Okay, so picture the scene....
I am sitting on the sofa, all comfy, watching a programme, not on record, and not on SkyPlus where it can be paused or re-wound.
My middle son and baby are fast asleep.
J is still awake, but doodling about between his bedroom and the landing.
The programme I am watching is getting really interesting.
The main character is involved in the pivotal scene which defines the whole show and is delivering a speech with huge intensity and detail and requires the viewer to listen intently, not sipping the hot tea sitting alongside the ready to eat Hobnobs on the small plate next to them, as quiteness is needed to absorb this monologue.
The sentence I am listening to is almost at an end when out of nowhere comes "AHEEHEEHEEMANAMANAHEE" and I miss what was said on the telly.
J.
He has this knack of interupting during a crucial moment in telly programmes. How quite he knows when to do it is a mystery, but suffice to say he always does it at the point where you need to know what was said.
That is why I have the subtitles setting on permanently. That way I have already read what the character is about to say. And I don't miss out.
That said, if it's a live programme the subtitles can be very annoying - way behind the speech and laughably wrong in parts.
It makes a good argument to get the pause and rewind function on my Sky box though.
Monday, 31 May 2010
Wednesday, 26 May 2010
Birthdays
J has no awareness of birthdays. Either his own or anyone elses.
His first birthday was a family celebration and a time when I had no clue he had special needs.
His second birthday was shared with his second cousin who was 13 days younger than him.
Even though we thought he had a hearing problem, I realised his difficulties ran a lot deeper as I could see the enormous differences between him and his second cousin,E. The differences were apparent when I was holding E and talking to her and even though her speech was still evolving, her understanding was profound. She responded to facial expressions and sought out contact with others. J was silent and uninterested in everyone.
We had this joint party at a family members house, and one person, who shall remain unnamed, passed comment -
It went along the lines of " oh girls are so much better than boys", "he's backwards" (meant in the derogatory sense, not as he was doing something back to front) and " he's so much trouble" ( as he wanted to climb the stairs for the hundredth time.
He was two. It was his birthday. He was well behaved and had never had a temper tantrum. Hurt? Yep. Still hurt? Oh yes as no apology was given.
Thereafter, his birthdays were only small, close family affairs. He took not the slightest bit of interest in the proceedings and even the presents went unnoticed and untouched.
His eighth birthday is a few days away and again I am struggling to find presents. He has little interest in most toys and is destructive with the rest. Those light up spinning wands, which are cheap admittedly, used to be something he'd play with, but then he started to crack them open to break them, and he'd make his humming,distressed noise if they were near him, so I stopped buying them.
It is, in my opinion, such a shame he has no excitement about his impending birthday.
I would love him to be planning his party, who to invite, where it will be, what presents he wants, and see him bubbling with the thrill of his special day.
It is just another day to him.
We try to do something special for him, but as we cannot go out to restaurants with him anymore (due to an incident which I will talk about another time), theme parks hold no amusement for him, and he has no friends (which makes me sad to write, but he doesn't care or notice or need friends around him as he is such a solo, solitary child) who can come round to play, it is really just like any other day to him.
He will be sharing the morning at our local Mencap Junior Gateway scheme where I will provide a cake and candles for him to blow out, and the afternoon will be a trip to the park followed by his favourite food, McDonald's. Finally after weeks of "cola,chips,chicken" he will get some!
The day itself for me holds memories and sadness over the delivery and a lot of 'if onlys' and 'I wish'. I just cannot stop the thought that when he got stuck and was not breathing at birth I should have been more forceful with them, as I had been in active labour for 36 hours, the hormone drip was turned up to maximum with not much effect, and he was in distress. But they kept on saying "we'll give it another 30 minutes", which went on for a few hours. It was only when his heart beat stopped as he was just descending the first part of the birth canal, that they pressed the red button, alarms sounded everywhere, and the room filled with people. As he had started to descend, not crown, they wanted to get him out the exhaust way and not the sunroof, so with great indignity I was put in stirrups and he was yanked out of me, with me crying out that I was not contracting. Tubes were put down his mouth and oxygen and rubbing to get him going were given by the doctors. He recovered quickly and we only stayed in for four days.
I swore never to go through that again, and it took me three years before I felt ready. Second time around was much more positive, and with a 10lb 8oz baby that time, it was easier, believe it or not!
That time I just had a room full of midwives who asked to see me give birth to him, as we knew he was a whopper from a scan the previous week, and it was rare to see a big baby being born the exhaust pipe way. I still remember the gasps as they saw how big he actually was!
So, come Saturday, my big boy will turn 8. I don't feel old enough to be a mother to an 8 year old, let alone three children. But then I look in the mirror and see the lines and fatigue and realise I may not feel my age of 32, but I sure as hell look it, older even. I look so young and vibrant in the photos of the early days of motherhood - now I resemble a washer woman who has had three hours sleep in the past fortnight, but at least I have the joys of being a mum, something I am very grateful for.
His first birthday was a family celebration and a time when I had no clue he had special needs.
His second birthday was shared with his second cousin who was 13 days younger than him.
Even though we thought he had a hearing problem, I realised his difficulties ran a lot deeper as I could see the enormous differences between him and his second cousin,E. The differences were apparent when I was holding E and talking to her and even though her speech was still evolving, her understanding was profound. She responded to facial expressions and sought out contact with others. J was silent and uninterested in everyone.
We had this joint party at a family members house, and one person, who shall remain unnamed, passed comment -
It went along the lines of " oh girls are so much better than boys", "he's backwards" (meant in the derogatory sense, not as he was doing something back to front) and " he's so much trouble" ( as he wanted to climb the stairs for the hundredth time.
He was two. It was his birthday. He was well behaved and had never had a temper tantrum. Hurt? Yep. Still hurt? Oh yes as no apology was given.
Thereafter, his birthdays were only small, close family affairs. He took not the slightest bit of interest in the proceedings and even the presents went unnoticed and untouched.
His eighth birthday is a few days away and again I am struggling to find presents. He has little interest in most toys and is destructive with the rest. Those light up spinning wands, which are cheap admittedly, used to be something he'd play with, but then he started to crack them open to break them, and he'd make his humming,distressed noise if they were near him, so I stopped buying them.
It is, in my opinion, such a shame he has no excitement about his impending birthday.
I would love him to be planning his party, who to invite, where it will be, what presents he wants, and see him bubbling with the thrill of his special day.
It is just another day to him.
We try to do something special for him, but as we cannot go out to restaurants with him anymore (due to an incident which I will talk about another time), theme parks hold no amusement for him, and he has no friends (which makes me sad to write, but he doesn't care or notice or need friends around him as he is such a solo, solitary child) who can come round to play, it is really just like any other day to him.
He will be sharing the morning at our local Mencap Junior Gateway scheme where I will provide a cake and candles for him to blow out, and the afternoon will be a trip to the park followed by his favourite food, McDonald's. Finally after weeks of "cola,chips,chicken" he will get some!
The day itself for me holds memories and sadness over the delivery and a lot of 'if onlys' and 'I wish'. I just cannot stop the thought that when he got stuck and was not breathing at birth I should have been more forceful with them, as I had been in active labour for 36 hours, the hormone drip was turned up to maximum with not much effect, and he was in distress. But they kept on saying "we'll give it another 30 minutes", which went on for a few hours. It was only when his heart beat stopped as he was just descending the first part of the birth canal, that they pressed the red button, alarms sounded everywhere, and the room filled with people. As he had started to descend, not crown, they wanted to get him out the exhaust way and not the sunroof, so with great indignity I was put in stirrups and he was yanked out of me, with me crying out that I was not contracting. Tubes were put down his mouth and oxygen and rubbing to get him going were given by the doctors. He recovered quickly and we only stayed in for four days.
I swore never to go through that again, and it took me three years before I felt ready. Second time around was much more positive, and with a 10lb 8oz baby that time, it was easier, believe it or not!
That time I just had a room full of midwives who asked to see me give birth to him, as we knew he was a whopper from a scan the previous week, and it was rare to see a big baby being born the exhaust pipe way. I still remember the gasps as they saw how big he actually was!
So, come Saturday, my big boy will turn 8. I don't feel old enough to be a mother to an 8 year old, let alone three children. But then I look in the mirror and see the lines and fatigue and realise I may not feel my age of 32, but I sure as hell look it, older even. I look so young and vibrant in the photos of the early days of motherhood - now I resemble a washer woman who has had three hours sleep in the past fortnight, but at least I have the joys of being a mum, something I am very grateful for.
Saturday, 22 May 2010
Offensive words
Even before I had J I never made use of the many words people like to use to describe disabled children and adults.
'Spacker, spastic, retard, spaz,window licker', the list can go on.
I remember when Mencap was called The Spastics Society. It's name was changed mainly because the word spastic was now used as a derogatory term.
I don't know about you, but I get upset when so called 'friends' use any of the words above - even in jest.
Facebook is a great online place, but when you start making friends through friends you open yourself up to their 'status updates' which sometimes make me chuckle, other times leave be shocked.
