am reading his latest book which I suspect my current SK124 OU course is based on.
I decided to run with the Q-CHAT but retrospectively answer his questions as he was at 2 with some annotation of where there has been change.
http://dl.dropbox.com/u/41893/Completed-Q-CHAT.pdf (score: 62/100)
(the red ticks are the answers for his brother, Little M, which I used as a control set of answers from a typically developing child)
I then ran the standard AQ-Child for children 4+ years
http://dl.dropbox.com/u/41893/Completed-AQ%20-Child.pdf (score: 105/150)
and finally, as advised I ran the AQ-Adult against myself:
http://dl.dropbox.com/u/41893/Completed-AQ-Adult.pdf (score: 27-31/50)
The reason I have 27-31 is that I kept re-interpeting the questions and that's the range I fell between. Interestingly it turned out I wasn't the only one self testing and a conversation on Twitter (with @melph) led me to an online resource for the same test on wired.com.
In the first major trial using the (adult) test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. So, now I have tests and scores. What I don't have, yet, is a clear understanding of how to interpret the scores for the Q-CHAT and the AQ-Child.
I think it's fair to say that Tokoroth scores pretty high and I am nudging but not on the disorder side of the spectrum. I was a little higher than I expected but the test means very little on it's own. What was quite funny was that after running the tests I took a break to build some Lego with Little M. I found this very relaxing. When I returned to the ARC website I found a link on Lego therapy!
[This post is a work in progress]
edit: Interesting, according to the book, between 27 and 32 is a classic range for BAP.
Tuesday 29 December 2009
Echolalia 2 - Paint!
(click on the title to play the audio)
There must be an easier way to embed audio, I'll work on that. Again, the context here is bedtime, sat up watching a little bit of Tom and Jerry ahead of wind down and reading time. I try to engage with Tokoroth using his wallchart to try and encourage him to count and verbalise. I have some success but it goes predictably wrong along the way. Some of his responses to his questions make me smile a lot.
The good news here is that echolalia like this is a sign of him trying to speak, he just doesn't quite know how to form the words he needs. It's very similar to the babble you hear from a toddler when they process words they have heard in the cots/beds in the early hours.
The speech delay website I found earlier makes it clear that this condition can exist outside of autism and given that his repetitive behaviour is quite low this will be an avenue that gets explored, indeed it is the SALT (speech and language therapist) that will perform his next assessment in the nursery,
There must be an easier way to embed audio, I'll work on that. Again, the context here is bedtime, sat up watching a little bit of Tom and Jerry ahead of wind down and reading time. I try to engage with Tokoroth using his wallchart to try and encourage him to count and verbalise. I have some success but it goes predictably wrong along the way. Some of his responses to his questions make me smile a lot.
The good news here is that echolalia like this is a sign of him trying to speak, he just doesn't quite know how to form the words he needs. It's very similar to the babble you hear from a toddler when they process words they have heard in the cots/beds in the early hours.
The speech delay website I found earlier makes it clear that this condition can exist outside of autism and given that his repetitive behaviour is quite low this will be an avenue that gets explored, indeed it is the SALT (speech and language therapist) that will perform his next assessment in the nursery,
Monday 28 December 2009
Echolalia - Story time (audio)
(click on the title to listen to the recording)
(context: bedtime, sat up in bed 'babbling' as I got him ready for bed)
I think I have given up on the 'big' post on Echolalia and have decided to break it into smaller posts. The purpose of this to record snippets of Tokoroth's speech, his receptive and generative speech specifically and to capture his echolalia, if that's even what this is. Remember I am making observations based on what I have read from sources that I trust. I am a lay person therefore it is entirely likely I don't have a clue what I am talking about. Caveat over, let's begin.
What is echolalia?
The flippant answer would be: "what is echolalia?" because it is, simply stated, the repeating of speech as opposed to the generation of speech. Immediate echolalia is literally repeating back the question as a form of answer, Delayed echolalia is the repeating back of phrases (heard on the TV or from people) randomly and out of context days, weeks or months later.
There is a quite detailed explanation of the disorder on a US 'special ed' website which points out this sort of babble is quite normal in toddlers:
(context: bedtime, sat up in bed 'babbling' as I got him ready for bed)
I think I have given up on the 'big' post on Echolalia and have decided to break it into smaller posts. The purpose of this to record snippets of Tokoroth's speech, his receptive and generative speech specifically and to capture his echolalia, if that's even what this is. Remember I am making observations based on what I have read from sources that I trust. I am a lay person therefore it is entirely likely I don't have a clue what I am talking about. Caveat over, let's begin.
What is echolalia?
The flippant answer would be: "what is echolalia?" because it is, simply stated, the repeating of speech as opposed to the generation of speech. Immediate echolalia is literally repeating back the question as a form of answer, Delayed echolalia is the repeating back of phrases (heard on the TV or from people) randomly and out of context days, weeks or months later.
There is a quite detailed explanation of the disorder on a US 'special ed' website which points out this sort of babble is quite normal in toddlers:
"Echolalia occurs in normal language development yet decreases as the typically developing child gains more spontaneous generative language. In children with autism, echolalia occurs with greater frequency and lasts for a longer period of time as the child with autism typically experiences significant difficulty developing spontaneous, generative language skills."Also on that website is an example which actually applies 100% to Tokoroth:
A child with autism is very anxious about where he will be going after school as the destination changes frequently. He says repetitively throughout the day, "Go to grandmas?"
He says that. Exactly that and, probably, for exactly that reason. Right, short and sweet, example one of his echolalia and an explanation of what it is. I intend to collect more examples to feed into his, eventual, multidisciplinary assessment.
Sunday 20 December 2009
Mind The Gap
The community nurse approved (or at least went along with) our decision to keep Tokoroth in the Montessori and also seemed impressed by the approach they had taken towards inclusivity. This is apparently quite exceptional for a private nursery that doesn't get any allowance for special needs children.
I have asked the nursery to obtain a written copy of the assessment so it can be included in the overall diagnosis by the pediatrician when we eventually proceed to the Child Development Clinic assessment stage. We have now re-booked his 'official' in-nursery assessment to take place at the Montessori.
Given current modern thinking on intervention this means we should have a statement of special educational needs well before he actually starts Reception. We're pretty lucky here that we had an inkling of Tokoroth being on the spectrum and going straight to the health centre where we struck gold with the community nurse who assessed him. Speaking last night to the mother of a child recently diagnosed with Asperger's (or HFA depending on the day of the week and pediatrician they see) they made the classic mistake of seeing their GP first.
In fact, come to think of it, we also got derailed by our GP. We presented Tokoroth, aged 2, with what we perceived , correctly it turned out, as hypersensitivity. This was when I was still not fully convinced of a bigger problem because I only knew the diagnosis for classic autism and not the ASD sub-types. The community nurse may have actually suspected ahead of us and referred us to the GP to get Tokoroth referred to audiology. The nurse could have done this but the protocol is to go through the GP.
The GP looked at the letter from the community nurse, looked in his hears, clapped his hands a few times (I'm paraphrasing) and reported that his hearing was absolutely fine. The GP did not refer him to audiology. It was a year later that, once more, we presented Tokoroth back to the nurse with our increased awareness of a) there being a bigger problem and b) the likelihood that he was on the spectrum (ASD was, by then, on my radar).
The community nurse was incredibly annoyed that the GP had not carried out the referral. Hypersensitivity does not mean he can't hear or that he has any physical problem. Having satisfied himself of that he should still have carried out the referral a) because that's what he was asked to do and b) because hypersensitivy can be an indicator of other problems, i.e. autism.
So, even armed with knowledge and a bloody good health centre community nurse we lost a years worth of intervention because autism and other similar disorders are off the radar for many, but certainly not all, GPs. It's a known issue and it's being addressed. A GP can even miss her own son's autism.
