We have been thinking quite a lot about our OT's suggestion that E see a Speech Therapist. I have also been doing a bit of reading about pragmatics. Now, I have done 3 semesters worth of linguistics courses at an undergraduate level, yet I still don't really know how to explain pragmatics, so forgive me if this makes no sense.
Pragmatics is the way we use language to communicate with others, and socialise. it is the way we convey meaning. A person can have a lexicon (head dictionary!) filled with tens of thousands of words, but still have a problem with pragmatics. So, is there a deficit in E's pragmatic language? It is hard to say. He is only four, so I am not sure if it's a characteristic of his PDD-NOS, or his language just hasn't developed to that point yet. One thing that sticks out with E is that he speaks as if nobody else is speaking, and nothing else is going on around him. For instance, he can be talking to me about spiders (a current fascination), so will be asking "why is a trap door spider called a trap door spider?" and meanwhile, his sister, M, is whinging for a drink and trying to clean in to the kitchen sink, so i am busy trying to sort her out. He keeps talking, keeps asking the same question, completely oblivious to what is going on, and ignores me when I say "in a minute", or "hang on a second, I'm just sorting M out." I do wonder, though, if that is his egocentrism. Jean Piaget asserted that between the ages of 2 and 7, children are in a stage of "egocentrism," i.e. they think the world revolves around them. Often literally! E will often ask "why is the sun following me?" So, I am not sure where to draw the line here. I'm not sure if it's a problem with pragmatics, or just plain old ego at work. I can not get out of not answering the question, though. I will get M's drink, move her away from the sink, settle her at the kitchen table with her drink and a snack, and he will still be asking the same question. I don't know what that means, if anything. I'm just trying to relate this linguistic thing to him. It is to do with turn taking as well, and he is not great at that, but again, he is 4.. And talking about things that only interest him? Again, 4. I just don't know!
In other news, I have applied for funding through the Helping Children With Autism Program to help us pay for therapies and some equipment. I faxed the application on the weekend, and got an email on Tuesday to say they had received the application, and we should hear something within 6 weeks. They also attached a document called Self Care for Families. There's a list of things that help us cope bette, e.g. having high self esteem, a sense of humour etc. There was one point that really made me think
a strong faith (or a constructive philosophy that gives life meaning)
I do not have a strong faith. I am an atheist through and through. But do I feel like life has meaning? I don't know. And I don't mean that in a nihilistic, depressed sort of way. I just think, we are biological creatures, living, breeding and dying, to fertilise the earth to grow the plants etc. So, do I have a constructive philosophy that gives life meaning? Um.. not really. Nothing that I can put in to words. I think it would be helpful to have something that I could focus on when I am not coping well, or we are having a particularly bad day. But I got nothing at the moment. I will keep thinking about it.
Tuesday, October 30, 2012
Tuesday, October 23, 2012
Pre-school Visits, Denim Shorts and Bed Time.
Today, we had a visit at E's future pre-school. It is a good opportunity for him to become familiar with the teachers, environment, and routine of going there, parking, walking in etc, we had M with us for the first time and E seemed more relaxed having his little sister there with him. M is almost 2.
We spent some time in the playground mainly watching the other children. We were approached by a few staff members in a friendly way, and he coped quite well. We spent some time in a busy classroom - his future classroom, in fact - and that was a little overwhelming. An empty classroom was next and this was much better for both of the kids. They looked at some bugs encased in resin with much fascination, and that prompted the director to loan us a book and a few puzzles that teamed with the theme. E was a little distressed thinking about how the bugs ended up in the resin, and even moreso when an overly enthusiastic learning support teacher showed him a glass covered pin board stuck full of butterflies. Eek!
But all in all, it was a successful visit and we lived to tell the tale!
So, as a reward for their bravery and participation, I promised the kids we could go to the shops. E wanted a "shirt with buttons" and M wanted "shirt. Blue." We ended up with neither, and instead spent an exorbitant amount of money on stretchy pants and Skylander t-shirts. However, we also had something of a break through with E, who was lusting after a pair of denim shorts in the boy's section. They were full price, and completely different to what he would usually wear, so I was reluctant to get them. I did, in the end, and he has worn them almost all day. Baby steps!
I feel like I have finally accepted that E needs me, and only me, for the bed time routine. When M is upset and wants her Mummy, we try and get E's dad to take him to bed, but it always ends in tears, tantrums, meltdowns, whathaveyou. The fact of the matter is that he simply can not cope with anyone else supervising the teeth brushing, taking him to the loo, and then cuddling up with him in bed. I hate that if we explain that I just can NOT do it (for whatever reason) that that is not acceptable. There is Elly Belly and his world, and all he hears is "I am not going to do what you need me to do." There is no reasoning, no coaxing, no ability to think beyond his own needs at that time. And it sucks. But it is what it is.