Even certain close friends have been known to make a 'witty' statement which involves one of those words, and on one occasion I did reply to a (friend of a friend) persons 'status update' as the 'joke' they had allowed to be published was about 'spastics and crayons up noses' which will obviously amuse some people, but when I have a disabled child, it doesn't amuse me. I got a reply stating they too had a disabled child. Hmmm, well that's okay then I presume?
There are many groups on Facebook with a sole incentive to mock people with disabilities.
These groups get 'reported' but never seem to be stopped.
If you look at most of the 'Wall' comments the 'people' (I use the word loosely) that 'write' (ditto my previous brackets) have a low command of grammar,spelling,punctuation and common sense.
And because Facebook is now such a global domain, eclipsing Myspace,Bebo and um well all the other sites (I am not a teenager so I am not 'up' on what places they use) it is inevitable that people with little or no morals,decency or basic human kindness will find their equals through these vile 'groups' and spur each other on with childish jokes and puerile banter.
It is all I can do when out with J to be on guard for these low-lives who stare. What exactly are they staring at? Have they never seen a child before,is that it? Or is it that his innocence is offensive?
One time both J and I were in Boots. It was hectic with people, and the clever bods in management decided it was not busy enough to warrant putting another cashier on duty, as twenty people queueing was okay in their eyes.
So, J was getting frantic and the more I tried to calm him, the more he got louder.
Now, nearly everyone in the queue had guessed he was 'different' and so were not staring or making "tuts" towards us. But, there was a group of three girls, late teens I would have guessed, but the amount of make-up girls wear today, slutty clothes and hair do's that require a can of hairspray at each brushing, they could have been twelve. Their attitude was certainly that of silly little schoolgirls anyway.
They were snickering, laughing, pointing and mocking J and myself.
Now, years ago, at the start of our journey into autism, I would never have had the balls to say anything, but I took this opportunity to give these girls a lesson in humanity, something their parents and schooling had failed at.
I asked them what they thought they were doing. They sniggered.
I repeated the same question. I got a shrug.
Every single other person in the queue looked round to see what I was going to do or say.
I asked them why they thought it was appropriate to laugh and taunt myself and my son when it was plainly obvious A) I was struggling to maintain his behaviour and B) it was blatantly obvious he had special needs.
They went beetroot in colour. The sniggering stopped.
I asked them if they had heard of autism. "Nah" came the reply.
I gave them a brief description of it. They looked at the floor.
I asked for an apology. I got one.
I received a small round of applause from several people and a "well done love" from a bloke standing with his child.
Even now, I get so mad at how they made me feel in that queue.
Now this was a major event, but I have had many more smaller ones, with tuts, stares and pointing, and funnily enough never from other children, only the adults walking with their children. You'd think J had two heads, a green body and was space hoppering himself along the pavement the way some adults gawk.
I always ask the person who is staring or passing a comment what their problem is as my sons problem seems to be offending them.
How a child, who is babbling away to himself whilst sitting in a wheelchair can be so offensive or shocking is beyond me.
But humans are funny like that.
It is a shame so many lack any level of decency.
One group on Facebook was set up by people that worked for a mobile phone shop on Shirley High Street.
They would stand in their shop doorway and take photos of any disabled person passing by and post the pictures up on their group page with offensive captions. The scum who joined this group would add their dumb comments and all would be celebratory in their united bigotry.
Someone who uses Facebook and lives in Shirley reported this group to the Facebook Admins.
Guess what? Nothing was done. More people complained and pressed the 'Report' button. Nothing was done.
Innocent people with a disability were being photographed without their permission and ridiculed and mocked by a whole host of idiots with nothing better to do with their lives.
But Facebook admins couldn't be bothered to delete the group.
So, this woman who had made the first complaint went to the local news desk. She told them all about this group and the fact it was still allowed to be on Facebook despite the disgusting things being written about the unaware people.
The paper took up the case, and finally when it made the news, Facebook admins got off their overpaid and sycophantic behinds and deleted the group with a speed likened to me running away from a huge spider, but, with less of the screaming.
'Spacker, spastic, retard, spaz,window licker', the list can go on.
I remember when Mencap was called The Spastics Society. It's name was changed mainly because the word spastic was now used as a derogatory term.
I don't know about you, but I get upset when so called 'friends' use any of the words above - even in jest.
Facebook is a great online place, but when you start making friends through friends you open yourself up to their 'status updates' which sometimes make me chuckle, other times leave be shocked.
Even certain close friends have been known to make a 'witty' statement which involves one of those words, and on one occasion I did reply to a (friend of a friend) persons 'status update' as the 'joke' they had allowed to be published was about 'spastics and crayons up noses' which will obviously amuse some people, but when I have a disabled child, it doesn't amuse me. I got a reply stating they too had a disabled child. Hmmm, well that's okay then I presume?
There are many groups on Facebook with a sole incentive to mock people with disabilities.
These groups get 'reported' but never seem to be stopped.
If you look at most of the 'Wall' comments the 'people' (I use the word loosely) that 'write' (ditto my previous brackets) have a low command of grammar,spelling,punctuation and common sense.
And because Facebook is now such a global domain, eclipsing Myspace,Bebo and um well all the other sites (I am not a teenager so I am not 'up' on what places they use) it is inevitable that people with little or no morals,decency or basic human kindness will find their equals through these vile 'groups' and spur each other on with childish jokes and puerile banter.
It is all I can do when out with J to be on guard for these low-lives who stare. What exactly are they staring at? Have they never seen a child before,is that it? Or is it that his innocence is offensive?
One time both J and I were in Boots. It was hectic with people, and the clever bods in management decided it was not busy enough to warrant putting another cashier on duty, as twenty people queueing was okay in their eyes.
So, J was getting frantic and the more I tried to calm him, the more he got louder.
Now, nearly everyone in the queue had guessed he was 'different' and so were not staring or making "tuts" towards us. But, there was a group of three girls, late teens I would have guessed, but the amount of make-up girls wear today, slutty clothes and hair do's that require a can of hairspray at each brushing, they could have been twelve. Their attitude was certainly that of silly little schoolgirls anyway.
They were snickering, laughing, pointing and mocking J and myself.
Now, years ago, at the start of our journey into autism, I would never have had the balls to say anything, but I took this opportunity to give these girls a lesson in humanity, something their parents and schooling had failed at.
I asked them what they thought they were doing. They sniggered.
I repeated the same question. I got a shrug.
Every single other person in the queue looked round to see what I was going to do or say.
I asked them why they thought it was appropriate to laugh and taunt myself and my son when it was plainly obvious A) I was struggling to maintain his behaviour and B) it was blatantly obvious he had special needs.
They went beetroot in colour. The sniggering stopped.
I asked them if they had heard of autism. "Nah" came the reply.
I gave them a brief description of it. They looked at the floor.
I asked for an apology. I got one.
I received a small round of applause from several people and a "well done love" from a bloke standing with his child.
Even now, I get so mad at how they made me feel in that queue.
Now this was a major event, but I have had many more smaller ones, with tuts, stares and pointing, and funnily enough never from other children, only the adults walking with their children. You'd think J had two heads, a green body and was space hoppering himself along the pavement the way some adults gawk.
I always ask the person who is staring or passing a comment what their problem is as my sons problem seems to be offending them.
How a child, who is babbling away to himself whilst sitting in a wheelchair can be so offensive or shocking is beyond me.
But humans are funny like that.
It is a shame so many lack any level of decency.
One group on Facebook was set up by people that worked for a mobile phone shop on Shirley High Street.
They would stand in their shop doorway and take photos of any disabled person passing by and post the pictures up on their group page with offensive captions. The scum who joined this group would add their dumb comments and all would be celebratory in their united bigotry.
Someone who uses Facebook and lives in Shirley reported this group to the Facebook Admins.
Guess what? Nothing was done. More people complained and pressed the 'Report' button. Nothing was done.
Innocent people with a disability were being photographed without their permission and ridiculed and mocked by a whole host of idiots with nothing better to do with their lives.
But Facebook admins couldn't be bothered to delete the group.
So, this woman who had made the first complaint went to the local news desk. She told them all about this group and the fact it was still allowed to be on Facebook despite the disgusting things being written about the unaware people.
The paper took up the case, and finally when it made the news, Facebook admins got off their overpaid and sycophantic behinds and deleted the group with a speed likened to me running away from a huge spider, but, with less of the screaming.
Thursday, 20 May 2010
Autistic Superstars BBC3
What a fabulous and inspiring programme.
The participants were amazing and their talents were tear inducing.
Reggie Yates, the presenter, had such warmth and affection towards these people and his relaxed approach to them all helped, I believe, in bringing their talents out in front of the live audience.
About half way through the programme I realised I was watching the show with a huge grin on my face. I was so proud of what I was witnessing.
I also loved to see the stars in their everyday lives. The young lady, Carly, made me smile with her impersonations and dramatic walking out of rooms. Such a beautiful character and an awesome voice!
The whizz on the piano, Derrick, is truly a dynamo with his skill and perception of music.
I could almost see Simon Cowell watching, little pound signs appearing in his eyes, at the image of teaming these great artists together on an album.
At the start of our journey into the world of autism, I was hit many times with the line " oh I wonder what talent J will have...most autistics are great artists, so maybe he'll be able to recreate great art masterpieces."