I'm not being negative here because our GP is a good GP and the rest of the NHS machine around the ongoing assessment has been bloody good. I'm just aware that we had our own knowledge, a child psychologist in the family and a good health centre to keep pushing. I do wonder how many children taken to the GP by their parent fall through the cracks. As recently as 2002 over one in eight GPs said they would not know how and where to refer a patient with autistic spectrum disorder.
Anyway, for us all is going well and little Tokoroth grows into an ever more entertaining and amusing child every day. He is joining in play with other children, his delayed echolalia sits alongside an ever growing vocabulary and his repetitive behaviour is arguably more flexible more than mine currently is. We just keep walking the walk and see where we all end up.
I have asked the nursery to obtain a written copy of the assessment so it can be included in the overall diagnosis by the pediatrician when we eventually proceed to the Child Development Clinic assessment stage. We have now re-booked his 'official' in-nursery assessment to take place at the Montessori.
Given current modern thinking on intervention this means we should have a statement of special educational needs well before he actually starts Reception. We're pretty lucky here that we had an inkling of Tokoroth being on the spectrum and going straight to the health centre where we struck gold with the community nurse who assessed him. Speaking last night to the mother of a child recently diagnosed with Asperger's (or HFA depending on the day of the week and pediatrician they see) they made the classic mistake of seeing their GP first.
In fact, come to think of it, we also got derailed by our GP. We presented Tokoroth, aged 2, with what we perceived , correctly it turned out, as hypersensitivity. This was when I was still not fully convinced of a bigger problem because I only knew the diagnosis for classic autism and not the ASD sub-types. The community nurse may have actually suspected ahead of us and referred us to the GP to get Tokoroth referred to audiology. The nurse could have done this but the protocol is to go through the GP.
The GP looked at the letter from the community nurse, looked in his hears, clapped his hands a few times (I'm paraphrasing) and reported that his hearing was absolutely fine. The GP did not refer him to audiology. It was a year later that, once more, we presented Tokoroth back to the nurse with our increased awareness of a) there being a bigger problem and b) the likelihood that he was on the spectrum (ASD was, by then, on my radar).
The community nurse was incredibly annoyed that the GP had not carried out the referral. Hypersensitivity does not mean he can't hear or that he has any physical problem. Having satisfied himself of that he should still have carried out the referral a) because that's what he was asked to do and b) because hypersensitivy can be an indicator of other problems, i.e. autism.
So, even armed with knowledge and a bloody good health centre community nurse we lost a years worth of intervention because autism and other similar disorders are off the radar for many, but certainly not all, GPs. It's a known issue and it's being addressed. A GP can even miss her own son's autism.
I'm not being negative here because our GP is a good GP and the rest of the NHS machine around the ongoing assessment has been bloody good. I'm just aware that we had our own knowledge, a child psychologist in the family and a good health centre to keep pushing. I do wonder how many children taken to the GP by their parent fall through the cracks. As recently as 2002 over one in eight GPs said they would not know how and where to refer a patient with autistic spectrum disorder.
Anyway, for us all is going well and little Tokoroth grows into an ever more entertaining and amusing child every day. He is joining in play with other children, his delayed echolalia sits alongside an ever growing vocabulary and his repetitive behaviour is arguably more flexible more than mine currently is. We just keep walking the walk and see where we all end up.
Sunday 13 December 2009
Broader Autism Phenotypes
Spending the last few months reading about the suspected aetiology of autism, a lot of the theories about neurons, serotonin and oxycotin really make sense. I think anyone who lives with a child with autism, even if they are not a broader autism phenotype (BAP) themsleves will recognise aspects of their children's behaviour.
For me, as for many other parents of autistic children, learning about the continuum is a revelation but learning about BAP explains not just about the genetic link and the passing on of genes susceptible to autism but it starts to actually shine a light on your own behaviour. It was great to read this from that BAP link above:
For me, as for many other parents of autistic children, learning about the continuum is a revelation but learning about BAP explains not just about the genetic link and the passing on of genes susceptible to autism but it starts to actually shine a light on your own behaviour. It was great to read this from that BAP link above:
“bored, sensitive, and isolated as I observed the social culture around me, feeling uncompelled to jump in and participate in what seemed superficially meaningless. I wasn’t entirely aloof, but I preferred being with only one friend at a time. Too many people made me edgy. Rehearsing social situations in my mind over and over and, but both before and after they had occurred, sometimes speaking them aloud to myself."I'm still learning about the definition of BAP but informally taking some of the tests I score highly for inclusion in this category and this makes much more sense than my earlier thoughts about being on the spectrum myself, which wasn't quite a fit. I guess it's not really important in the bigger picture of getting Tokoroth the right help but as we look for answers in one place we start to ask questions in others.
Relax!
A couple of months back I think I was worried that diagnosis was taking too long while still being very aware that, for us, the process of assessment and the path towards diagnosis was put in place much more swiftly for us because a) we already suspected ASD and weren't afraid to raise it with with the health worker and b) because that same health worker has been amazing in referring him to audiology, the speech and language therapist (who was herself amazing) and organising the in-nursery assessment all within a few short months. For some people this process can take a lot, lot longer.
It wasn't enough for me though as I backflipped and somersaulted through denial and acceptance, yes he is, no he isn't, is, isn't, is, isn't, aaaaagh! I just wanted to know. But more recently, as some semblance of sanity kicked in, or what approximates sanity for me, I started to take in some of the course material I have been learning on SK124 along with the stories I was reading on other parent's blogs along with first hand accounts from people writing about their experience of autism, and started to calm down a bit.
It doesn't matter one iota if we get a diagnosis now, at age three, because they can sellotape a label to his head that says "PDD-NOS" or "HFA - Handle With Care" but we won't have a clue what sort of thirteen year old the three year old will become until, well, until he's thirteen which was exactly the point made in the comment I quoted below.
I decided that it's silly to stress over labels and diagnosis, all that's good for is getting him help in the classroom and they are already doing that sans-label. It's also entirely unneccesary to feel that I have to coax him into our world when it's clearly so much more fun in his world.
It wasn't enough for me though as I backflipped and somersaulted through denial and acceptance, yes he is, no he isn't, is, isn't, is, isn't, aaaaagh! I just wanted to know. But more recently, as some semblance of sanity kicked in, or what approximates sanity for me, I started to take in some of the course material I have been learning on SK124 along with the stories I was reading on other parent's blogs along with first hand accounts from people writing about their experience of autism, and started to calm down a bit.
It doesn't matter one iota if we get a diagnosis now, at age three, because they can sellotape a label to his head that says "PDD-NOS" or "HFA - Handle With Care" but we won't have a clue what sort of thirteen year old the three year old will become until, well, until he's thirteen which was exactly the point made in the comment I quoted below.
I decided that it's silly to stress over labels and diagnosis, all that's good for is getting him help in the classroom and they are already doing that sans-label. It's also entirely unneccesary to feel that I have to coax him into our world when it's clearly so much more fun in his world.
Wednesday 9 December 2009
Montessori
Ach. Quiet for weeks, then I can't stop. I have to get something off my chest though, something good, which I hadn't really realised was happening.
Tokoroth is at a Montessori nursery. It's not unusual for parents with autistic children to take this route to pre-school because of the way the sessions are structured
Based on the report and recommendations made by the specialist the Montessori have now, incredibly, involved his classmates in talking to him, involving him in their play, after the teachers briefed his classmates and have made including Tokoroth, in conversation and play, a big game for all of them.
The nursery weren't asked, or expected, to get involved in this process and no help over and above the style and format of their methodology was anticipated but, wow, just wow.