We spent some time in the playground mainly watching the other children. We were approached by a few staff members in a friendly way, and he coped quite well. We spent some time in a busy classroom - his future classroom, in fact - and that was a little overwhelming. An empty classroom was next and this was much better for both of the kids. They looked at some bugs encased in resin with much fascination, and that prompted the director to loan us a book and a few puzzles that teamed with the theme. E was a little distressed thinking about how the bugs ended up in the resin, and even moreso when an overly enthusiastic learning support teacher showed him a glass covered pin board stuck full of butterflies. Eek!
But all in all, it was a successful visit and we lived to tell the tale!
So, as a reward for their bravery and participation, I promised the kids we could go to the shops. E wanted a "shirt with buttons" and M wanted "shirt. Blue." We ended up with neither, and instead spent an exorbitant amount of money on stretchy pants and Skylander t-shirts. However, we also had something of a break through with E, who was lusting after a pair of denim shorts in the boy's section. They were full price, and completely different to what he would usually wear, so I was reluctant to get them. I did, in the end, and he has worn them almost all day. Baby steps!
I feel like I have finally accepted that E needs me, and only me, for the bed time routine. When M is upset and wants her Mummy, we try and get E's dad to take him to bed, but it always ends in tears, tantrums, meltdowns, whathaveyou. The fact of the matter is that he simply can not cope with anyone else supervising the teeth brushing, taking him to the loo, and then cuddling up with him in bed. I hate that if we explain that I just can NOT do it (for whatever reason) that that is not acceptable. There is Elly Belly and his world, and all he hears is "I am not going to do what you need me to do." There is no reasoning, no coaxing, no ability to think beyond his own needs at that time. And it sucks. But it is what it is.
Monday, October 22, 2012
Obligatory Introductory Post
Hello. I am Elly Belly's Mum, among other things. I am also a wife, M's Mum, a 27 year old, a Pisces. I'm sure anything else relevant will come up.
Why a blog? What is this place?
I'm not really sure yet. I have always been a writer, a journal scrawler, angsty poet and so on, so it's only natural that I would come back and begin yet another blog.
Elly Belly is my (our) 4 year old. He has just been diagnosed with Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS for short), an Autism Spectrum Disorder that basically means he does not meet the criteria specified for Autism or Asperger's Disorder, but had enough of the characteristics to warrant an Autism diagnosis.
This did not really come as a surprise to us. We know he is not a typical four year old, but I guess I am still not 100% convinced he is autistic. But maybe I am in denial. Who bloody knows.
What I do know is that I am angry. I am jealous of my friends and family who have typical children. I am completely overwhelmed. I am upset. I want to talk about it all the time, but don't know who to talk to. Then other times, I don't want to talk to anyone. About anything.
So, what is E like?
He is smart. He likes to talk and he talks a lot. He likes talking about numbers, especially. He doesn't group them or write them or any of those typical autism things. He mostly just asks how old people are, if one number is bigger than another, how many hands make X number, how much is x plus x. He speaks like an adult at times. People seem to expect so much if him because of this. He says things like "those dandelions look divine" and "boys are often taller than girls."
He is kooky. He collects random things and always has. He walked early, at 8 months old, and would walk round grasping an object in each hand; toothbrushes, balloons on strings, chunky textas, sticks. These days, he hoards junk in plastic bags or kid's suitcases, or makes piles of things that nobody is allowed to touch ever ever! At the moment, it is a bottle of hair gel, a can of hair mousse, temporary tattoos and a packet of licorice.
He has a sensory modulation disorder. Aka sensory processing disorder, sensory "issues", sensory defensiveness, whatever you want to call it. We are often asked this question - "And how does that manifest itself?"
Usually, I explain that he can only wear certain types of clothing. His 'uniform' is a pair of girl's leggings and an oversized t-shirt. Some days, he will wear underwear. Some days, he will wear skinny jeans. He likes clothes that are soft, so I use fabric softener and everything is 100% cotton. He likes 3 day old clothes, especially, often stained beyond recognition, but soft from wear. It is not just a matter of making him wear something. I can't put a pair of track suit pants on him on a cold day and expect he will eventually stop fussing about it. He would scream (and has done) for however long it took to remove them and replace them with his "stretchy pants." We spent the winter he turned 3 inside as there was no jumper, jacket or coat on earth that he would wear.
