'I love you'.
I wish he would say it to me.
,
Sunday, 28 March 2010
New medicine
Well again I am going to try J with some medicine. Specifically the recommended magnesium and Vitamins B6 and B12.
Now as you can imagine getting J to take a tablet would be a miracle as his eating habits are so poor and he has a fear of anything new food or drink wise.
A few years ago I attempted to medicate him with these vitamins but as they were tablet form I had to crush them to a fine powder and hide it within a syrup in an oral syringe. Even with this he knew there was something in there and would attempt to vomit it up, if indeed he had actually swallowed it and not spat it out or kept it in his mouth for an extraordinary amount of time.
I went health food shopping yesterday and miracles upon miracles they now make these in a liquid form. He has had the three recommended doses today, which for the first dose amounted to me blocking him in the kitchen until he swallowed it. He was going for the world record of 5 ml of liquid vitamins in mouth without swallowing and managing to say " swallow,swallow" after my prompting to do so.
He did swallow it eventually - hence me being able to come here and type this out. We would still be in the kitchen now if not.
I estimate it will take around 6 weeks of daily doses before we see a difference, indeed if we see any difference at all. I say 6 weeks as it takes the body that long to build up a store of the vitamins you are taking, and if the body is lacking it can take longer. Once the body has enough of each vitamin it can then use it effectively and for the purpose I am hoping it will improve.
Studies show that autistic people lack magnesium quite enormously and as this mineral is reported to help with mental health and well being ( as well as PMT ladies) I am especially looking for an improvement in this area.
I am also using the well known omega formula as well.
So as the saying goes - only time will tell. But I hope upon hope that these combined additions to his diet really do make a substantial difference to his life, health and well being.
Now as you can imagine getting J to take a tablet would be a miracle as his eating habits are so poor and he has a fear of anything new food or drink wise.
A few years ago I attempted to medicate him with these vitamins but as they were tablet form I had to crush them to a fine powder and hide it within a syrup in an oral syringe. Even with this he knew there was something in there and would attempt to vomit it up, if indeed he had actually swallowed it and not spat it out or kept it in his mouth for an extraordinary amount of time.
I went health food shopping yesterday and miracles upon miracles they now make these in a liquid form. He has had the three recommended doses today, which for the first dose amounted to me blocking him in the kitchen until he swallowed it. He was going for the world record of 5 ml of liquid vitamins in mouth without swallowing and managing to say " swallow,swallow" after my prompting to do so.
He did swallow it eventually - hence me being able to come here and type this out. We would still be in the kitchen now if not.
I estimate it will take around 6 weeks of daily doses before we see a difference, indeed if we see any difference at all. I say 6 weeks as it takes the body that long to build up a store of the vitamins you are taking, and if the body is lacking it can take longer. Once the body has enough of each vitamin it can then use it effectively and for the purpose I am hoping it will improve.
Studies show that autistic people lack magnesium quite enormously and as this mineral is reported to help with mental health and well being ( as well as PMT ladies) I am especially looking for an improvement in this area.
I am also using the well known omega formula as well.
So as the saying goes - only time will tell. But I hope upon hope that these combined additions to his diet really do make a substantial difference to his life, health and well being.
Saturday, 27 March 2010
What is Autism in my son
It is easy nowadays to Google Autism and find out the symptoms and the impacts on the individuals life.
However I am going to talk about what my son endures and the effects of Autism on his life.
At the time of writing this blog update J is going through a phase ( we hope) of not sleeping in his bed. He sleeps on the landing. No mattress or pillow. Just his cover. This has been happening for 5 months now. We have tried to get him back in to his bed with a variety of methods and we have looked at what may be causing him to not want to sleep in his bed, but I think it boils down to him preferring the hardness of the floor. Temple Grandin, a great Autistic lady who has written about her Autism, has said she sleeps in a cow press as she needs the sensation of pressure on her body to enable her to sleep.
J has verbal communication to the point of being able to request basic items of food - "toast, milk, cola, water, bissie (biscuit) but he doesn't initiate conversations and cannot hold any type of conversation. He is echolalic ( the start of language learning that occurs in toddlers and involves the child repeating, perhaps not sound perfect ( see 'bissie' for biscuit) words the parent/carer says. He cannot answer questions as he has no interest in you and therefore if you were to direct a question, no matter how basic, such as " is J okay?" he will reply, when pushed several times, with "okay, okay". The reply is not an answer rather his echolalia taking hold. Without the echolalia he would be silent. If you do not direct the question to him he will ignore.
To get J to know you are talking to him you have to state his name first. Without that he blends the sound of your voice in to the background.