Tokoroth is at a Montessori nursery. It's not unusual for parents with autistic children to take this route to pre-school because of the way the sessions are structured
"...its method of education is characterised by emphasising self-directed activity on the part of the child, and clinical observation on the part of the teacher to stress the importance of adapting the child’s learning environment to his or her development level"They flagged with us that he wasn't integrating well with his peers (he tolerates other children but just ignores them most of the time as he doesn't realise they *want* to speak or play with him) and once they realised we already suspected ASD and were following a path towards diagnosis they organised an in-nursery assessment by a specialist.
Based on the report and recommendations made by the specialist the Montessori have now, incredibly, involved his classmates in talking to him, involving him in their play, after the teachers briefed his classmates and have made including Tokoroth, in conversation and play, a big game for all of them.
The nursery weren't asked, or expected, to get involved in this process and no help over and above the style and format of their methodology was anticipated but, wow, just wow.
Lovely comment
I've received some really nice comments from people, from friends and from people who are on a similar journey with their children. As I said before I feel that we're kind of lucky in many respects, he is such a strong and amazing character we are truly blessed (you can probably tell from my tone that he's tucked up in bed asleep) but I really value some of the insights that have been shared by others. This is a comment that was left on the blog a few posts back which I think is worth sharing.
"Just keep swimming, just keep swimming, just keep swimming, swimming swimming!"
"One thing I can observe is that we never know how things are going to go. Things are not linear. Looking at where our guy was at four, we could not have predicted were our guy would be at 14. We could not even have predicted roughly what things he would be best at. Here is a guy who was not speaking in anything near full sentences until age eight and at age 14 his French teacher tells me he is one of two or three kids in the class who really "get it" and there is nothing he likes better than talking with a bunch of his friends on Skype.If only *I* knew what approach I was taking. Something akin to Dory in Finding Nemo:
Mind you, what we might consider fairly simple questions like "Have you done your homework?" can be very difficult. Go figure. There is no point trying to predict other than to predict that, like everyone, with love and encouragement, our kids will grow.
I like your blog. The approach you are taking, seems to be the one that takes the people I've seen on this journey the furthest."
"Just keep swimming, just keep swimming, just keep swimming, swimming swimming!"
From Grandma
Little Tokoroth loves, LOVES, his grandmas and grandads. My Mum was looking after him yesterday and put him and Little M to bed. This update is from my Mum:
"Last night he got into bed and called me and patted the bed so I got in with him. Little chap gave me eye contact and a big grin as I lay with him and pulled up the covers.I actually credit my Mum and Dad, who look after him a lot, with helping him to emerge from his secret world and he is at his most outgoing and most fluent when he is with them. It would appear that you never reach a point in your life when you stop learning from your parents.
'Sing Grandma' said he, so in my usual off key way started off, little one joined in and when he didn't know words sang "la la la". I suggested he sang to me and he did so after a bit of thought and gave me eye contact the whole time, then proceeded to tell me a story.
I suggested to him that this might be Grandma's bedtime story and he thought this was very funny, jumped up, fell on top of me and had a giggling fit poking me to ake up' which we both thought was very funny.
Lovely half an hour and then he stayed put till I had bathed Little M and he just gazed at the ceiling peeping out from under covers when I popped in to check him, greeting us with a very bright 'Hello Grandma, Hello M.'
Beautiful child love him to bits. xx"
Tuesday 8 December 2009
There's never been a better time
I'm immersed in a world of blogs written by amazing people with amazing stories and who are overcoming way greater odds than I am faced with. I was reminded, again, of how lucky I am by spending a couple of hours with Tokoroth this morning where he was trying his best to communicate, flashing a smile at me and holding that eye contact for just a bit longer than the usual fleeting second.
I'm not blind to the challenges we all face nor am I regressing back into the recent phase of denial but reading blogs by people who walk the same road (I'm looking at you Whitterer) make me feel like my son (and his family) are part of a new community. That there are other people out there who share the same offbeat humour and write blogs about their own, or their children's, struggle with autism, that make me giggle like a girl make it all just so much more manageable.
Having shared this diary with some friends on Facebook I have been overwhelmed with the messages sharing stories of friends who have children diagnosed with autism/AS/ASD and also from people facing challenges with their children who have not realised there is an explanation for their children's behaviour.
My friend of many years is a special needs teacher. He teaches science to secondary school children with a variety of developmental disorders. I loved his comment to me today as we talked about how much more is known about the aetiology of autism and ways to manage it:
"You're lucky, really, there's never been a better time to be autistic." =)
I'm not blind to the challenges we all face nor am I regressing back into the recent phase of denial but reading blogs by people who walk the same road (I'm looking at you Whitterer) make me feel like my son (and his family) are part of a new community. That there are other people out there who share the same offbeat humour and write blogs about their own, or their children's, struggle with autism, that make me giggle like a girl make it all just so much more manageable.
Having shared this diary with some friends on Facebook I have been overwhelmed with the messages sharing stories of friends who have children diagnosed with autism/AS/ASD and also from people facing challenges with their children who have not realised there is an explanation for their children's behaviour.
My friend of many years is a special needs teacher. He teaches science to secondary school children with a variety of developmental disorders. I loved his comment to me today as we talked about how much more is known about the aetiology of autism and ways to manage it:
"You're lucky, really, there's never been a better time to be autistic." =)
Sunday 6 December 2009
The baby that keeps on giving
"It's like having a child that's forever 15 months old" - Tokoroth's Mum, yesterday.
The denial I have been experiencing recently stems, in part I think, from the fact that my son is perfectly developing in terms of vocabulary and many other developmental milestones for an under two. The problem is that he is three and half.
People who meet Tokoroth, or observe him playing, think he's lovely. He doesn't exhibit any of the repetitive behaviours (hand flapping, spinning, etc) that tend to make people shy away and he just seems quietly attentive to his drawing or playing, a little shy and reluctant to talk. "Cute", "adorable" and "lovely" are the words people use to describe him (parents, teachers and brothers are perhaps a little more reserved!).
Two things spring immediately to mind. If he spends the next twenty years of his life just a couple of years behind then with good schooling I don't see too much of a problem, perhaps academically, perhaps a little socially, but manageable.
The biggest fear I have currently was vocalised perfectly by his mum yesterday and that it is he will forever be a child trapped in an adult's body (not that any of us completely escape that as Shiny Biscuit points out on her blog).
Sat in a restaurant yesterday our quiet, reserved son didn't attract much attention on account of him doing a passable impression of a very well behaved two year old. Roll on ten or twenty years and behaviour that is endearing today could be perceived as socially awkward.
I'm really not going to have any answers anytime soon even if he receives a diagnosis in the next six months it will be years before we really know if he will be capable of living life as an independent adult.
A harsh reminder at the end of the day of the gap between the Little M and the Tokoroth. Little M spotted this picture taken in the summer of 2007 at a party celebrating Little M's 3rd birthday. Tokoroth is less than eighteen months old in this picture and it's memorably prior to noticeable regression (the point in time when many autistic children appear to stop progressing or actually regress developmentally).
When Little M saw the picture he recalled how (more than two years ago) he saw his friends here, what their names were and what he did and what certain outcomes were from that day.
Tokoroth had a party for his third birthday. I am of the opinion that although he enjoyed the day he has no recollection of the event or that even if he does that I will ever hear him recall it in any way shape or form. I remember how Little M raved about his day out on the way home and how he told his friends about it the next day at nursery.
Tokoroth is six months older now than Little M was then. He doesn't have friends at nursery and we've never had a proper conversation about anything. All of a sudden it's all a bit overwhelming.
On the bright side little Tokoroth is an absolutely awesome, lovely, healthy, playful child who has been an absolute joy to be with this weekend and, despite being different, he fills me with love and pride. In the grand scheme of things, really, we're all quite lucky and much better off than some. His biggest handicap is having me for a Dad! =)
The denial I have been experiencing recently stems, in part I think, from the fact that my son is perfectly developing in terms of vocabulary and many other developmental milestones for an under two. The problem is that he is three and half.