I never really thought much about whether he had a secret talent hidden away.
I think I focused on educating myself and helping to make our lives easier to live day to day.
J has never had an opportunity to play the piano properly. He and his brother have a huge electronic keyboard, but J is not keen on it and so I think I can safely say he is not the next Andre Previn.
Art wise, he will repetitively draw the same image, currently people. They change from stick drawings to more spirally bodies with proportionate heads. There are no intricate drawings of buildings just yet.
The participants were amazing and their talents were tear inducing.
Reggie Yates, the presenter, had such warmth and affection towards these people and his relaxed approach to them all helped, I believe, in bringing their talents out in front of the live audience.
About half way through the programme I realised I was watching the show with a huge grin on my face. I was so proud of what I was witnessing.
I also loved to see the stars in their everyday lives. The young lady, Carly, made me smile with her impersonations and dramatic walking out of rooms. Such a beautiful character and an awesome voice!
The whizz on the piano, Derrick, is truly a dynamo with his skill and perception of music.
I could almost see Simon Cowell watching, little pound signs appearing in his eyes, at the image of teaming these great artists together on an album.
At the start of our journey into the world of autism, I was hit many times with the line " oh I wonder what talent J will have...most autistics are great artists, so maybe he'll be able to recreate great art masterpieces."
I never really thought much about whether he had a secret talent hidden away.
I think I focused on educating myself and helping to make our lives easier to live day to day.
J has never had an opportunity to play the piano properly. He and his brother have a huge electronic keyboard, but J is not keen on it and so I think I can safely say he is not the next Andre Previn.
Art wise, he will repetitively draw the same image, currently people. They change from stick drawings to more spirally bodies with proportionate heads. There are no intricate drawings of buildings just yet.
Tuesday, 18 May 2010
In the news
Another sad story has emerged. A mother has been charged with murder.
She is accused of murdering her 11 year old son.
He apparently had severe autism, had little speech and used a wheelchair.
I remember a year or so ago another mother who, along with her autistic son (whose age I am not sure of) jumped off a bridge to their deaths.
Recently in the news were the verdicts of another set of parents, who were found guilty of murdering their daughter, who had severe learning difficulties.
It is all so sad.
One wonders why these people went to this extreme length. Did they not receive adequate support and help from those that should have been providing it?
Did they become too overwhelmed with their childs needs and could see the future was one that would be the same, only harder and harder as the child grew bigger?
Were they suffering from depression?
We may never know.
But, those that were in these peoples local authority need to look at whether they could have been more pro-active and supportive.
Were there signs? Did the mothers go to their GPs with depression? Did their social worker keep abrest of their circumstances and keep in contact with them?
It is a sad indictment on our society that until something terrible happens, there never seems to be an assessment of duties and a change in the way staff in charge of these children and their families work.
Why did these people slip through?
I know from experience that when we were desperate we were promised all sorts of help and support, with daily phone calls from the disability team in the social services. But after day two, we never heard from them. They never followed up. Just left us to it. Until we called them.
After dealing with Js behaviours for a few years, and a year after having my second child, I developed depression.
It is something I have to live with as I know it will never leave me completely.
I am not taking any anti-depressants at present as I was pregnant and am now breastfeeding and even though there are certain varieties of tablets that are apparently safe, I am not prepared to take the risk.
On low days I do feel the need to keep indoors and keep my socialising to a minimum, as I feel worthless. As I am aware of my depression, I am always keeping myself in check. My hubby is fully aware of my illness and I hope in the event I spiral and do not realise, he will, and will get me help to better myself.
On my low days, I do feel useless and powerless and that I am not a worthy mother, wife and friend. On my good days I feel I can achieve anything.
So, when I read these stories, about these mothers and fathers that feel compelled to end either their childs life, or both of their lives, I have compassion. I do not judge them with contempt.
How can we as a society ever improve and help people like them, if we sit back and judge them?
I know I have been judged for talking about my depression before. But, I don't feel ashamed by it. Why should I? I am not superwoman. I just try to do my best.
She is accused of murdering her 11 year old son.
He apparently had severe autism, had little speech and used a wheelchair.
I remember a year or so ago another mother who, along with her autistic son (whose age I am not sure of) jumped off a bridge to their deaths.
Recently in the news were the verdicts of another set of parents, who were found guilty of murdering their daughter, who had severe learning difficulties.
It is all so sad.
One wonders why these people went to this extreme length. Did they not receive adequate support and help from those that should have been providing it?
Did they become too overwhelmed with their childs needs and could see the future was one that would be the same, only harder and harder as the child grew bigger?
Were they suffering from depression?
We may never know.
But, those that were in these peoples local authority need to look at whether they could have been more pro-active and supportive.
Were there signs? Did the mothers go to their GPs with depression? Did their social worker keep abrest of their circumstances and keep in contact with them?
It is a sad indictment on our society that until something terrible happens, there never seems to be an assessment of duties and a change in the way staff in charge of these children and their families work.
Why did these people slip through?
I know from experience that when we were desperate we were promised all sorts of help and support, with daily phone calls from the disability team in the social services. But after day two, we never heard from them. They never followed up. Just left us to it. Until we called them.
After dealing with Js behaviours for a few years, and a year after having my second child, I developed depression.
It is something I have to live with as I know it will never leave me completely.
I am not taking any anti-depressants at present as I was pregnant and am now breastfeeding and even though there are certain varieties of tablets that are apparently safe, I am not prepared to take the risk.
On low days I do feel the need to keep indoors and keep my socialising to a minimum, as I feel worthless. As I am aware of my depression, I am always keeping myself in check. My hubby is fully aware of my illness and I hope in the event I spiral and do not realise, he will, and will get me help to better myself.
On my low days, I do feel useless and powerless and that I am not a worthy mother, wife and friend. On my good days I feel I can achieve anything.
So, when I read these stories, about these mothers and fathers that feel compelled to end either their childs life, or both of their lives, I have compassion. I do not judge them with contempt.
How can we as a society ever improve and help people like them, if we sit back and judge them?
I know I have been judged for talking about my depression before. But, I don't feel ashamed by it. Why should I? I am not superwoman. I just try to do my best.
Sunday, 16 May 2010
Toileting
The following entry is of a rather personal issue - toileting, so if you are eating or just have a weak stomach, I'd advise you miss reading it as I talk frankly about it.
I was chatting to a friend the other day and it made me remember how hard it was to toilet train J.
He was still using pull ups at age four. We were given a prescribed amount every three months via the Continence Service (in Cheshire) as he was too big for the regular pull ups on the market. Once these ran out, we were not allowed to order more until a set date. Kind of unfair really and always had me in a panic in the last few weeks before re-order time, as they were dwindling.
At his school we agreed I would send in a tonne of trousers,pants and socks for him, as we had decided to go cold turkey with him on the weeing front.
They said they had a good success rate at this method, (around two weeks) and after the Continence Nurse had failed in getting J to use a toilet (through fact sheets and PECS) I was happy to give it a whirl.
His first day without pull ups at school he only had one accident and used the toilet for the first time.
The second day, and he had no accidents, used the toilet for wees, and from that day, he didn't use the pull ups for wees. We had no accidents and he was happy to use the toilet.
He surprised even the teacher with his swift change of direction and I was so impressed with his efforts.
But, going for a poo was a major drama for him now as he must have clicked that the toilet was the place to do that too, but a wee takes a few second, whereas a poo requires more time and attention, and here his fears began.
We left it for a few months and whenever he needed to go, he would bring me a pull up and I would oblige him with putting it on. He'd perform the business and I'd change him and put him back into regular pants.
But, I knew we had to tackle the issue again as he then became terrified of going for a poo, even in his pull ups.
He started to hold it in. At first it was for a few days, but then this started to turn into a few weeks between him giving in a going.
I can still remember the pain he was in, the smell and the hunched over walk he took to as he couldn't stand up straight.
He would put his fingers inside and fiddle about, making his hands and clothes absolutely stink.
My GP prescribed a liquid laxative for him to take.
Just getting him to take it was a battle in itself, and I must say I tried it and it tasted like liquid candy floss, dusted with icing sugar and topped with some sugar for good measure. Sickly sweet.
I gave him the prescribed dosage. He relented the next day. Hurrah! I thought that would be the end of it.
But no. He then held onto the next lot. Two whole weeks.
He was crying in pain and would rock about on the floor in the foetal position.
I would carry him to the toilet and sit him on it, encouraging him to go. He'd scream and cry and run off in his hunched up manner.
I gave him more laxative solution.
Nothing.
Three days of laxatives,and nothing.
His tummy was growling and he'd be wailing with the pain, but he would not give in.
By day fourteen, we gave him an extra dose of the solution.
At 11pm that night I realised the end was in sight.
I lay in my bed, awake, and listened to him wombling about his room. He'd come out of it onto the landing, and groan. I would go out there and tell him to just give in a go.
This went on for three hours.
At 2AM he let out a huge cry, and I could see him straining and going.
My hubby was awake as well and it was his turn to change him. I stood by consoling J as he was upset but shakily relieved and what he produced looked like an imprint of the colon - all folded around like a concertinaed fan. I have never seen so much in my life and I just do not know how he managed to not just give in sooner.