J has major food issues and has a small limited selection of food he will eat. Toast, a few types of biscuits/crisps/chocolate, chips, pureed fruit pots ( the ones made for weaning babies with no lumps in)custard which is a certain brand, bread sticks, raisins, Twiglets,Petit Filous yoghurts, milk, water and diet cola. He will not eat normal meals. He gags and chokes if you try to make him eat other foods and now as he is such a strong child I cannot blend down normal meals and make him eat from a spoon I am proffering. Back when he was small it still took an hour or so to get him to eat the pureed meal ( stews and casseroles were the biggest ones as I could add tonnes of veg to the meat) and it entailed me following him round, making sure he didn't spit the food out.
J has no awareness of other peoples feelings. He laughs when he sees myself crying or his middle brother upset. He goes into hysterical laughter at what appears to us as absolutely nothing whatsoever. He thinks that what he's feeling or thinking is what everyone is thinking and feeling.
J has no danger awareness and therefore needs supervision when out and about as he is liable to walk into oncoming vehicles. Within the home he is a danger to himself and I always make sure plugs are switched off to avoid him turning appliances on. The kitchen is locked to avoid injury from him playing with knives or turning a kettle on for example.
However I am going to talk about what my son endures and the effects of Autism on his life.
At the time of writing this blog update J is going through a phase ( we hope) of not sleeping in his bed. He sleeps on the landing. No mattress or pillow. Just his cover. This has been happening for 5 months now. We have tried to get him back in to his bed with a variety of methods and we have looked at what may be causing him to not want to sleep in his bed, but I think it boils down to him preferring the hardness of the floor. Temple Grandin, a great Autistic lady who has written about her Autism, has said she sleeps in a cow press as she needs the sensation of pressure on her body to enable her to sleep.
J has verbal communication to the point of being able to request basic items of food - "toast, milk, cola, water, bissie (biscuit) but he doesn't initiate conversations and cannot hold any type of conversation. He is echolalic ( the start of language learning that occurs in toddlers and involves the child repeating, perhaps not sound perfect ( see 'bissie' for biscuit) words the parent/carer says. He cannot answer questions as he has no interest in you and therefore if you were to direct a question, no matter how basic, such as " is J okay?" he will reply, when pushed several times, with "okay, okay". The reply is not an answer rather his echolalia taking hold. Without the echolalia he would be silent. If you do not direct the question to him he will ignore.
To get J to know you are talking to him you have to state his name first. Without that he blends the sound of your voice in to the background.
J has major food issues and has a small limited selection of food he will eat. Toast, a few types of biscuits/crisps/chocolate, chips, pureed fruit pots ( the ones made for weaning babies with no lumps in)custard which is a certain brand, bread sticks, raisins, Twiglets,Petit Filous yoghurts, milk, water and diet cola. He will not eat normal meals. He gags and chokes if you try to make him eat other foods and now as he is such a strong child I cannot blend down normal meals and make him eat from a spoon I am proffering. Back when he was small it still took an hour or so to get him to eat the pureed meal ( stews and casseroles were the biggest ones as I could add tonnes of veg to the meat) and it entailed me following him round, making sure he didn't spit the food out.
J has no awareness of other peoples feelings. He laughs when he sees myself crying or his middle brother upset. He goes into hysterical laughter at what appears to us as absolutely nothing whatsoever. He thinks that what he's feeling or thinking is what everyone is thinking and feeling.
J has no danger awareness and therefore needs supervision when out and about as he is liable to walk into oncoming vehicles. Within the home he is a danger to himself and I always make sure plugs are switched off to avoid him turning appliances on. The kitchen is locked to avoid injury from him playing with knives or turning a kettle on for example.
It all began in 2002
Well that is when my first son arrived in my life. He had a slight traumatic delivery and required tubes down his throat and oxygen, plus quite frantic rubbing from the Doctor to get his breathing going.
He passed the initial paediatric test at birth and seemed to be developing well - physically he gained weight well and was exclusively breastfed until he was weaned at four months ( the recommended age back then) and then breastfed until he was 18 months old.
There were no concerns at his 8 months check up either.
However at around 18 months we noticed he didn't respond to us calling his name or talking to him. Our GP referred us for hearing tests, to which he passed with flying colours.
And there our journey through the medical world started.
We were sent to see a paediatrician who after only a 15 minute consultation declared he was autistic. She handed me a two page leaflet and sent us on our way. I read this leaflet with shock and anguish. It stated the basics of Autism but I needed to find out more. So, ever ready with information ( and prior to us having the Internet and therefore the God that is Google) I dragged my rather large and rather tatty (through intensive readings) medical journal reference book out. And there in one paragraph it summed up autism as ' a life long, socially debilitating disability, where the sufferer would not marry, never hold a job and would be dependent on supervision and care for life. Now please try to imagine the devastation of this small passage. I had never heard of autism and this description of it made me think the world had ended.