People who meet Tokoroth, or observe him playing, think he's lovely. He doesn't exhibit any of the repetitive behaviours (hand flapping, spinning, etc) that tend to make people shy away and he just seems quietly attentive to his drawing or playing, a little shy and reluctant to talk. "Cute", "adorable" and "lovely" are the words people use to describe him (parents, teachers and brothers are perhaps a little more reserved!).
Two things spring immediately to mind. If he spends the next twenty years of his life just a couple of years behind then with good schooling I don't see too much of a problem, perhaps academically, perhaps a little socially, but manageable.
The biggest fear I have currently was vocalised perfectly by his mum yesterday and that it is he will forever be a child trapped in an adult's body (not that any of us completely escape that as Shiny Biscuit points out on her blog).
Sat in a restaurant yesterday our quiet, reserved son didn't attract much attention on account of him doing a passable impression of a very well behaved two year old. Roll on ten or twenty years and behaviour that is endearing today could be perceived as socially awkward.
I'm really not going to have any answers anytime soon even if he receives a diagnosis in the next six months it will be years before we really know if he will be capable of living life as an independent adult.
A harsh reminder at the end of the day of the gap between the Little M and the Tokoroth. Little M spotted this picture taken in the summer of 2007 at a party celebrating Little M's 3rd birthday. Tokoroth is less than eighteen months old in this picture and it's memorably prior to noticeable regression (the point in time when many autistic children appear to stop progressing or actually regress developmentally).
When Little M saw the picture he recalled how (more than two years ago) he saw his friends here, what their names were and what he did and what certain outcomes were from that day.
Tokoroth had a party for his third birthday. I am of the opinion that although he enjoyed the day he has no recollection of the event or that even if he does that I will ever hear him recall it in any way shape or form. I remember how Little M raved about his day out on the way home and how he told his friends about it the next day at nursery.
Tokoroth is six months older now than Little M was then. He doesn't have friends at nursery and we've never had a proper conversation about anything. All of a sudden it's all a bit overwhelming.
On the bright side little Tokoroth is an absolutely awesome, lovely, healthy, playful child who has been an absolute joy to be with this weekend and, despite being different, he fills me with love and pride. In the grand scheme of things, really, we're all quite lucky and much better off than some. His biggest handicap is having me for a Dad! =)
Thursday 3 December 2009
Is autism just the new ADHD?
I'm bookmarking this for interest, the whole article is not long and my mum will probably take an interest. Quoting the best bits.
Is autism just the new ADHD? - SmartPlanet:
"The real lesson here is we need to pay closer attention to individual children, as a society. Each one is unique, with unique strengths and weaknesses. Lumping them into groups, treating them as piles of identical symptom sets, does no one any good.
Autism may indeed be the new ADHD, the label du jour we need to give a kid the attention they deserve."
Is autism just the new ADHD? - SmartPlanet:
"The real lesson here is we need to pay closer attention to individual children, as a society. Each one is unique, with unique strengths and weaknesses. Lumping them into groups, treating them as piles of identical symptom sets, does no one any good.
Autism may indeed be the new ADHD, the label du jour we need to give a kid the attention they deserve."
Conversation. Kinda.
There is strong likelihood that as he passes through various diagnostic assessments that things I record here will help build a fuller picture for the teams assessing him. So I'm going to start carefully recording the communication I have with him. The Tokoroth will ask for food and drink. He is now 38 months old. This is what passes for a conversation:
"Do you want a drink?"
"Apple Juice, please."
"Here you are. Say 'thank you'"
"Straw!"
"You would like a straw?"
"Oh, yes please."
"What colour straw would you like?"
"I would like a yellow straw."
"Here you are. Say 'thank you'"
*Slurp*
I'll ask another question, something like "what do you want to do today?" and might, possibly get a single answer ("go Grandma's house") but mostly we'll wait a while in silence before Little M will remind me: "he doesn't really speak, Dad".
As worried as I have become though, mostly about his social future, something about his quiet reserved, observant brightness makes me feel less like he is impaired and more that I am, that I am asking questions that are beneath him, insulting almost. Maybe I should dig out that troublesome quadratic equation after all...
"Do you want a drink?"
"Apple Juice, please."
"Here you are. Say 'thank you'"
"Straw!"
"You would like a straw?"
"Oh, yes please."
"What colour straw would you like?"
"I would like a yellow straw."
"Here you are. Say 'thank you'"
*Slurp*
I'll ask another question, something like "what do you want to do today?" and might, possibly get a single answer ("go Grandma's house") but mostly we'll wait a while in silence before Little M will remind me: "he doesn't really speak, Dad".
As worried as I have become though, mostly about his social future, something about his quiet reserved, observant brightness makes me feel less like he is impaired and more that I am, that I am asking questions that are beneath him, insulting almost. Maybe I should dig out that troublesome quadratic equation after all...
Wednesday 2 December 2009
I always wanted a dog.
I like dogs. I always always wanted a dog as a child. My Dad had them but I didn't live with him. I had proper imaginary dogs until I was about 11 years old.
Spending a week hanging out and playing with The Tokoroth I realised how many similarities there were with having a pet dog. You play with a dog, you feed a dog, you walk a dog, you get nervous when it is walking by the road without a lead (note to Childline: he doesn't really have a lead), it makes a mess, you toilet train it, it comes in from outside and makes muddy prints before you rugby tackle it to the ground and so on. Yeah, The Tokoroth is just like a pet dog. Where it should be different is the communication. I mean most dogs, even the crazy ones will come if you call it.
Tokoroth does not come when you call his name. If you walked up to him and said his name he's most likely not to look up or acknowledge you. He's not deaf though. If you whispered "chocolate" while you were in the kitchen and he was in the office with the computer on full volume, he'd hear and he'd be there.
Selective hearing, just like a dog. You tell a dog there's a bone, he's there. You tell that dog not to take the bone on the sofa, all of a sudden he's a deaf dog.
You can talk to dogs, you can tell them about your day and they will listen, sometimes attentively and sometimes a bit distractedly as they bait the cat or play with a toy and, well, I think you can see where I'm going with this. So far, so analagous.
The problem occurs when you want feedback. You know? Those times you curly up with your favourite labrador and explain this quadratic equation you are having problems with (you don't?!) and they just look a bit blank. In fact you can explain or tell them anything and they'll happily listen, even look like they understand but they just won't help you solve it.
Here's an example. I spent part of tonight reading a story (George's Marvelous Medicine, Ronald Dahl, if you were interested) to Little M and Tokoroth. Little M pitched in, asked questions and clamoured to see any pictures. Tokoroth lay there looking somewhere between me and the ceiling neither engaged nor disengaged. Just quiet. I stopped reading and spoke to Tokoroth.
"How was your day?" He cocked his head, glanced at me.
"Did you go to school?" No response (he was at nursery).
"Did you see your friends?" No response.
"Did you see Grandma?" No response.
"What would you like for breakfast tomorrow?" No response.
I applied a control question:"Would you like a cup of water?" He replied to this "Oh, yes please!" in his curiously squeaky little voice.
Nothing wrong with his hearing. I've no idea if he understood all of the questions I asked, or not, or only answers the questions he wants to. Possibly a combination of both.
I'll spare anyone reading the science behind this but it's a classic impairment not just of speech, and of an ability to communicate but also to understand my desire for him to answer. Never mind though, he's curled up at the end of the bed making snuffly noises.
I always wanted a dog, right? :)
Spending a week hanging out and playing with The Tokoroth I realised how many similarities there were with having a pet dog. You play with a dog, you feed a dog, you walk a dog, you get nervous when it is walking by the road without a lead (note to Childline: he doesn't really have a lead), it makes a mess, you toilet train it, it comes in from outside and makes muddy prints before you rugby tackle it to the ground and so on. Yeah, The Tokoroth is just like a pet dog. Where it should be different is the communication. I mean most dogs, even the crazy ones will come if you call it.