Unfortunately this was not the end of his refusal to go. But, he never held on for days, rather he'd go when he needed to.
So, we had tackled the refusal to go. How were we going to tackle him using the toilet for it.
We knew he was not scared to wee in it, it was just a matter of him translating this over to the pooing.
We choose not to force him and just let him develop confidence at his own pace.
One evening, just before bed, the husband and I were sitting in the lounge, when I heard a toilet flush. I made the husband sprint into the bathroom to see what J had done, and he was greeted by a smell! Not very nice to read, but bloody marvellous to us!
We praised him like never before and then had to calm it down as he was getting scared of our over exuberance.
But, from that evening on, he never needed the pull ups again. He has always used the toilet. I never had to prompt him either.
I do believe our 'back off' approach worked.
All we have to deal with nowadays is his occasional weeing in the garden (which has died down since my blog about it) and his weeing on the upstairs hall carpet ( the only carpet in the house as the other floors are all wood - as it is easier to clean vomit up, than off of a carpet and as he is a serial vomitter I got fed up of stained carpets and the smell lingering).
Oh and he still has to be monitored to be hygienic when using the toilet as we have had smearing incidents and using towels as a wipe. But, when I think back to his refusal days I see how bad he got before we started to move forward.
I was chatting to a friend the other day and it made me remember how hard it was to toilet train J.
He was still using pull ups at age four. We were given a prescribed amount every three months via the Continence Service (in Cheshire) as he was too big for the regular pull ups on the market. Once these ran out, we were not allowed to order more until a set date. Kind of unfair really and always had me in a panic in the last few weeks before re-order time, as they were dwindling.
At his school we agreed I would send in a tonne of trousers,pants and socks for him, as we had decided to go cold turkey with him on the weeing front.
They said they had a good success rate at this method, (around two weeks) and after the Continence Nurse had failed in getting J to use a toilet (through fact sheets and PECS) I was happy to give it a whirl.
His first day without pull ups at school he only had one accident and used the toilet for the first time.
The second day, and he had no accidents, used the toilet for wees, and from that day, he didn't use the pull ups for wees. We had no accidents and he was happy to use the toilet.
He surprised even the teacher with his swift change of direction and I was so impressed with his efforts.
But, going for a poo was a major drama for him now as he must have clicked that the toilet was the place to do that too, but a wee takes a few second, whereas a poo requires more time and attention, and here his fears began.
We left it for a few months and whenever he needed to go, he would bring me a pull up and I would oblige him with putting it on. He'd perform the business and I'd change him and put him back into regular pants.
But, I knew we had to tackle the issue again as he then became terrified of going for a poo, even in his pull ups.
He started to hold it in. At first it was for a few days, but then this started to turn into a few weeks between him giving in a going.
I can still remember the pain he was in, the smell and the hunched over walk he took to as he couldn't stand up straight.
He would put his fingers inside and fiddle about, making his hands and clothes absolutely stink.
My GP prescribed a liquid laxative for him to take.
Just getting him to take it was a battle in itself, and I must say I tried it and it tasted like liquid candy floss, dusted with icing sugar and topped with some sugar for good measure. Sickly sweet.
I gave him the prescribed dosage. He relented the next day. Hurrah! I thought that would be the end of it.
But no. He then held onto the next lot. Two whole weeks.
He was crying in pain and would rock about on the floor in the foetal position.
I would carry him to the toilet and sit him on it, encouraging him to go. He'd scream and cry and run off in his hunched up manner.
I gave him more laxative solution.
Nothing.
Three days of laxatives,and nothing.
His tummy was growling and he'd be wailing with the pain, but he would not give in.
By day fourteen, we gave him an extra dose of the solution.
At 11pm that night I realised the end was in sight.
I lay in my bed, awake, and listened to him wombling about his room. He'd come out of it onto the landing, and groan. I would go out there and tell him to just give in a go.
This went on for three hours.
At 2AM he let out a huge cry, and I could see him straining and going.
My hubby was awake as well and it was his turn to change him. I stood by consoling J as he was upset but shakily relieved and what he produced looked like an imprint of the colon - all folded around like a concertinaed fan. I have never seen so much in my life and I just do not know how he managed to not just give in sooner.
Unfortunately this was not the end of his refusal to go. But, he never held on for days, rather he'd go when he needed to.
So, we had tackled the refusal to go. How were we going to tackle him using the toilet for it.
We knew he was not scared to wee in it, it was just a matter of him translating this over to the pooing.
We choose not to force him and just let him develop confidence at his own pace.
One evening, just before bed, the husband and I were sitting in the lounge, when I heard a toilet flush. I made the husband sprint into the bathroom to see what J had done, and he was greeted by a smell! Not very nice to read, but bloody marvellous to us!
We praised him like never before and then had to calm it down as he was getting scared of our over exuberance.
But, from that evening on, he never needed the pull ups again. He has always used the toilet. I never had to prompt him either.
I do believe our 'back off' approach worked.
All we have to deal with nowadays is his occasional weeing in the garden (which has died down since my blog about it) and his weeing on the upstairs hall carpet ( the only carpet in the house as the other floors are all wood - as it is easier to clean vomit up, than off of a carpet and as he is a serial vomitter I got fed up of stained carpets and the smell lingering).
Oh and he still has to be monitored to be hygienic when using the toilet as we have had smearing incidents and using towels as a wipe. But, when I think back to his refusal days I see how bad he got before we started to move forward.
Saturday, 15 May 2010
Babies
J loves babies.
He will lie next to W on our bed, and looks at his face close up.
He will point at W and say "baby" or his name.
When my friends were visiting our house last week, J kept on walking into the room and pointing at each baby with a smile on his face. He was trying to say their names too.
Now, I have to still be careful with him and W. I cannot leave him alone in the same room, for fear of him trying to pick him up.
I have seen how he picks up dollies, and I don't think W would be too impressed with being upside down, dangling by one leg, as he is prodded in the tummy, with J saying "baby" at him.
When J was four ( well he was three weeks off being four when O was born), his life changed from being the only child, to having to share attention and affection.
He was never nasty, and I don't believe he showed any signs of hidden upset which manifested in undesirable behaviours.
There are only two occasions that J caused a situation which ended up with a baby O crying and in distress.
The first was when O was around 4 weeks old. He was on our bed, fresh from a nappy change.
I had him in the centre of the bed as a precaution.
I had gone into the other bedroom to fetch something, and as I walked back down the hall I could see J pulling the duvet off of the bed, with a helpless O still within it.
I yelled out "no" but J was determined to yank this duvet off, and I just couldn't reach the bed in time to save O from landing on the floor.
The second event involved O, strapped into his bouncy chair.
Again, I had left the room to go to the kitchen to get a drink.
On walking back, down the hall, I saw J had un-clipped the straps.
This all occurred in slow motion to me, as I yelled "no", but J had sprung the chair as far back as he could, and then let go.
O went flying forward, like a baby bird being catapulted out of a nest, and landed with a thud, followed by ear piercing screams - his and mine.
O was very clingy to me for ages after those incidents and even ( in my opinion) had nightmares about it, even though he was a little baby, as he would cry so heart wrenching in his sleep.
J never understood how his actions could have had serious implications, and to him it was just a game.
As those two events are still very fresh in my mind, I will not allow it to happen again this time around.
He will lie next to W on our bed, and looks at his face close up.
He will point at W and say "baby" or his name.
When my friends were visiting our house last week, J kept on walking into the room and pointing at each baby with a smile on his face. He was trying to say their names too.
Now, I have to still be careful with him and W. I cannot leave him alone in the same room, for fear of him trying to pick him up.
I have seen how he picks up dollies, and I don't think W would be too impressed with being upside down, dangling by one leg, as he is prodded in the tummy, with J saying "baby" at him.
When J was four ( well he was three weeks off being four when O was born), his life changed from being the only child, to having to share attention and affection.
He was never nasty, and I don't believe he showed any signs of hidden upset which manifested in undesirable behaviours.
There are only two occasions that J caused a situation which ended up with a baby O crying and in distress.
The first was when O was around 4 weeks old. He was on our bed, fresh from a nappy change.
I had him in the centre of the bed as a precaution.
I had gone into the other bedroom to fetch something, and as I walked back down the hall I could see J pulling the duvet off of the bed, with a helpless O still within it.
I yelled out "no" but J was determined to yank this duvet off, and I just couldn't reach the bed in time to save O from landing on the floor.
The second event involved O, strapped into his bouncy chair.
Again, I had left the room to go to the kitchen to get a drink.
On walking back, down the hall, I saw J had un-clipped the straps.
This all occurred in slow motion to me, as I yelled "no", but J had sprung the chair as far back as he could, and then let go.
O went flying forward, like a baby bird being catapulted out of a nest, and landed with a thud, followed by ear piercing screams - his and mine.
O was very clingy to me for ages after those incidents and even ( in my opinion) had nightmares about it, even though he was a little baby, as he would cry so heart wrenching in his sleep.
J never understood how his actions could have had serious implications, and to him it was just a game.
As those two events are still very fresh in my mind, I will not allow it to happen again this time around.
Words
As I have explained before, J has limited speech and language.
