I have had some results back from the blood tests taken nearly 9 weeks ago.
J is clear of diabetes, thyroid disease and high cholesterol.
The first part of his genetic testing has come back clear.
It was explained to me that this test looked for any missing chromosomes and found he has them all present.
I asked if this meant he was clear of SMS and was told that in fact as happens a lot with SMS it is not a missing chromosome (number 17) but a mutation of it and so that is what they are still testing for now.
So it looks pretty positive I feel that he does'nt have SMS which is a relief as it means it is not genetic and therefore the other children won't have that hanging over them when the time comes for them to start their own families.
I asked how much longer I would have to wait and was told no more than a few weeks.
I only found this all out by calling the genetics team. I used the pretence of asking a question and then wound it round to asking if any results were back in. A little lie maybe but at least I got some answers!
Thursday, 29 September 2011
Friday, 23 September 2011
Cheap entertainment at the cost of a vulnerable adult
How can we as a society ever move with the times and become accepting and understanding of children and adults with autism, mental health problems and other neurological disorders, if a national television show hightlights and pokes fun at an obviously vunerable woman?
The show in question is the X Factor (UK).
A woman appeared on last Saturday nights audtion show and has auditioned previously in 2005, 2006, and 2008.
She does not have a good singing voice. It is in fact very awful.
The show dedicated nearly 8 minutes to her. It showed her giving a bunch of flowers to Louis, one of the judges.
She was mocked by Gary Barlow for her prounounciation of 'Les Miserables', laughed at by all four judges and used by producers to gain cheap laughs.
It has now come to light that there have been scenes edited from the show which have Gary Barlow going up onto the stage after her audition and rifling through her handbag. He pulls out her passport and mocks that she won't be needing that. The audience booed that - probably why it was edited out.
It is reported that she was approached by the production team to come back and audition.
Why would they do that? We all know she can not sing or hold a note.
Cheap laughs.
Laughing and mocking a woman that clearly has mental health issues.
Of course Simon Cowell's lawyers and press team will move to bury this story as much as possible and there will probably be some 'shock' for the X Factor in the coming weeks that Fleet Street take up and run with whilst forgetting the appaling treatment of a vulnerable human being.
The production team claim the lady in question was happy to go ahead with the audition.
Coercing her I expect.
They did pay for her expenses to travel there and put her up in a nice hotel after approaching her.
They don't do that for all the other auditionees.
Mental health is not to be mocked at. Not to be sneered at. And not to be used for cheap entertainment.
The show in question is the X Factor (UK).
A woman appeared on last Saturday nights audtion show and has auditioned previously in 2005, 2006, and 2008.
She does not have a good singing voice. It is in fact very awful.
The show dedicated nearly 8 minutes to her. It showed her giving a bunch of flowers to Louis, one of the judges.
She was mocked by Gary Barlow for her prounounciation of 'Les Miserables', laughed at by all four judges and used by producers to gain cheap laughs.
It has now come to light that there have been scenes edited from the show which have Gary Barlow going up onto the stage after her audition and rifling through her handbag. He pulls out her passport and mocks that she won't be needing that. The audience booed that - probably why it was edited out.
It is reported that she was approached by the production team to come back and audition.
Why would they do that? We all know she can not sing or hold a note.
Cheap laughs.
Laughing and mocking a woman that clearly has mental health issues.
Of course Simon Cowell's lawyers and press team will move to bury this story as much as possible and there will probably be some 'shock' for the X Factor in the coming weeks that Fleet Street take up and run with whilst forgetting the appaling treatment of a vulnerable human being.
The production team claim the lady in question was happy to go ahead with the audition.
Coercing her I expect.
They did pay for her expenses to travel there and put her up in a nice hotel after approaching her.
They don't do that for all the other auditionees.
Mental health is not to be mocked at. Not to be sneered at. And not to be used for cheap entertainment.
Tuesday, 20 September 2011
Diet cola ban
Still no news on the results for J's genetic tests.
The wait is driving me mad!
The melatonin is still working its miracle even though I am not using it every night on him. He does seem a lot calmer at night with a lot less pacing, muttering, screaming and head banging.
I have also cut out his diet cola.
This is a big thing for him.