Tokoroth does not come when you call his name. If you walked up to him and said his name he's most likely not to look up or acknowledge you. He's not deaf though. If you whispered "chocolate" while you were in the kitchen and he was in the office with the computer on full volume, he'd hear and he'd be there.
Selective hearing, just like a dog. You tell a dog there's a bone, he's there. You tell that dog not to take the bone on the sofa, all of a sudden he's a deaf dog.
You can talk to dogs, you can tell them about your day and they will listen, sometimes attentively and sometimes a bit distractedly as they bait the cat or play with a toy and, well, I think you can see where I'm going with this. So far, so analagous.
The problem occurs when you want feedback. You know? Those times you curly up with your favourite labrador and explain this quadratic equation you are having problems with (you don't?!) and they just look a bit blank. In fact you can explain or tell them anything and they'll happily listen, even look like they understand but they just won't help you solve it.
Here's an example. I spent part of tonight reading a story (George's Marvelous Medicine, Ronald Dahl, if you were interested) to Little M and Tokoroth. Little M pitched in, asked questions and clamoured to see any pictures. Tokoroth lay there looking somewhere between me and the ceiling neither engaged nor disengaged. Just quiet. I stopped reading and spoke to Tokoroth.
"How was your day?" He cocked his head, glanced at me.
"Did you go to school?" No response (he was at nursery).
"Did you see your friends?" No response.
"Did you see Grandma?" No response.
"What would you like for breakfast tomorrow?" No response.
I applied a control question:"Would you like a cup of water?" He replied to this "Oh, yes please!" in his curiously squeaky little voice.
Nothing wrong with his hearing. I've no idea if he understood all of the questions I asked, or not, or only answers the questions he wants to. Possibly a combination of both.
I'll spare anyone reading the science behind this but it's a classic impairment not just of speech, and of an ability to communicate but also to understand my desire for him to answer. Never mind though, he's curled up at the end of the bed making snuffly noises.
I always wanted a dog, right? :)
/End Hiatus
Why haven't I written anything for ages? Good question. I set a bit of a precedent with the Space Shuttle post and sometimes I think I should just delete everything but that post and be done. That's what happens when your OCD and ADHD have a fight with your ASD (actually I'm probably, if anything, BAP but more on that later).
Lot's of things have stopped me writing. Mostly fear. Fear of the known and fear of the unknown. I have gone through a strange period of denial where I have started to think, or blindly hope, that The Tokoroth does not have anything wrong with him. This is because as a parent I have to consider a number of possible outcomes about the severity of his disorder. No matter which way the dice rolls it's likely he's going to end up with a Statement of Special Needs. At best he'll be a in a regular school but he'll be 'different'. Different kids get bullied. Fact. Autistic kids get bullied. Fact. Some of them can't even verbalise this enough to tell their parents or carers. All of a sudden I'm sad and scared.
This kid is beautiful, I love him, he's my son. If someone bullies him they really aren't going to want to meet me, even on a good day. But we aren't there yet. It might not happen. He might not even have a disorder, right? Hmmm.
The reason for radio silence for a while was because 'Mum' was away for a week in Barbados and I had a week off work looking after Home and Rugrats. In this time I spent a lot of one on one time with Tokoroth and built-up the strongest relationship I have had with him. In so many ways he is bright and funny that I started to do a "Oh yes he is, Oh no he isn't" dance in my head, one day thinking he was off the chart autistic and the next thinking he was absolutely-fine-just-a-bit-of-a-late-developer.
In fact if you use a Homer Simpson voice and say "he is, no he isn't, autistic, not autistic, yes he is, no he isn't, oh look a dog with two tails, wheeee!" you've pretty much nailed my current mental state.
Lot's of things have stopped me writing. Mostly fear. Fear of the known and fear of the unknown. I have gone through a strange period of denial where I have started to think, or blindly hope, that The Tokoroth does not have anything wrong with him. This is because as a parent I have to consider a number of possible outcomes about the severity of his disorder. No matter which way the dice rolls it's likely he's going to end up with a Statement of Special Needs. At best he'll be a in a regular school but he'll be 'different'. Different kids get bullied. Fact. Autistic kids get bullied. Fact. Some of them can't even verbalise this enough to tell their parents or carers. All of a sudden I'm sad and scared.
This kid is beautiful, I love him, he's my son. If someone bullies him they really aren't going to want to meet me, even on a good day. But we aren't there yet. It might not happen. He might not even have a disorder, right? Hmmm.
The reason for radio silence for a while was because 'Mum' was away for a week in Barbados and I had a week off work looking after Home and Rugrats. In this time I spent a lot of one on one time with Tokoroth and built-up the strongest relationship I have had with him. In so many ways he is bright and funny that I started to do a "Oh yes he is, Oh no he isn't" dance in my head, one day thinking he was off the chart autistic and the next thinking he was absolutely-fine-just-a-bit-of-a-late-developer.
In fact if you use a Homer Simpson voice and say "he is, no he isn't, autistic, not autistic, yes he is, no he isn't, oh look a dog with two tails, wheeee!" you've pretty much nailed my current mental state.
Thursday 19 November 2009
He ain't heavy...he's my table
Last night I put the kids to bed in the same bed. This is mostly on account of not having put the washing away which is piled up on the other bed. It had been a long and grueling day with The Special One. Little M was getting a bit grumpy with a very restless Tokoroth so I decided to give him The Talk.
I explained that Tokoroth was a bit different and that he needed Little M to look after him because as he got older other children might pick on him. Little M was immediately sombre and put his arms protectively around his little brother his chin set in fierce determination. I left them like that, little one curled up in his protective bigger brother's arms while I cleared up.
I went back to check on them a little later and Tokoroth was asleep. As it appeared that Tokoroth was not in any immediate danger and was now asleep, Little M had decided to make the most of having a little bother...
...by using him as a table. Give a little, take a little..
I explained that Tokoroth was a bit different and that he needed Little M to look after him because as he got older other children might pick on him. Little M was immediately sombre and put his arms protectively around his little brother his chin set in fierce determination. I left them like that, little one curled up in his protective bigger brother's arms while I cleared up.
I went back to check on them a little later and Tokoroth was asleep. As it appeared that Tokoroth was not in any immediate danger and was now asleep, Little M had decided to make the most of having a little bother...
...by using him as a table. Give a little, take a little..
Wednesday 18 November 2009
Aftermath
Once The Tokoroth was calmed, dressed and dispatched to nursery I took Little M to Starbucks so we could recover. I actually love breakfast time at home usually, today was an exception. Normally I am on full expert-mode for getting kids fed, dressed and out the door. Having failed on this occasion it was clear that we needed help. The help that comes in waxed cups.
Little M had a kids Hot Chocolate and I had a cappuccino. We sat calmly and chatted. I felt less of a failure as a parent. I made us late for school.
As we got to the door of his classroom I was mentally preparing some lame excuse for our lateness but as soon as the door opened Little M shouted up to the teacher: "we've been to Starbucks for hot chocolate!"
Busted!
Little M had a kids Hot Chocolate and I had a cappuccino. We sat calmly and chatted. I felt less of a failure as a parent. I made us late for school.
As we got to the door of his classroom I was mentally preparing some lame excuse for our lateness but as soon as the door opened Little M shouted up to the teacher: "we've been to Starbucks for hot chocolate!"
Busted!
Tantrums
Tantrums are normal behavior for most children and there is no reason why children with autism should be different. Tantrums are one of the most common problems in young children with autism. They appear to go into a state of rage, panic, anxiety or fear for no reason at all. What's worse though is that they last for ages and are inconsolable. All you can do is leave them to work through it...