For over a year he would say "basheelishee" every day or so, and I could never work out what he was trying to say.
One day we were watching Bear in the Big Blue House on DVD and the episode was about Doc Hog visiting Bears house to see all his friends,Tutter,Pip and Pop, Ojo and Treelo ( I know you don't need to know their names, but hey ho!) to give them a health check.
One of the things Doc Hog had to do was give them their vaccinations and J immeadiately said "basheelishee" and so finally I twigged he meant the word 'vaccination'. The look on his face when I repeated it back to him was priceless.
There are many more words like this, some of which I still am in the dark over, two for which I have no idea about what he means, but the way he pronounces them is very embarrasing.
The first word he says is "ahorneehouse" which is mortyfying when he yells it out randomly in public, and has no reference to our house whatsoever!
The second word is "aborsha". Again, this word has never been uttered in front of him, with him nearby, never. I have no idea what he is meaning, but to others it sounds so like 'abortion' that it embarrasses me to the point of shame, which I should'nt feel, but as it sounds so like it, I get worried people cast bad opinions over us.
*I am editing this as I have just heard another word he uses and thought I'd add it here.....
He says "bitch" for beach. It is a more drawn out "biiiitch" but it sounds so like it that at first I thought that was what he was saying. But I now know it is beach he means, and it is a word he enjoys saying, over and over again, whether in public or private!*
Now, nursery rhymes are another source of fun. Not matter how many times I repeat the song to him, he always sings it his way.
The latest is this -
"Marys Marys like a cherry,a cockelshell a huh a huh". That full sentence is for Mary Mary Quite Contrary rhyme, but he refuses to sing the full and proper version.
For over a year he would say "basheelishee" every day or so, and I could never work out what he was trying to say.
One day we were watching Bear in the Big Blue House on DVD and the episode was about Doc Hog visiting Bears house to see all his friends,Tutter,Pip and Pop, Ojo and Treelo ( I know you don't need to know their names, but hey ho!) to give them a health check.
One of the things Doc Hog had to do was give them their vaccinations and J immeadiately said "basheelishee" and so finally I twigged he meant the word 'vaccination'. The look on his face when I repeated it back to him was priceless.
There are many more words like this, some of which I still am in the dark over, two for which I have no idea about what he means, but the way he pronounces them is very embarrasing.
The first word he says is "ahorneehouse" which is mortyfying when he yells it out randomly in public, and has no reference to our house whatsoever!
The second word is "aborsha". Again, this word has never been uttered in front of him, with him nearby, never. I have no idea what he is meaning, but to others it sounds so like 'abortion' that it embarrasses me to the point of shame, which I should'nt feel, but as it sounds so like it, I get worried people cast bad opinions over us.
*I am editing this as I have just heard another word he uses and thought I'd add it here.....
He says "bitch" for beach. It is a more drawn out "biiiitch" but it sounds so like it that at first I thought that was what he was saying. But I now know it is beach he means, and it is a word he enjoys saying, over and over again, whether in public or private!*
Now, nursery rhymes are another source of fun. Not matter how many times I repeat the song to him, he always sings it his way.
The latest is this -
"Marys Marys like a cherry,a cockelshell a huh a huh". That full sentence is for Mary Mary Quite Contrary rhyme, but he refuses to sing the full and proper version.
Friday, 14 May 2010
My Third Child
I mentioned in a few posts back about my third child, my 3 month old baby.
I noticed a problem with his eyes when he was around four weeks old. Firstly his pupils were always enlarged and then his eyes started to move around and around, not stopping.
At his six week check, his eyes were going left and right almost all the time of his waking hours.
I had done some research and came across a condition called nystagmus.
http://www.lowvision.org/nystagmus.htm
The GP mocked me when I asked her to look at his eyes. She said it was a rare condition and would not be very likely. This mocking was soon replaced with an "hmmm" followed by her saying she too thought it was nystagmus.
It was not as bad as it has now become however.
Unfortunately in my area, babies are not allowed to be referred until they are nine months old, and then on top of that is a ten month waiting list.
As I had read that brain tumours are linked to vertical nystagmus I was worried. Worried because his eyes now moved vertical as well as horizontal.
I took him back to the GP a few weeks later as I was now concerned that he was not able to see.
The only way we would be seen by a specialist she said was if we went private.
So we did.
What choice did we have? Risk our baby's health? Let the NHS make his eyes worse with no early intervention?
He has now been seen by a paediatric ophthalmologist and had several electro diagnostic tests carried out.
They concluded that his nystagmus is the rarest form - up and down (vertical) left and right (horizontal) and corner to corner (no idea what they term that as).
Most nystagmus babies and children have only one presentation which is usually the horizontal.
Thankfully, he does show signs he has some vision. To what extent we will not know as of yet, but his brain responded to the flashing images when he was wired up to the machine.
So now I have gone sensory toy mad for him.
His cot is a little multi sensory gym, with bold black and white patterns in every direction so that wherever his eyes are flicking to, he will have something there to stimulate him and his brain.
I also find myself singing out loud around the house, so that he always know I am about, even if he cannot see me.
His problem is amplified when I see my two friends who had babies of nearly the exact same age ( 7 days and 1 day older than W).
Their babies engage you with their eyes when they see you in the room. They follow objects and try to gain attention by looking at you.
My poor W cannot do this.
Going back to the brain tumour risk...
We are waiting for an MRI scan.
Again privately as it is not available on the NHS until after the referral and being seen by a specialist ( so around two years of age then - most helpful).
The risk is not high, the P/O told us, but it is a possibility.
So, I now have two children with special needs.
Is it a wonder I wander around in a daze so much?!
I noticed a problem with his eyes when he was around four weeks old. Firstly his pupils were always enlarged and then his eyes started to move around and around, not stopping.
At his six week check, his eyes were going left and right almost all the time of his waking hours.
I had done some research and came across a condition called nystagmus.
http://www.lowvision.org/nystagmus.htm
The GP mocked me when I asked her to look at his eyes. She said it was a rare condition and would not be very likely. This mocking was soon replaced with an "hmmm" followed by her saying she too thought it was nystagmus.
It was not as bad as it has now become however.
Unfortunately in my area, babies are not allowed to be referred until they are nine months old, and then on top of that is a ten month waiting list.
As I had read that brain tumours are linked to vertical nystagmus I was worried. Worried because his eyes now moved vertical as well as horizontal.
I took him back to the GP a few weeks later as I was now concerned that he was not able to see.
The only way we would be seen by a specialist she said was if we went private.
So we did.
What choice did we have? Risk our baby's health? Let the NHS make his eyes worse with no early intervention?
He has now been seen by a paediatric ophthalmologist and had several electro diagnostic tests carried out.
They concluded that his nystagmus is the rarest form - up and down (vertical) left and right (horizontal) and corner to corner (no idea what they term that as).
Most nystagmus babies and children have only one presentation which is usually the horizontal.
Thankfully, he does show signs he has some vision. To what extent we will not know as of yet, but his brain responded to the flashing images when he was wired up to the machine.
So now I have gone sensory toy mad for him.
His cot is a little multi sensory gym, with bold black and white patterns in every direction so that wherever his eyes are flicking to, he will have something there to stimulate him and his brain.
I also find myself singing out loud around the house, so that he always know I am about, even if he cannot see me.
His problem is amplified when I see my two friends who had babies of nearly the exact same age ( 7 days and 1 day older than W).
Their babies engage you with their eyes when they see you in the room. They follow objects and try to gain attention by looking at you.
My poor W cannot do this.
Going back to the brain tumour risk...
We are waiting for an MRI scan.
Again privately as it is not available on the NHS until after the referral and being seen by a specialist ( so around two years of age then - most helpful).
The risk is not high, the P/O told us, but it is a possibility.
So, I now have two children with special needs.
Is it a wonder I wander around in a daze so much?!
Thursday, 13 May 2010
Self Harm and hurting others
When J was four years old he started to hurt me.
Not just the odd push and shove, but rather violent hitting, biting and throwing objects at me.
He would come into our room in the night, armed with books, DVD cases etc and throw them at my head.
This was just the start of it though.
He progressed to biting me so hard he would draw blood.
We were referred to a psychologist who would visit my house once a week.
This phsyc was a student, and so he was always armed with reference books and was keen to learn.
The advice he gave, and which was backed up by the lead psych, was for me, and others around me watching this behaviour, to just ignore it. Not make a comment to J, not say "ow", nothing.
This I did.
But, it was flipping painful.
One time, we were at my aunts house, where her friend was visiting along with her two young children.
I was happily chatting away to them, when J approached and grabbed my left hand.
I continued to chat away to them, after saying "hello" to J.
He then took my hand and chomped down hard onto the back of it, where the veins stick out.
My aunt and her friend looked on in horror, but I managed to say, through strained teeth, to just ignore him and to continue to chat to me.
When he had finished his feast, he let go, and wandered off.
I looked down to see blood trickling from a huge bite mark.
This was one of the worst incidents of his aggression towards me, and thankfully, after around 8 weeks, it petered out.
Last year, he took to head banging.
He would head bang walls and door frames, the inside of the car window,the floor ( we have wooden floors) and the stair banister.