But his sensory processing disorder (SPD) is so much more than just his clothes. He craves highly flavoured foods. He loves lollies and chocolate, anything sickly sweet. He also loves pickled onions (hence the blog address!), olives, pickled cucumbers, vinegar, cracked black pepper, spicy salsa. Fortunately, he also loves fruit. We have been through phases where he has had to wipe his mouth after every bite of food.
He has poor awareness of where his body is in space, but he is not clumsy. He crashes and jumps and bumps like a jumping bean on crack. We gave up long ago on keeping our sofa in a reasonable condition, and have resolved ourselves to the fact that it might as well be an indoor trampoline.
He plays roughly with other children, but only if he can overcome his overwhelming anxiety about actually going near them.
I guess those are the main things because now I'm not sure what to write. He has super dooper anxiety, mainly regarding strangers, new places, and appointments. He wakes several times a night, goes to sleep with me beside him etc.
Things are always improving, but at the same time, thing get much worse.
We have seen a psychologist, numerous GPs, and have been in occupational therapy (OT) for months now. We have also just started visiting with a preschool to try and get him ready to go next year. It is going very well, much better than expected, so that is great.
My battery is at 1% so I think this is a good time to stop. More to come I expect!
Why a blog? What is this place?
I'm not really sure yet. I have always been a writer, a journal scrawler, angsty poet and so on, so it's only natural that I would come back and begin yet another blog.
Elly Belly is my (our) 4 year old. He has just been diagnosed with Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS for short), an Autism Spectrum Disorder that basically means he does not meet the criteria specified for Autism or Asperger's Disorder, but had enough of the characteristics to warrant an Autism diagnosis.
This did not really come as a surprise to us. We know he is not a typical four year old, but I guess I am still not 100% convinced he is autistic. But maybe I am in denial. Who bloody knows.
What I do know is that I am angry. I am jealous of my friends and family who have typical children. I am completely overwhelmed. I am upset. I want to talk about it all the time, but don't know who to talk to. Then other times, I don't want to talk to anyone. About anything.
So, what is E like?
He is smart. He likes to talk and he talks a lot. He likes talking about numbers, especially. He doesn't group them or write them or any of those typical autism things. He mostly just asks how old people are, if one number is bigger than another, how many hands make X number, how much is x plus x. He speaks like an adult at times. People seem to expect so much if him because of this. He says things like "those dandelions look divine" and "boys are often taller than girls."
He is kooky. He collects random things and always has. He walked early, at 8 months old, and would walk round grasping an object in each hand; toothbrushes, balloons on strings, chunky textas, sticks. These days, he hoards junk in plastic bags or kid's suitcases, or makes piles of things that nobody is allowed to touch ever ever! At the moment, it is a bottle of hair gel, a can of hair mousse, temporary tattoos and a packet of licorice.
He has a sensory modulation disorder. Aka sensory processing disorder, sensory "issues", sensory defensiveness, whatever you want to call it. We are often asked this question - "And how does that manifest itself?"
Usually, I explain that he can only wear certain types of clothing. His 'uniform' is a pair of girl's leggings and an oversized t-shirt. Some days, he will wear underwear. Some days, he will wear skinny jeans. He likes clothes that are soft, so I use fabric softener and everything is 100% cotton. He likes 3 day old clothes, especially, often stained beyond recognition, but soft from wear. It is not just a matter of making him wear something. I can't put a pair of track suit pants on him on a cold day and expect he will eventually stop fussing about it. He would scream (and has done) for however long it took to remove them and replace them with his "stretchy pants." We spent the winter he turned 3 inside as there was no jumper, jacket or coat on earth that he would wear.
But his sensory processing disorder (SPD) is so much more than just his clothes. He craves highly flavoured foods. He loves lollies and chocolate, anything sickly sweet. He also loves pickled onions (hence the blog address!), olives, pickled cucumbers, vinegar, cracked black pepper, spicy salsa. Fortunately, he also loves fruit. We have been through phases where he has had to wipe his mouth after every bite of food.
He has poor awareness of where his body is in space, but he is not clumsy. He crashes and jumps and bumps like a jumping bean on crack. We gave up long ago on keeping our sofa in a reasonable condition, and have resolved ourselves to the fact that it might as well be an indoor trampoline.
He plays roughly with other children, but only if he can overcome his overwhelming anxiety about actually going near them.
I guess those are the main things because now I'm not sure what to write. He has super dooper anxiety, mainly regarding strangers, new places, and appointments. He wakes several times a night, goes to sleep with me beside him etc.
Things are always improving, but at the same time, thing get much worse.
We have seen a psychologist, numerous GPs, and have been in occupational therapy (OT) for months now. We have also just started visiting with a preschool to try and get him ready to go next year. It is going very well, much better than expected, so that is great.
My battery is at 1% so I think this is a good time to stop. More to come I expect!
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