Unless you are in a shopping centre. I leave you with this vision: yesterday I took him to the Galleria in Hatfield because I was looking for a shoe-rack (don't ask) and he threw a fit for no discernible reason. I picked him up and carried him through a crowd of curious onlookers as he arched his back, went rigid and cried "Help! Help!"
As an adult male I can tell you that holding a child who is shouting for help is NOT FUN! Probably the only reason no-one intervened is because the expression on my face was one of someone who would quite happily accepted intervention.
Unless you are in a shopping centre. I leave you with this vision: yesterday I took him to the Galleria in Hatfield because I was looking for a shoe-rack (don't ask) and he threw a fit for no discernible reason. I picked him up and carried him through a crowd of curious onlookers as he arched his back, went rigid and cried "Help! Help!"
As an adult male I can tell you that holding a child who is shouting for help is NOT FUN! Probably the only reason no-one intervened is because the expression on my face was one of someone who would quite happily accepted intervention.
Argh. That is all.
It's Day Three of home alone with the kids. I was looking forward to this week and I'm mostly enjoying it but The Tokoroth is being SPECTACULARLY hard work. You expect kids to be a bit naughty or a bit disruptive sometimes that comes with being a kid. Mostly thought it is possible to talk/negotiate or simply impose your will upon them. Not so, this week, with the little fella. In his mind there is something he needs or wants but he gets frustrated trying to communicate it and I get frustrated with not understanding.
It's a world of frustration.
This morning he should have been at nursery at 8:00. Normally he wakes at 6:00. Today he woke at 7:30 (and there was no way I was going to interrupt him sleeping). Usually he eats breakfast like a hungry hippo, this morning he would not eat. Most mornings he polishes off as much juice or smoothie as is put in front of him, but not this morning.
I bought him a new outfit for nursery but he kept pulling his clothes off. All the time he screamed and screamed. Something was upsetting him, something about the routine was not right. I had done something wrong, in the wrong order or the wrong way but he couldn't tell me. Luckily I had plenty of sleep so my patience reserves were high and slowly, very slowly, he calmed down.
I cannot take the credit for calming him down. Little M suggested putting Mario Karts for the Wii on and letting Tokoroth watch him play. This may have just been a ploy by Little M to get on the Wii before school but it worked (as a ploy and a method to calm Tokoroth).
At 8:15 he was dressed, not screaming, and happily clutching his bag; off to see his friends at school. I dropped him off at nursery and we stopped to look at some pictures and he happily chatted and counted and gave me a cuddle and a kiss before running into class.
That. was. gruelling.
It's a world of frustration.
This morning he should have been at nursery at 8:00. Normally he wakes at 6:00. Today he woke at 7:30 (and there was no way I was going to interrupt him sleeping). Usually he eats breakfast like a hungry hippo, this morning he would not eat. Most mornings he polishes off as much juice or smoothie as is put in front of him, but not this morning.
I bought him a new outfit for nursery but he kept pulling his clothes off. All the time he screamed and screamed. Something was upsetting him, something about the routine was not right. I had done something wrong, in the wrong order or the wrong way but he couldn't tell me. Luckily I had plenty of sleep so my patience reserves were high and slowly, very slowly, he calmed down.
I cannot take the credit for calming him down. Little M suggested putting Mario Karts for the Wii on and letting Tokoroth watch him play. This may have just been a ploy by Little M to get on the Wii before school but it worked (as a ploy and a method to calm Tokoroth).
At 8:15 he was dressed, not screaming, and happily clutching his bag; off to see his friends at school. I dropped him off at nursery and we stopped to look at some pictures and he happily chatted and counted and gave me a cuddle and a kiss before running into class.
That. was. gruelling.
Wednesday 11 November 2009
Onwards to the ADOS
It's a slow multi-step approach to diagnosis of autism. This does not really cause a problem, we are still more than early enough for timely intervention, and the multi agency approach has evolved over time and allows a number of observations and diagnostic interviews to feed into the final assessment.
Received a letter in the post today:
So far, my money is on Pervasive Developmental Disorder - Not Otherwise Specified or "not autism".
The way he is currently improving I'd even dare to hope that it's just delayed onset of language and he's just lazy like his Dad.
Received a letter in the post today:
Thank you for your referral to the community paediatric team. This referral was discussed together with all the avalable information from both home and school in our multi disciplinary community paediatric meeting.What this means is that in a very short time (compared to some) we will have moved from raising our concerns (and had them validated) to the final paediatrician-led ADOS which, so far as I know will lead to diagnosis.
It was agreed [the child] will be offered an appointment in the child developmental clinic in due course."
So far, my money is on Pervasive Developmental Disorder - Not Otherwise Specified or "not autism".
The way he is currently improving I'd even dare to hope that it's just delayed onset of language and he's just lazy like his Dad.
Monday 9 November 2009
Repetition, Repetition, Repetition.
Diagnosis, if and when it comes, of an autism spectrum disorder will be based on what is observed during the Autism Diagnostic Observation Schedule (ADOS). This allows for a formal diagnosis based on criteria which has been developed from Wing and Gould's original description of a 'triad of impairments'. A feature of these impairments is 'repetitive behaviour' often coupled with strange language.
I think that possibly qualifies.
However, if I can get him to add some lemon juice and pepper then he is already halfway to a tasty Thousand Island Dressing...
I think that possibly qualifies.
However, if I can get him to add some lemon juice and pepper then he is already halfway to a tasty Thousand Island Dressing...
Sunday 8 November 2009
The Space Shuttle
After the aborted attempt at taking him to the cinema, and having finished our coffee & cake, we were wandering around the complex when a high pitched jabbering alerted me to something exciting The Tokoroth who was on my shoulders. He practically hurled himself to the ground in his excitement to get nearer this thing:
The Space Shuttle.
Essentially it is an inflatable obstacle course where you enter at the back (left) and overcome a few inflatable obstacles before a fairly daunting rope ladder leads you to the top of a very steep slide. He's pretty good in playgrounds and quite a tough kid despite his very sensitive nature so I paid up the pre-requisite £1.50 and led him to the entrance at the back.
The first hurdle was getting him to accept that this was the way on and that he couldn't simply reverse climb up the slide. I solved this by waiting until some other children clambered on and gently, er, threw him on (just to get him started).
He did a great job of climbing over and under the various hurdles until he got to the rope ladder. He looked at it, touched it, watched the other kids climb it and then sat down. He than lay down while children both half his age and twice his age clambered over, fell on or tripped over him in their desperate enthusiasm to get to the slide. The Tokoroth wasn't sad, unhappy, dispirited or frustrated he just appeared not to care that there was a ladder. So he played quite happily in the bowels of the thing while kids almost a third of his age stepped over, or on, him stopping only to give him a curious glance before rushing on.
"People rushing on by..."
Many parents fell in by my side anxiously watching their kids attempt the ladder. Concerned Mums and Dads voicing their concern that their little boy or girl could never manage the ladder, yet they all did and their Mums and Dads squealed with delight and bounded around to watch their offspring jettison down the slide.
All the while my son just lay at the bottom of the ladder, laughing and chattering to himself occasionally wandering over to smile at me.
"Go on, son!" I urged "Go up the ladder and down the slide!" He looked at the ladder, looked at me, smiled and ran back out the way he had come. Never mind, I thought, he's enjoyed himself plenty. He clambered off, ran around for a bit, and then decided to jump back on and the whole process was repeated. For almost an hour. Not a single other child in that time, even children in nappies failed to make it up and over. If you dragged a stranger of the street who'd barely heard of the term and said "point out the autistic kid amongst that lot" it would not have been a hard task.
As I ruefully watched him being the very definition of "autistic aloneness" I suddenly became aware of him stood at the bottom of the ladder and before I could even say anything he had his foot on the first rung and was starting to climb.