It got so bad that he made his forehead become an open wound, which would scab up overnight then be re-opened the next day with fresh banging.
He enjoyed doing it. Especially when the scab would open and bleed. He decorated his bedroom wall with his blood, making patterns which he would stand back and admire.
I again was told to ignore this behaviour as it would be rewarding him if I did.
I would watch him, through the crack in a door, and see him sitting happily, perhaps drawing on his magnetic drawer, or watching Bear in the Big Blue House, and suddenly he would jump up and run towards the wall, crack his head, laugh, and sit back down. A lot of the time he would head bang every few seconds over a period of five minutes.
At his Christmas Nativity play at his school he was an Angel. However, resplendent in a white gown, halo atop his head, he looked a rather bashed up Angel with a huge scab on his forehead.
This head banging ceased around the New Year thankfully.
But, over these last few days it has started up again. Every so often I will hear a bang and look to see him standing by a wall with a huge grin on his face.
Only twice did he bang so hard that it made him cry.
He repeated this behaviour at school as well. I had mentioned it and was told that he had not displayed it. I was sceptical however.
After I had taken him to see our GP to report what he was doing to himself ( and also so that it was recorded down in case I was accused of child battery) the school suddenly said that yes in fact he was doing this. One incident was at a computer table, where he was working happily away with the teacher, when out of nowhere, J smashed his head down onto the desk. He then continued to work on the computer, much to the teachers shock.
Another less injurious behaviour he does, which is sporadic but intense at the time he is doing it, is hitting his legs.
He will roll up his trousers to reveal bare calves, and then whack them really hard with his hand.
Again, he appears to be really enjoying himself.
My Grandma, who is no longer with us, once told me that all children go through phases of annoying,destructive, or unpleasant behaviours, and that they last around six weeks before they move onto something else, so it will not last forever. For the majority of J's behaviours this is the case thankfully (like when he would wake in the night and go round the house turning on all the lights - I resolved this by switching the fuse box switch off for all the lights at night, which angered J, but stopped this light switching at night in its tracks).
My worry about the future and J's self harm is that he finds the stimulus from more dangerous objects and will be risking his life or causing permanent damage to his brain or body.
I must say that if a pysch tells me to ignore dangerous behaviours, they will be asked to leave as we will need a more constructive approach and not a swift and easy brush off.
I can only keep my fingers crossed that this route is not one J will take.
Not just the odd push and shove, but rather violent hitting, biting and throwing objects at me.
He would come into our room in the night, armed with books, DVD cases etc and throw them at my head.
This was just the start of it though.
He progressed to biting me so hard he would draw blood.
We were referred to a psychologist who would visit my house once a week.
This phsyc was a student, and so he was always armed with reference books and was keen to learn.
The advice he gave, and which was backed up by the lead psych, was for me, and others around me watching this behaviour, to just ignore it. Not make a comment to J, not say "ow", nothing.
This I did.
But, it was flipping painful.
One time, we were at my aunts house, where her friend was visiting along with her two young children.
I was happily chatting away to them, when J approached and grabbed my left hand.
I continued to chat away to them, after saying "hello" to J.
He then took my hand and chomped down hard onto the back of it, where the veins stick out.
My aunt and her friend looked on in horror, but I managed to say, through strained teeth, to just ignore him and to continue to chat to me.
When he had finished his feast, he let go, and wandered off.
I looked down to see blood trickling from a huge bite mark.
This was one of the worst incidents of his aggression towards me, and thankfully, after around 8 weeks, it petered out.
Last year, he took to head banging.
He would head bang walls and door frames, the inside of the car window,the floor ( we have wooden floors) and the stair banister.
It got so bad that he made his forehead become an open wound, which would scab up overnight then be re-opened the next day with fresh banging.
He enjoyed doing it. Especially when the scab would open and bleed. He decorated his bedroom wall with his blood, making patterns which he would stand back and admire.
I again was told to ignore this behaviour as it would be rewarding him if I did.
I would watch him, through the crack in a door, and see him sitting happily, perhaps drawing on his magnetic drawer, or watching Bear in the Big Blue House, and suddenly he would jump up and run towards the wall, crack his head, laugh, and sit back down. A lot of the time he would head bang every few seconds over a period of five minutes.
At his Christmas Nativity play at his school he was an Angel. However, resplendent in a white gown, halo atop his head, he looked a rather bashed up Angel with a huge scab on his forehead.
This head banging ceased around the New Year thankfully.
But, over these last few days it has started up again. Every so often I will hear a bang and look to see him standing by a wall with a huge grin on his face.
Only twice did he bang so hard that it made him cry.
He repeated this behaviour at school as well. I had mentioned it and was told that he had not displayed it. I was sceptical however.
After I had taken him to see our GP to report what he was doing to himself ( and also so that it was recorded down in case I was accused of child battery) the school suddenly said that yes in fact he was doing this. One incident was at a computer table, where he was working happily away with the teacher, when out of nowhere, J smashed his head down onto the desk. He then continued to work on the computer, much to the teachers shock.
Another less injurious behaviour he does, which is sporadic but intense at the time he is doing it, is hitting his legs.
He will roll up his trousers to reveal bare calves, and then whack them really hard with his hand.
Again, he appears to be really enjoying himself.
My Grandma, who is no longer with us, once told me that all children go through phases of annoying,destructive, or unpleasant behaviours, and that they last around six weeks before they move onto something else, so it will not last forever. For the majority of J's behaviours this is the case thankfully (like when he would wake in the night and go round the house turning on all the lights - I resolved this by switching the fuse box switch off for all the lights at night, which angered J, but stopped this light switching at night in its tracks).
My worry about the future and J's self harm is that he finds the stimulus from more dangerous objects and will be risking his life or causing permanent damage to his brain or body.
I must say that if a pysch tells me to ignore dangerous behaviours, they will be asked to leave as we will need a more constructive approach and not a swift and easy brush off.
I can only keep my fingers crossed that this route is not one J will take.
Wednesday, 12 May 2010
Well meaning people
Over the last few years, on occasion, I have been consoled with such things as " Oh I don't know how you cope, how do you do it?" Or " well there must be a cure". Or, "poor you.I wonder why it happened?"
These well meaning, but rather innapropriate sayings get on my wick.
How do I cope? Well, like any other mother, when confronted with a child presenting with a disability. You just do.
Yes, many, like me, may have a period of sadness, when we reflect over our pregnancies, deliveries, the early days (did we breastfeed or bottle feed), the immunisations and so on.
But, until there is definitive scientific proof of why autism occurs, and why, it appears, it is on the increase, we can only speculate, and some, like me, lay blame at something that happened.
For me, I have narrowed it down to either of the following :
1) throughout my pregnancy I craved tuna. Canned or fresh, I had to have it daily. I even wrote to John West and told them how much I was spending on their cans and they sent me vouchers as a thank you! - gosh I had way too much time on my hands back then!
2) the delivery, when he got stuck and had to be yanked from me by a ventouse, not breathing.
Now, the tuna issue has arisen since then in the media and by government guidelines for pregnant women.
Back in 2001/2002 there were no such warnings on eating this fish.
When I was pregnant again in 2005/2006, I was informed that pregnant women could eat a maximum of 3 large cans of tuna a week, and not allowed to eat shark or marlin.
This was because of the mercury levels in the fish.
Mercury has been linked to learning difficulties in developing fetuses.
When pregnant recently, this was now down to two small cans of tuna per week.
I avoided tuna in both the last pregnancies because I was linking my huge consumption with J, to his autism.
Pregnant women are advised to not have amalgam fillings removed or replaced due to the mercury risk. Instead they should either wait, or have white fillings put in if needed.
I refused to have the swine flu jab when pregnant because it had a mercury preservative in it.
Now, as our seas are becoming more polluted, and the mercury issue is becoming a problem with fish and is also present in our modern lives, perhaps this may explain the rise in autism.
Or perhaps there is a rise, not in the actual number of children born with autism, rather a rise in the understanding and diagnosing of it. Nowadays, children are not written off as 'trouble makers' or 'thick' as there is so much more understanding of such disabilities as dyslexia, ADHD, Aspergers and autism.
These well meaning, but rather innapropriate sayings get on my wick.
How do I cope? Well, like any other mother, when confronted with a child presenting with a disability. You just do.
Yes, many, like me, may have a period of sadness, when we reflect over our pregnancies, deliveries, the early days (did we breastfeed or bottle feed), the immunisations and so on.
But, until there is definitive scientific proof of why autism occurs, and why, it appears, it is on the increase, we can only speculate, and some, like me, lay blame at something that happened.
For me, I have narrowed it down to either of the following :
1) throughout my pregnancy I craved tuna. Canned or fresh, I had to have it daily. I even wrote to John West and told them how much I was spending on their cans and they sent me vouchers as a thank you! - gosh I had way too much time on my hands back then!
2) the delivery, when he got stuck and had to be yanked from me by a ventouse, not breathing.
Now, the tuna issue has arisen since then in the media and by government guidelines for pregnant women.
Back in 2001/2002 there were no such warnings on eating this fish.
When I was pregnant again in 2005/2006, I was informed that pregnant women could eat a maximum of 3 large cans of tuna a week, and not allowed to eat shark or marlin.