Many previous blogs state his "cola cola cola" pleas and I have taken a stand and said no more. If he is to have some it will always be the caffeine and sugar free variety and that is only on special occasions.
Don't get me wrong, he was not drinking bottles of the stuff daily but he did like it and did get it more than an average child. Bad habit I know and one that has stopped.
There is much "cola cola cola" requesting going on but I have not given in.
The wait is driving me mad!
The melatonin is still working its miracle even though I am not using it every night on him. He does seem a lot calmer at night with a lot less pacing, muttering, screaming and head banging.
I have also cut out his diet cola.
This is a big thing for him.
Many previous blogs state his "cola cola cola" pleas and I have taken a stand and said no more. If he is to have some it will always be the caffeine and sugar free variety and that is only on special occasions.
Don't get me wrong, he was not drinking bottles of the stuff daily but he did like it and did get it more than an average child. Bad habit I know and one that has stopped.
There is much "cola cola cola" requesting going on but I have not given in.
Friday, 9 September 2011
What a waste of time!
Oh my. It seems most of our experiences and meetings with professional agencies seem to be full of time wasting, mis-information or not suitable.
If you go back over this blog, or are a regular reader and remember various encounters I have blogged about you will see what I am talking about.
Yesterday we finally had the occupational therapist visit. I blogged about this back in late July, about the problems I had when trying to rearrange the appointment sent to us.
Well finally after three years the OT comes and visits us! Two,nearly three years of 'being at the top of the list'.
The paediatrician and our specialist disability team worker had both independantly written to the OT with their recommendations for us.
I presume these letters and their content were properly read.
Why then however did the OT arrive, and as soon as she sat down did she tell me that she is confused as to why she has come out to see me, as she cannot offer me the help being requested.
Pardon?!
J has to have a physical disability, not a mental disability to start to qualify for the recommendations!
So a wasted appointment for both of us.
OT cannot offer any proper help for us as a family as in her words "you pretty much know what's what and understand the issues of safety".
So I have waited two to three years for that little gem of information.
Considering there is so much need for the OT in the community it surprised me that I was not telephoned about the content of the request, to clarify it with myself, and then saved wasting this appointment which could have been given to someone else who I am sure has also been 'at the top of the list' for several years.
Also consider that the OT only works six hours per week so appointments are few and far between.
The woman then gave me information of a charity that helps with this kind of adaptaion but upon me googling them and reading their criteria, they too only help those with physical disabilities.
Cue much huffing and puffing from me and another moaning blog!
If you go back over this blog, or are a regular reader and remember various encounters I have blogged about you will see what I am talking about.
Yesterday we finally had the occupational therapist visit. I blogged about this back in late July, about the problems I had when trying to rearrange the appointment sent to us.
Well finally after three years the OT comes and visits us! Two,nearly three years of 'being at the top of the list'.
The paediatrician and our specialist disability team worker had both independantly written to the OT with their recommendations for us.
I presume these letters and their content were properly read.
Why then however did the OT arrive, and as soon as she sat down did she tell me that she is confused as to why she has come out to see me, as she cannot offer me the help being requested.
Pardon?!
J has to have a physical disability, not a mental disability to start to qualify for the recommendations!
So a wasted appointment for both of us.
OT cannot offer any proper help for us as a family as in her words "you pretty much know what's what and understand the issues of safety".
So I have waited two to three years for that little gem of information.
Considering there is so much need for the OT in the community it surprised me that I was not telephoned about the content of the request, to clarify it with myself, and then saved wasting this appointment which could have been given to someone else who I am sure has also been 'at the top of the list' for several years.
Also consider that the OT only works six hours per week so appointments are few and far between.
The woman then gave me information of a charity that helps with this kind of adaptaion but upon me googling them and reading their criteria, they too only help those with physical disabilities.
Cue much huffing and puffing from me and another moaning blog!
Thursday, 8 September 2011
Pants(less) Man
Oh the joys of these little quirks that appear for no reason and seem to take an age to abate.
Last term, towards the end, J decided to stop wearing pants.
He would remove them at the weekend and upon arriving back from school.
At sports day his teacher had a quiet word with me. On getting changed into his shorts and tee shirt they realised he had no pants on. She told me he had come to school minus pants.
But I knew he had worn them to school as I still dress him and he had no time to take them off before the school transport arrived as he was with me.