I think at this point, in my head, was something akin to "Run, Forrest, Run!"
...and he's off...
I watched for a few moments as he faultlessly ascended the ladder until he was out of my sight and then ran around to the front of the Shuttle where the slide was. After what seemed like several long minutes a little head appeared at the top of the slide.
A pause, a big grin, and he flew down the slide squealing with delight. He barely paused to acknowledge me before running back to the beginning to do it all again and again (and again). I cried. I cried tears of happiness and I cried tears of relief. I couldn't tell anyone and, even if I could, I couldn't have got the words out, so I just stood there, like a stupid fool, and cried and watched him go round and round and round again like the first 45 minutes had never happened.
I think what I learned today is that wherever he's going, he'll get there, but in his own time.
The Space Shuttle.
Essentially it is an inflatable obstacle course where you enter at the back (left) and overcome a few inflatable obstacles before a fairly daunting rope ladder leads you to the top of a very steep slide. He's pretty good in playgrounds and quite a tough kid despite his very sensitive nature so I paid up the pre-requisite £1.50 and led him to the entrance at the back.
The first hurdle was getting him to accept that this was the way on and that he couldn't simply reverse climb up the slide. I solved this by waiting until some other children clambered on and gently, er, threw him on (just to get him started).
He did a great job of climbing over and under the various hurdles until he got to the rope ladder. He looked at it, touched it, watched the other kids climb it and then sat down. He than lay down while children both half his age and twice his age clambered over, fell on or tripped over him in their desperate enthusiasm to get to the slide. The Tokoroth wasn't sad, unhappy, dispirited or frustrated he just appeared not to care that there was a ladder. So he played quite happily in the bowels of the thing while kids almost a third of his age stepped over, or on, him stopping only to give him a curious glance before rushing on.
"People rushing on by..."
Many parents fell in by my side anxiously watching their kids attempt the ladder. Concerned Mums and Dads voicing their concern that their little boy or girl could never manage the ladder, yet they all did and their Mums and Dads squealed with delight and bounded around to watch their offspring jettison down the slide.
All the while my son just lay at the bottom of the ladder, laughing and chattering to himself occasionally wandering over to smile at me.
"Go on, son!" I urged "Go up the ladder and down the slide!" He looked at the ladder, looked at me, smiled and ran back out the way he had come. Never mind, I thought, he's enjoyed himself plenty. He clambered off, ran around for a bit, and then decided to jump back on and the whole process was repeated. For almost an hour. Not a single other child in that time, even children in nappies failed to make it up and over. If you dragged a stranger of the street who'd barely heard of the term and said "point out the autistic kid amongst that lot" it would not have been a hard task.
As I ruefully watched him being the very definition of "autistic aloneness" I suddenly became aware of him stood at the bottom of the ladder and before I could even say anything he had his foot on the first rung and was starting to climb.
I think at this point, in my head, was something akin to "Run, Forrest, Run!"
...and he's off...
I watched for a few moments as he faultlessly ascended the ladder until he was out of my sight and then ran around to the front of the Shuttle where the slide was. After what seemed like several long minutes a little head appeared at the top of the slide.
A pause, a big grin, and he flew down the slide squealing with delight. He barely paused to acknowledge me before running back to the beginning to do it all again and again (and again). I cried. I cried tears of happiness and I cried tears of relief. I couldn't tell anyone and, even if I could, I couldn't have got the words out, so I just stood there, like a stupid fool, and cried and watched him go round and round and round again like the first 45 minutes had never happened.
I think what I learned today is that wherever he's going, he'll get there, but in his own time.
The Cinema
When Little M was about 11 months old I took him to the cinema. He was a bit of a fidget but lasted most of the film. By the time he was 2 he was a cinema veteran. Popcorn was very useful as an aid to keeping him in his seat.
I have tried the same with Tokoroth but even today, aged 38 months, this little fella will not even go inside the auditorium. Even armed with popcorn, Fruit Shoot and Smarties, as soon as we walked into the darkened cinema he was like a cat being lowered into a bath. He almost set off the fire alarm mistaking the panel on the wall for a light switch!
As children half his age filed keenly and quietly in, he sat rigid by the entrance refusing to be coaxed, bribed or manhandled in to see the film. He's small for a three year old but almost impossible to impose your will on without a tantrum that would have Esther Rantzen in your face inside five seconds.
While this may appear to have nothing to do with autism (and it may not) it's just an example of how he is different from his siblings and some other children. It is though a good example of a criterion of autism spectrum disorders : peculiarities of hearing. Many children with autism have been suspected of being deaf at an early stage in their lives. Very few actually have a hearing loss, though they may not respond to their name and appear to be unaffected by audible changes in the environment. Conversely they can be more agitated than their peers by ordinary/loud everyday sounds. The Tokoroth puts a big fat tick in this box.
Although, maybe he'd just read the reviews and knew the film was crap...
I have tried the same with Tokoroth but even today, aged 38 months, this little fella will not even go inside the auditorium. Even armed with popcorn, Fruit Shoot and Smarties, as soon as we walked into the darkened cinema he was like a cat being lowered into a bath. He almost set off the fire alarm mistaking the panel on the wall for a light switch!
As children half his age filed keenly and quietly in, he sat rigid by the entrance refusing to be coaxed, bribed or manhandled in to see the film. He's small for a three year old but almost impossible to impose your will on without a tantrum that would have Esther Rantzen in your face inside five seconds.
Experiment abandoned, elder siblings left to watch the film, The Tokoroth and I retired to Costa Coffee in Waterstones where I caffeinated and unstressed while he quietly read and chatted happily to himself.
While this may appear to have nothing to do with autism (and it may not) it's just an example of how he is different from his siblings and some other children. It is though a good example of a criterion of autism spectrum disorders : peculiarities of hearing. Many children with autism have been suspected of being deaf at an early stage in their lives. Very few actually have a hearing loss, though they may not respond to their name and appear to be unaffected by audible changes in the environment. Conversely they can be more agitated than their peers by ordinary/loud everyday sounds. The Tokoroth puts a big fat tick in this box.
Although, maybe he'd just read the reviews and knew the film was crap...
Monday 2 November 2009
Little M(y)
The subject line of this post is courtesy of a rather 'fab' new Twitter homey: @shinybiscuit aka Katie Taylor. Neither of us use the word 'fab' ever. Honest.
Katie had read several posts on Twitter I wrote about 'Little M' and duly thought 'he' was a 'she' based on it sounding like Little My from The Moomins, an obscure Finnish cartoon.
This is funny for many reasons (well it was to us anyway) but it does bring a new character into the blog: older brother of The Tokoroth, Little M.
If he even has ASD, Tokoroth does not have it bad. Of the Triad of Impairments that define autism it's the communication that is really an issue. So when he recently woke crying at 5am it was obvious something was wrong but he was unable to articulate what the problem was. He was inconsolable and shouting something about 'fogs'.
Just as frustration (on both sides) was reaching fever pitch, Little M rolled over in his sleep and mumbled (quite theatrically):
"He just wants the Speckled Frog song!"
Little M has a remarkable ability to interpret his little brothers wants and needs, even in his sleep it would appear.
Of course no sooner was it on and we were safely retired to bed than it was ended and he was throwing a tantrum again. Second time around he was shown how to hit the skip-back button which meant no more tantrums but another ninety minutes of
"Three little speckled frogs
Sitting on a speckled log
Eating the most delicious lunch
yumm yummy"
This is only funny in the retelling, trust me on this!
Katie had read several posts on Twitter I wrote about 'Little M' and duly thought 'he' was a 'she' based on it sounding like Little My from The Moomins, an obscure Finnish cartoon.
This is funny for many reasons (well it was to us anyway) but it does bring a new character into the blog: older brother of The Tokoroth, Little M.