This was because of the mercury levels in the fish.
Mercury has been linked to learning difficulties in developing fetuses.
When pregnant recently, this was now down to two small cans of tuna per week.
I avoided tuna in both the last pregnancies because I was linking my huge consumption with J, to his autism.
Pregnant women are advised to not have amalgam fillings removed or replaced due to the mercury risk. Instead they should either wait, or have white fillings put in if needed.
I refused to have the swine flu jab when pregnant because it had a mercury preservative in it.
Now, as our seas are becoming more polluted, and the mercury issue is becoming a problem with fish and is also present in our modern lives, perhaps this may explain the rise in autism.
Or perhaps there is a rise, not in the actual number of children born with autism, rather a rise in the understanding and diagnosing of it. Nowadays, children are not written off as 'trouble makers' or 'thick' as there is so much more understanding of such disabilities as dyslexia, ADHD, Aspergers and autism.
What I have certainly noticed over the last few years is the plethora of information available and the t.v producers creating more programmes showing the lives of people living with autism.
One day, I hope that the knowledge and understanding of autism is so wide spread, that we never have to experience the rude and ignorant, who feel it is their right to pass judgement or comment on a childs behaviour.
As for the well meaning, who automatically think there is a cure available, when I explain there is'nt, they seem to be a little lost for words and come out with such gems as "oh well, you'll love him just the same". Well, yes of course I will, he is my son and after all, I carried him, birthed him, held him close to me, sang him songs, dreamed of what his future may have held, and just because his life path has not taken the route I once thought, it does'nt mean I love him any less. The love can be tested to its very limits at times, with me feeling completely overwhelmed and unable to cope, but with a hubby to cry to, who can support me in times of me feeling low, I always come through on top and raring to carry on, all guns blazing.
All mothers are special. We create and carry life. We love and nuture our babies. We encourage them to learn and develop. We always worry about them, no matter what age they are. We feel tremendous guilt, sometimes over the silliest things. But, whether we have a child with a disability or not, we love them with a passion and pain that drives deep into our hearts and is at the core of our living.
Tuesday, 11 May 2010
Learning Difficulties And Jaffa Cake Mountain
Well, the other day I had a 'duh' moment.
I have known since 2006 that J has additional learning difficulties as well as the autism, but it was only the other day that I suddenly realised that the reason I always say he is severely autistic is that it is not that, but the learning difficulties, I just didn't click them together.
I always wondered why he finds everyday life so hard. Not understanding instructions, unless they are familiar and simple eg :- " socks on".
Even in his reports from the paediatrician it states he has severe learning difficulties as well, but I just never thought about it. I focused on the autism part.
J is like a dog. I mean that in a kind way however.
He does not understand most of what is asked of him, but gestures and pointing ( by the adult) in the direction of what is expected ( perhaps asking him to get the plate or cup from the table) help him to see what we mean.
Dogs are very similar like this.
When we want them to fetch something, we usually change our tone of voice and gesture wildly towards the object.
The dog will run round, trying to work out what you are asking of them, and when they do succeed in the task they get high praise. Just like my J.
Unfortunately for J, he can easily forget a simple task.
Take the other day.
J has to wear deodorant now, everyday, and I use the word "spray" as I spray him.
He was aware of the canister and where I kept it.
But suddenly he seemed to forget completely what "spray" was. I requested "J spray please" and he handed me a hairbrush. "No, spray" I repeated, in a high sing song tone.
He handed me a photo frame.
"No J, spray, there" ( as I pointed to it) an he got into a flap. This is when I have to intervene as it will just continue with him flapping about and making his upset noises.
It is like simple things(well simple things in my opinion) seem to just 'fall' out of his head.
Then, on the other hand, he can remember things from years ago.
He was at his previous school over two and a half years ago, but even now, without me saying anything, he will point and name his old friends and teachers.
He is also a little magpie.
He watches everything I do and where I put things. I may forget, and then when I come to find it, it has been moved.
I used to find a lot of objects posted behind radiators, and flat things like photos, posted underneath the telly base.
Once, when he was a toddler, he spied I had bought an 18 pack of Petit Filous yoghurts (still his favourite and only yoghurt he'll really eat) and had popped it into the fridge.
The next day, when going to get some out for him, I couldn't find them.
I looked everywhere, but to no avail.
A few days later, when I was getting a toy out for him from his toy cupboard, I found them.
Stashed away with a spoon.
He had hidden them behind toys as well, not in full view at the front of the cupboard.
Now, as a big boy, he still spies the foods he likes when I have bought them.
We have a lock on the kitchen door to stop him helping himself and gorging on food. This was a huge problem, that resulted in him gaining a lot of weight, but also, making himself vomit the food up as he had consumed such a vast quantity.
Whenever the kitchen door is opened he is there, like a shot, from all corners of the house.
Even on the top floor, he can hear the door being unlocked and he is down two flights of stairs like a whippet chasing a rabbit.
He is very quick at stealing the desired food too. Sometimes without me noticing.
At the back of our garden, we have waste land over the fence, not utilised by any property.
I have nicknamed this area 'Jaffa Cake Mountain' as there can be piles and piles of packets of mini Jaffa Cakes there. All courtesy of J.
As I cannot access this space, I have to fashion a 'grabber' device to pick them up.
Several weeks may pass when it is clear, and then suddenly I will look out and there is the mountain again.
When we first moved in to this house, I didn't realise what J was doing with the empty packets.
One day I looked over our garden wall, to my neighbour's garden which we can see into, and oh my God, his garden was a litter bin of packets of crisps, biscuits and chocolate.
I was over the wall like an Olympic athlete, bin bag in hand, and went round picking it all up.
I filled a bin bag half way with the empty packets. Half way!!
Luckily for me ( and not really for the neighbour as he was going through a divorce) he was never at home, so he wasn't aware of the junk food island being created in his back garden.
Thankfully, as I insisted a lock be fitted to the kitchen door, this is now a rare occurrence.
Just keep that door locked, please!
I have known since 2006 that J has additional learning difficulties as well as the autism, but it was only the other day that I suddenly realised that the reason I always say he is severely autistic is that it is not that, but the learning difficulties, I just didn't click them together.
I always wondered why he finds everyday life so hard. Not understanding instructions, unless they are familiar and simple eg :- " socks on".
Even in his reports from the paediatrician it states he has severe learning difficulties as well, but I just never thought about it. I focused on the autism part.
J is like a dog. I mean that in a kind way however.
He does not understand most of what is asked of him, but gestures and pointing ( by the adult) in the direction of what is expected ( perhaps asking him to get the plate or cup from the table) help him to see what we mean.
Dogs are very similar like this.
When we want them to fetch something, we usually change our tone of voice and gesture wildly towards the object.
The dog will run round, trying to work out what you are asking of them, and when they do succeed in the task they get high praise. Just like my J.
Unfortunately for J, he can easily forget a simple task.
Take the other day.
J has to wear deodorant now, everyday, and I use the word "spray" as I spray him.
He was aware of the canister and where I kept it.
But suddenly he seemed to forget completely what "spray" was. I requested "J spray please" and he handed me a hairbrush. "No, spray" I repeated, in a high sing song tone.
He handed me a photo frame.
"No J, spray, there" ( as I pointed to it) an he got into a flap. This is when I have to intervene as it will just continue with him flapping about and making his upset noises.
It is like simple things(well simple things in my opinion) seem to just 'fall' out of his head.
Then, on the other hand, he can remember things from years ago.
He was at his previous school over two and a half years ago, but even now, without me saying anything, he will point and name his old friends and teachers.
He is also a little magpie.
He watches everything I do and where I put things. I may forget, and then when I come to find it, it has been moved.
I used to find a lot of objects posted behind radiators, and flat things like photos, posted underneath the telly base.
Once, when he was a toddler, he spied I had bought an 18 pack of Petit Filous yoghurts (still his favourite and only yoghurt he'll really eat) and had popped it into the fridge.
The next day, when going to get some out for him, I couldn't find them.
I looked everywhere, but to no avail.
A few days later, when I was getting a toy out for him from his toy cupboard, I found them.
Stashed away with a spoon.
He had hidden them behind toys as well, not in full view at the front of the cupboard.
Now, as a big boy, he still spies the foods he likes when I have bought them.
We have a lock on the kitchen door to stop him helping himself and gorging on food. This was a huge problem, that resulted in him gaining a lot of weight, but also, making himself vomit the food up as he had consumed such a vast quantity.
Whenever the kitchen door is opened he is there, like a shot, from all corners of the house.
Even on the top floor, he can hear the door being unlocked and he is down two flights of stairs like a whippet chasing a rabbit.
He is very quick at stealing the desired food too. Sometimes without me noticing.
At the back of our garden, we have waste land over the fence, not utilised by any property.
I have nicknamed this area 'Jaffa Cake Mountain' as there can be piles and piles of packets of mini Jaffa Cakes there. All courtesy of J.
As I cannot access this space, I have to fashion a 'grabber' device to pick them up.
Several weeks may pass when it is clear, and then suddenly I will look out and there is the mountain again.