So they checked the next day, as I noted he had come home pantless the day before too.
They found them in a cupboard!
He has spent all the summer holiday removing them every day.
I tried boxer shorts.
He removed them.
He just likes being au naturel it would seem.
Back to school this term and again he has come home for two days minus pants and today holding onto them as I collected him off of the school transport!
So the new teacher has been given a note from me explaining all about Pants (less) Man and his trick of removing them in the toilet and hiding them in a cupboard. Hopefully he will come back with the missing pairs tomorrow!
Last term, towards the end, J decided to stop wearing pants.
He would remove them at the weekend and upon arriving back from school.
At sports day his teacher had a quiet word with me. On getting changed into his shorts and tee shirt they realised he had no pants on. She told me he had come to school minus pants.
But I knew he had worn them to school as I still dress him and he had no time to take them off before the school transport arrived as he was with me.
So they checked the next day, as I noted he had come home pantless the day before too.
They found them in a cupboard!
He has spent all the summer holiday removing them every day.
I tried boxer shorts.
He removed them.
He just likes being au naturel it would seem.
Back to school this term and again he has come home for two days minus pants and today holding onto them as I collected him off of the school transport!
So the new teacher has been given a note from me explaining all about Pants (less) Man and his trick of removing them in the toilet and hiding them in a cupboard. Hopefully he will come back with the missing pairs tomorrow!
Saturday, 3 September 2011
The twiddler embarrassment.
Okay embarrassing story time....
The other day I took J to Boots the chemist. We parked in a retail park and only had a short walk to the shop door.
However on that very short walk J managed to do something very embarrassing that got a shocked look from a very yummy mummy and her very expensively dressed daughters.
J has been a nipple twiddler for a few years now.
He favours his left nipple and has made it almost deformed and is permanently enlarged. The GP and the paediatricians are not concerned by it, but it does look odd, and I am always telling him to "let go". He seems to do it with a smirk on his face too, which I do admit makes me cringe.
As far as I am aware he has only confined this behaviour to the home.
But then he goes and does what I will explain next, and it was the single most embarrassing event since he pulled his trousers and pants down to look at his willy and pick his bottom in Burger King right next to a couple eating their meal.
I was pushing the pushchair with W in and J was walking alongside me, behaving and walking very well, or so I thought....
I become aware of this yummy mummy, all tight designer jeans and bedecked in a fine array of jewellery, staring at us.
I look to my right and there is J, tee shirt pulled right up under his chin, nipple twiddling away and smirking.
I half yell half hiss at him to pull his top down, which he does.
But the image of this giant sized 9 year old, playing with his nipple, smirking, will forever be burned into that woman and perhaps her darling daughters minds forever.
So, if the lady in question ever gets to read this (which is highly unlikely but anyhoo), then I apologise to you and your girls, but these things happen, and I too am hoping it never happens again.
The other day I took J to Boots the chemist. We parked in a retail park and only had a short walk to the shop door.
However on that very short walk J managed to do something very embarrassing that got a shocked look from a very yummy mummy and her very expensively dressed daughters.
J has been a nipple twiddler for a few years now.
He favours his left nipple and has made it almost deformed and is permanently enlarged. The GP and the paediatricians are not concerned by it, but it does look odd, and I am always telling him to "let go". He seems to do it with a smirk on his face too, which I do admit makes me cringe.
As far as I am aware he has only confined this behaviour to the home.
But then he goes and does what I will explain next, and it was the single most embarrassing event since he pulled his trousers and pants down to look at his willy and pick his bottom in Burger King right next to a couple eating their meal.
I was pushing the pushchair with W in and J was walking alongside me, behaving and walking very well, or so I thought....
I become aware of this yummy mummy, all tight designer jeans and bedecked in a fine array of jewellery, staring at us.
I look to my right and there is J, tee shirt pulled right up under his chin, nipple twiddling away and smirking.
I half yell half hiss at him to pull his top down, which he does.
But the image of this giant sized 9 year old, playing with his nipple, smirking, will forever be burned into that woman and perhaps her darling daughters minds forever.
So, if the lady in question ever gets to read this (which is highly unlikely but anyhoo), then I apologise to you and your girls, but these things happen, and I too am hoping it never happens again.
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