If he even has ASD, Tokoroth does not have it bad. Of the Triad of Impairments that define autism it's the communication that is really an issue. So when he recently woke crying at 5am it was obvious something was wrong but he was unable to articulate what the problem was. He was inconsolable and shouting something about 'fogs'.
Just as frustration (on both sides) was reaching fever pitch, Little M rolled over in his sleep and mumbled (quite theatrically):
"He just wants the Speckled Frog song!"
Little M has a remarkable ability to interpret his little brothers wants and needs, even in his sleep it would appear.
Of course no sooner was it on and we were safely retired to bed than it was ended and he was throwing a tantrum again. Second time around he was shown how to hit the skip-back button which meant no more tantrums but another ninety minutes of
"Three little speckled frogs
Sitting on a speckled log
Eating the most delicious lunch
yumm yummy"
This is only funny in the retelling, trust me on this!
Sunday 1 November 2009
Sunday
Things aren't great at the moment but sometimes you have to stand on your own two feet and something I have learned is that it can always, ALWAYS, be worse so you make the most of the good stuff.
Here is an example of the good stuff. Sunday afternoon, Sunday papers and The Tokoroth crashed out on the bed with me back at The Box.
The rest of the world does not exist.
Here is an example of the good stuff. Sunday afternoon, Sunday papers and The Tokoroth crashed out on the bed with me back at The Box.
The rest of the world does not exist.
Friday 30 October 2009
Line 'em up
I have had the pleasure of spending a few hours this week with my little Tokoroth, I adore him! I am biased, of course, because he is my flesh and blood. There are days when he reacts positively normally and there are days when he really, really doesn't!
Currently he spends a lot of his waking moments finding containers of liquids either in the bathroom, or the kitchen, and lining them up. It doesn't matter how many times you pick them up and put them back he just keeps getting them back out and lining them up again. And again.
I'm not really much help, I just help him get them really straight and make sure they are organised into types as well as straight lines.
I can't imagine where he gets it from.
Currently he spends a lot of his waking moments finding containers of liquids either in the bathroom, or the kitchen, and lining them up. It doesn't matter how many times you pick them up and put them back he just keeps getting them back out and lining them up again. And again.
I'm not really much help, I just help him get them really straight and make sure they are organised into types as well as straight lines.
I can't imagine where he gets it from.
Wednesday 28 October 2009
Reaction
When it was first proposed that the Tokoroth might have an autistic spectrum disorer I was asked whether I felt disappointed.
"Yes," I said, "I was hoping for Tourettes." :D
"Yes," I said, "I was hoping for Tourettes." :D
Tuesday 27 October 2009
The Genetic Link
This post should be subtitled: "He caught it from me?"
I was reviewing the video (DVD) that accompanies the OU course when I was struck by the story of a young boy who is identified as being on the spectrum. At the same time the doctors observed that his grandfather was a bit 'odd' and he (the grandfather) was subsequently diagnosed with Aspergers at age 55.
As I listened to the grandfather speak about his childhood, his social seclusion and the film highlighted the frequent genetic (hereditary) link with autism I was already on the phone to my Mum.
"Mum, you remember how the doctors couldn't explain my rocking when I was a child and how you could take me anywhere when I was a toddler because I just played under a table quietly with a single toy for hours? And you remember how I grew up a bit of a loner who couldn't leave the house without following a very specific pattern? And you remember how I'd pretty much read every Enid Blyton book from every library in our town by the age of 10?"
Yes, it would appear that I may also be undergoing some tests alongside The Tokoroth. I'm pretty sure I'm normal but not everyone else agrees! :D
I was reviewing the video (DVD) that accompanies the OU course when I was struck by the story of a young boy who is identified as being on the spectrum. At the same time the doctors observed that his grandfather was a bit 'odd' and he (the grandfather) was subsequently diagnosed with Aspergers at age 55.
As I listened to the grandfather speak about his childhood, his social seclusion and the film highlighted the frequent genetic (hereditary) link with autism I was already on the phone to my Mum.
"Mum, you remember how the doctors couldn't explain my rocking when I was a child and how you could take me anywhere when I was a toddler because I just played under a table quietly with a single toy for hours? And you remember how I grew up a bit of a loner who couldn't leave the house without following a very specific pattern? And you remember how I'd pretty much read every Enid Blyton book from every library in our town by the age of 10?"
Yes, it would appear that I may also be undergoing some tests alongside The Tokoroth. I'm pretty sure I'm normal but not everyone else agrees! :D
Monday 26 October 2009
Audiology & Speech Therapy
On Monday The Tokoroth had an appointment with the Audiology and speech therapy unit. I wasn't at this so I am waiting for his Mum to join in here or send me a report.
Sunday 25 October 2009
SK124
Quite by chance I recently embarked upon an Open University (OU) science degree. The second module, which I am just starting is SK124: Understanding Autism Spectrum Disorders.
I will use this website as place where I write about what I learn as an aid to study but also as a way to understand him and the process of diagnosis.
I will use this website as place where I write about what I learn as an aid to study but also as a way to understand him and the process of diagnosis.
Diagnosing...
Like a lot of parents we first noticed that the Tokoroth was a bit different a little after he was two. The usual things that concern parents: lack of eye contact, strange vocabulary and just generally not developing at the standard pace.
We're pretty chilled about these things and thought he might be a slow developer or just the last of the bunch (he's the youngest of three). Tokoroth's mum certainly thought so I but I wasn't so sure.
At first I thought he was autistic but he didn't really tick any of the boxes and it wasn't until much later that I encountered the term 'Autism Spectrum Disorders (ASD)'.
That was, for me, when the penny dropped and the journey began.
We're pretty chilled about these things and thought he might be a slow developer or just the last of the bunch (he's the youngest of three). Tokoroth's mum certainly thought so I but I wasn't so sure.
At first I thought he was autistic but he didn't really tick any of the boxes and it wasn't until much later that I encountered the term 'Autism Spectrum Disorders (ASD)'.
That was, for me, when the penny dropped and the journey began.
Thursday 22 October 2009
The CDC
After the standard '3 year old' assessment where it was quite obvious the clinician wanted to refer The Tokoroth an apponitment for a Child Development Clinic (CDC) was duly booked. We were told that this was a long day and many questions would be asked about various aspects of the pregnancy and birth as well as his early years. The Tokoroth was not required to be present at this 'CDC'.
In the event it was, at best, an hour or so of going through a questionnaire which is a series of forms of fact finding which gets discussed at a monthly 'Intake' meeting where kids with the most need are identified and suitable next steps planned.
So far as I can gather from this stage on we have: audiology/speech therapy, a classroom assessment (which was actually booked separately by his Montessori nursery but gets factored in) and finally the session with the pediatrician with, eventually, a diagnosis one way or another.
In the event it was, at best, an hour or so of going through a questionnaire which is a series of forms of fact finding which gets discussed at a monthly 'Intake' meeting where kids with the most need are identified and suitable next steps planned.
So far as I can gather from this stage on we have: audiology/speech therapy, a classroom assessment (which was actually booked separately by his Montessori nursery but gets factored in) and finally the session with the pediatrician with, eventually, a diagnosis one way or another.
Sunday 18 October 2009
What is a Tokoroth?
We jokingly refer to our youngest son as "The Tokoroth", a term found in Michelle Paver's wonderful series of books, The Chronicles of Ancient Darkness.
A Tokoroth is child which has been kept cold, without light or love until it's soul breaks, by the Soul Eaters, until the body becomes host to a demon when it reaches a certain age.
A little harsh at face value but he can be a devil at times! :)
A Tokoroth is child which has been kept cold, without light or love until it's soul breaks, by the Soul Eaters, until the body becomes host to a demon when it reaches a certain age.
A little harsh at face value but he can be a devil at times! :)
Subscribe to:
Posts (Atom)