Further reading ( with me buying several books on the subject) showed this was not always the case and that autism differs from person to person and some people do indeed marry and work,although they do say they have to try hard to 'fit in' as the socially impairing part of this disability is ever present in every autistic person, no matter how mild or severe they are.
We moved soon after seeing that paed and in our new area our new GP said we were being referred to an assessment centre where J would be observed by professionals once a week for one hour, over the course of a year.
The new paed we had said that no formal diagnosis could be made after only a 15 minute meeting and that the previous paed had been wrong in being so hasty.
This then gave me hope. False hope as it transpired, but at that very moment I thought my child was just a little slower in reaching milestones and was not going to be impaired for his entire life with the debilitation that is autism.
Over the year it became obvious that J was having problems with basic communication, socialising, understanding emotions and moving forward in learning.
Toward the end of the year with the assessment centre we were introduced to a special needs school which was centred around autism. Both my husband and I went to view it and fell in love with it. They were warm,loving and full of inspiration in the teaching of children with autism.
J started part time and after a week of unrest and unease on his part he settled in well.
We moved in 2008 and he started at another special needs school. This present school is fantastic, but is still no match for the first, and I mourn the day we left there as it truly was an amazing school with extraordinary teachers and support staff.Even now J looks at old photos of him at that school and he can name all the children there and looks so happy as he recalls his memories of that time and place.
His new school,which as of the time of writing this, he has been attending for two years, is a very modern and techie school. He has a wonderful teaching assistant,J, who he has taken to. He does have a thing about blonde women though!
His old school was smaller,in building size and child numbers. It was a closer atmosphere and as it was where he became a child in my eyes and not my baby anymore, it will always hold special memories for me.
He passed the initial paediatric test at birth and seemed to be developing well - physically he gained weight well and was exclusively breastfed until he was weaned at four months ( the recommended age back then) and then breastfed until he was 18 months old.
There were no concerns at his 8 months check up either.
However at around 18 months we noticed he didn't respond to us calling his name or talking to him. Our GP referred us for hearing tests, to which he passed with flying colours.
And there our journey through the medical world started.
We were sent to see a paediatrician who after only a 15 minute consultation declared he was autistic. She handed me a two page leaflet and sent us on our way. I read this leaflet with shock and anguish. It stated the basics of Autism but I needed to find out more. So, ever ready with information ( and prior to us having the Internet and therefore the God that is Google) I dragged my rather large and rather tatty (through intensive readings) medical journal reference book out. And there in one paragraph it summed up autism as ' a life long, socially debilitating disability, where the sufferer would not marry, never hold a job and would be dependent on supervision and care for life. Now please try to imagine the devastation of this small passage. I had never heard of autism and this description of it made me think the world had ended.
Further reading ( with me buying several books on the subject) showed this was not always the case and that autism differs from person to person and some people do indeed marry and work,although they do say they have to try hard to 'fit in' as the socially impairing part of this disability is ever present in every autistic person, no matter how mild or severe they are.
We moved soon after seeing that paed and in our new area our new GP said we were being referred to an assessment centre where J would be observed by professionals once a week for one hour, over the course of a year.
The new paed we had said that no formal diagnosis could be made after only a 15 minute meeting and that the previous paed had been wrong in being so hasty.
This then gave me hope. False hope as it transpired, but at that very moment I thought my child was just a little slower in reaching milestones and was not going to be impaired for his entire life with the debilitation that is autism.
Over the year it became obvious that J was having problems with basic communication, socialising, understanding emotions and moving forward in learning.
Toward the end of the year with the assessment centre we were introduced to a special needs school which was centred around autism. Both my husband and I went to view it and fell in love with it. They were warm,loving and full of inspiration in the teaching of children with autism.
J started part time and after a week of unrest and unease on his part he settled in well.
We moved in 2008 and he started at another special needs school. This present school is fantastic, but is still no match for the first, and I mourn the day we left there as it truly was an amazing school with extraordinary teachers and support staff.Even now J looks at old photos of him at that school and he can name all the children there and looks so happy as he recalls his memories of that time and place.
His new school,which as of the time of writing this, he has been attending for two years, is a very modern and techie school. He has a wonderful teaching assistant,J, who he has taken to. He does have a thing about blonde women though!
His old school was smaller,in building size and child numbers. It was a closer atmosphere and as it was where he became a child in my eyes and not my baby anymore, it will always hold special memories for me.
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