When we first moved in to this house, I didn't realise what J was doing with the empty packets.
One day I looked over our garden wall, to my neighbour's garden which we can see into, and oh my God, his garden was a litter bin of packets of crisps, biscuits and chocolate.
I was over the wall like an Olympic athlete, bin bag in hand, and went round picking it all up.
I filled a bin bag half way with the empty packets. Half way!!
Luckily for me ( and not really for the neighbour as he was going through a divorce) he was never at home, so he wasn't aware of the junk food island being created in his back garden.
Thankfully, as I insisted a lock be fitted to the kitchen door, this is now a rare occurrence.
Just keep that door locked, please!
Monday, 10 May 2010
My mother in law
J adores her.
He has become very attached to her, but she lives in France.
When she visits, he is by her side,like a faithful dog, following her, looking to her for affection, and trying to initiate fun and games with a look ( as words elude him when requesting most things).
On her last few visits, she has worn a red coat. The material is soft and made to keep the rain out.
My mother in law is a petite woman, of around 5ft 2.
Her coat would be worn by J every minute of her visit, unless it was on her when out and about.
I was in hospital for 8 days in February having a very bad time of trying to have my third baby.
Thankfully, my mother in law, F, came over to help in the house and with the boys.
I had left a 5 page detailed information sheet for the husband, explaining how the house is run and the routines I have established for everyone and everything.
Without F being here, the sheets of info would have been left in a drawer, or expertly cut into strips by J.
As she became main carer and help to J, he became to depend on her, and she finally experienced the life of J, not just a five minute snapshot.
Their bond was formed and sealed and because of that, I now worry less about what would happen to J emotionally if I were to die.
J had terrible separation anxiety from me for many years. In part because I was the only one who understood him and let him be him.
When I finally escaped the maternity hospital, I came back to a calm, warm house, which was clean and tidy too!
J was bouncy and happy, and had not missed me one bit - very good on one hand and a little sad on the other.
I have made an 'action plan' many years ago which details facts about J, should the worst happen to me, but I always doubted he would ever be himself if I were to depart. Now however, I feel content in the knowledge he would cope and continue in his adventures and life of educating others in compassion and unconditional love.
Oh, and back to the red coat....
As J wore it so much, and would have slept in it given the choice, F gave it to him. It fits him perfectly too!
He has become very attached to her, but she lives in France.
When she visits, he is by her side,like a faithful dog, following her, looking to her for affection, and trying to initiate fun and games with a look ( as words elude him when requesting most things).
On her last few visits, she has worn a red coat. The material is soft and made to keep the rain out.
My mother in law is a petite woman, of around 5ft 2.
Her coat would be worn by J every minute of her visit, unless it was on her when out and about.
I was in hospital for 8 days in February having a very bad time of trying to have my third baby.
Thankfully, my mother in law, F, came over to help in the house and with the boys.
I had left a 5 page detailed information sheet for the husband, explaining how the house is run and the routines I have established for everyone and everything.
Without F being here, the sheets of info would have been left in a drawer, or expertly cut into strips by J.
As she became main carer and help to J, he became to depend on her, and she finally experienced the life of J, not just a five minute snapshot.
Their bond was formed and sealed and because of that, I now worry less about what would happen to J emotionally if I were to die.
J had terrible separation anxiety from me for many years. In part because I was the only one who understood him and let him be him.
When I finally escaped the maternity hospital, I came back to a calm, warm house, which was clean and tidy too!
J was bouncy and happy, and had not missed me one bit - very good on one hand and a little sad on the other.
I have made an 'action plan' many years ago which details facts about J, should the worst happen to me, but I always doubted he would ever be himself if I were to depart. Now however, I feel content in the knowledge he would cope and continue in his adventures and life of educating others in compassion and unconditional love.
Oh, and back to the red coat....
As J wore it so much, and would have slept in it given the choice, F gave it to him. It fits him perfectly too!
How much???
I was talking to my middle sons playgroup teacher the other day in regards to J and his needs.
She lent me a catalogue they buy from, which has a whole range of play equipment, toys and accessories for pre-school children.
A small section is dedicated to special needs toys.
But when looking at their prices I was gob smacked.
I am not talking a small mark up from regular toys, but a massive hike, likeable to a molehill versus Mount Everest.
How can companies be allowed to, in my opinion, make tremendous profits from people who need more help and support (both financial and practical)?It is like day light robbery.
One such toy,comprised of four 15x15 inch wooden flat squares, which had a different texture on each panel.
They were nothing special, but as I am now looking for visual aided toys for my youngest son (for which I will explain another time) they looked good.
Glancing my eyes over to the price I took a double take. They cost £299 for four squares.
£75 per square.
How is this possible? Are they weaved with 18k gold thread? Do they have a diamond encrusted border? Are they delivered by Robbie Williams, wearing a cheeky smile but nothing else?
Nope. They are made in China, for a fraction of the charge price, and these companies levy on a mark up of ridiculous percentages.
So, I have asked my uncle, who is a woodwork whizz, handy man and clever brainbox,to create me a similar product, but cheaper and more personalised. "No problem T" he said. I hope that will be the case!
.
She lent me a catalogue they buy from, which has a whole range of play equipment, toys and accessories for pre-school children.
A small section is dedicated to special needs toys.
But when looking at their prices I was gob smacked.
I am not talking a small mark up from regular toys, but a massive hike, likeable to a molehill versus Mount Everest.
How can companies be allowed to, in my opinion, make tremendous profits from people who need more help and support (both financial and practical)?It is like day light robbery.
One such toy,comprised of four 15x15 inch wooden flat squares, which had a different texture on each panel.
They were nothing special, but as I am now looking for visual aided toys for my youngest son (for which I will explain another time) they looked good.
Glancing my eyes over to the price I took a double take. They cost £299 for four squares.
£75 per square.
How is this possible? Are they weaved with 18k gold thread? Do they have a diamond encrusted border? Are they delivered by Robbie Williams, wearing a cheeky smile but nothing else?
Nope. They are made in China, for a fraction of the charge price, and these companies levy on a mark up of ridiculous percentages.
So, I have asked my uncle, who is a woodwork whizz, handy man and clever brainbox,to create me a similar product, but cheaper and more personalised. "No problem T" he said. I hope that will be the case!
.
Thursday, 6 May 2010
Tinted windows
How I would love to have tinted windows to the front of our house.
Net curtains do not stop J pulling them back and revealing to the people outside his full naked glory.
He loves looking out of windows.
But when naked, this causes problems.
If he is not naked, he usually has his hand down his trousers.
He would run around the garden naked if he could. But as he is not 3 years old anymore, this is not such a good thing.
At least he will never have any body issues or hang ups.
Just got to reinforce that we do not go round touching ourselves in public. Perhaps I should tell the young men who walk along with their hands down their very baggy trousers, which sit around their knees, revealing their undergarments?
Net curtains do not stop J pulling them back and revealing to the people outside his full naked glory.
He loves looking out of windows.
But when naked, this causes problems.
If he is not naked, he usually has his hand down his trousers.
He would run around the garden naked if he could. But as he is not 3 years old anymore, this is not such a good thing.
At least he will never have any body issues or hang ups.
Just got to reinforce that we do not go round touching ourselves in public. Perhaps I should tell the young men who walk along with their hands down their very baggy trousers, which sit around their knees, revealing their undergarments?
Wednesday, 5 May 2010
Remembering a few years ago
When we first got a diagnosis of autism, we were given several organisations locally that ran schemes and activities. However, most were for children over the age of 7/8. It made no sense that there was nothing on offer for families with younger children. At this time we were living in Cheshire.
Now, as J approaches his 8th birthday all these opportunities are opening up.
I have just signed him to a scheme called 'Paddleability' which involves canoeing and kayaking. He will, of course, have one to one with a support worker, as J would be away on his oars down the river to freedom, given half the chance!
He goes horseriding within a disabled unit, and he will also be starting trampolining (with luck, but have not been told if it is definate as of yet).
These activities are, in a way, making up for my dreams of him attending Scouts et al.
He could, if I insisted, attend a Scout group, with a support worker, but to be honest, he would not gain anything from it, and it would more than likely be a stress to him.
He needs sporty activities ( in the open air is best) as he loves nature and freedom.
Now, as J approaches his 8th birthday all these opportunities are opening up.
I have just signed him to a scheme called 'Paddleability' which involves canoeing and kayaking. He will, of course, have one to one with a support worker, as J would be away on his oars down the river to freedom, given half the chance!
He goes horseriding within a disabled unit, and he will also be starting trampolining (with luck, but have not been told if it is definate as of yet).
These activities are, in a way, making up for my dreams of him attending Scouts et al.
He could, if I insisted, attend a Scout group, with a support worker, but to be honest, he would not gain anything from it, and it would more than likely be a stress to him.
He needs sporty activities ( in the open air is best) as he loves nature and freedom.
Monday, 3 May 2010
Magnetic drawer
This is a drawing by J. When I point to an image he tells me the name. I am on the left, K (his former babysitter) is in the middle, and he is on the right.
He loves his magnetic drawers as he can erase an image with a quick up and down lever.
He loves his magnetic drawers as he can erase an image with a quick up and down lever.
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