I've just purchased the boy bear. £1 goes to fund autism research.
You can order online or buy in store.
Build a Bear Workshop
Follow this link here
Friday, 29 March 2013
Wednesday, 27 March 2013
My blog is three years old today!
My blog is 3 years old today!
Thank you for all the emails, from around the globe. Our children are special and unique throughout the world!
Here's to another happy year.
Tuesday, 26 March 2013
Child given razor blade to self harm at school
There has been a big debate in the media regarding a young girl being given a sterile Bic razor blade so she could self harm.
She is on the spectrum and this occurred at her school, which caters for 7-19 year olds who have Aspergers or higher functioning autism.
According to the report, the school and her own mother had made an agreement that she would be allowed to self harm.
The incident in debate had her going to the toilet with a sterile Bic razor, whilst two teachers stood outside and checked on her every two minutes. Her wounds were then cleaned and dressed.
This only became news after other staff made a complaint about this action.
J has self harmed before. I have written about it on here. Head banging until he made himself bleed.
He has also used scissors to cut the ends of his fingers, smashed his head through several panes of glass, scratched himself raw, bitten himself, and made himself sick.
We had a psychologist who visited the house, and tried to work through it.
It made no difference.
I've said before that J cannot answer questions, or communicate with words what he is feeling, and the input from the professionals was not relevant or helpful due to the severity of his autism.
His school had better ideas and help. Their ideas did not involve giving him scissors to cut himself, or letting him head bang a wall until he made his head bleed. They intervened and talked him through, calming him, if he was hyper, or distracting him if it was just him wanting the sensory aspect.
J has severe autism and learning difficulties. This young girl has Aspergers, the higher end of the spectrum, where speech and understanding is generally better than J's.
If myself and J's school could work together in stopping his self harm, why wouldn't this girls school? Even if they had tried the talking or distraction approach to no avail, they should have continued on, or tried another no harming method.
I can speak from personal experience of being a self harmer. I started around the age of 9, but to me it wasn't wrong, it just felt good to do. I continued for many many years, but my reason for doing it was from a long term childhood trauma. .
I rarely talk about my self harm as there is such a stigma attached to it, usually by those that have never had a self harm thought in their life. It is like a dirty secret.
So I can see all sides of this debate.
But I just cannot agree that giving a child the tool to self harm can be of any long term benefit.
You can read the article here
She is on the spectrum and this occurred at her school, which caters for 7-19 year olds who have Aspergers or higher functioning autism.
According to the report, the school and her own mother had made an agreement that she would be allowed to self harm.
The incident in debate had her going to the toilet with a sterile Bic razor, whilst two teachers stood outside and checked on her every two minutes. Her wounds were then cleaned and dressed.
This only became news after other staff made a complaint about this action.
J has self harmed before. I have written about it on here. Head banging until he made himself bleed.
He has also used scissors to cut the ends of his fingers, smashed his head through several panes of glass, scratched himself raw, bitten himself, and made himself sick.
We had a psychologist who visited the house, and tried to work through it.
It made no difference.
I've said before that J cannot answer questions, or communicate with words what he is feeling, and the input from the professionals was not relevant or helpful due to the severity of his autism.
His school had better ideas and help. Their ideas did not involve giving him scissors to cut himself, or letting him head bang a wall until he made his head bleed. They intervened and talked him through, calming him, if he was hyper, or distracting him if it was just him wanting the sensory aspect.
J has severe autism and learning difficulties. This young girl has Aspergers, the higher end of the spectrum, where speech and understanding is generally better than J's.
If myself and J's school could work together in stopping his self harm, why wouldn't this girls school? Even if they had tried the talking or distraction approach to no avail, they should have continued on, or tried another no harming method.
I can speak from personal experience of being a self harmer. I started around the age of 9, but to me it wasn't wrong, it just felt good to do. I continued for many many years, but my reason for doing it was from a long term childhood trauma. .
I rarely talk about my self harm as there is such a stigma attached to it, usually by those that have never had a self harm thought in their life. It is like a dirty secret.
So I can see all sides of this debate.
But I just cannot agree that giving a child the tool to self harm can be of any long term benefit.
You can read the article here
Sunday, 24 March 2013
Nystagmus Update - The Baby is now Three!
It has been a long time since my last update of my youngest son, W, who was born with nystagmus.
I first wrote about him here, and then made a few more updates here and finally here.
Today I felt I wanted to do another update, and when I checked the last entry update, it was exactly a year ago - what a coincidence!
W is now 3 years and 1 month old. He is a bundle of love and kisses, mixed with oceans of cheekiness.
There are slightly different milestones set out for children with visual impairments, and W is almost on target for all of them. His speech is the main issue he has.
He has complete understanding of speech, but because he can not focus clearly on a mouth when it is talking, he has never been able to observe mouth shapes for each letter and word. Babies spend a lot of time studying the mouths of the person holding them and talking to them. Because W couldn't do this, he has a lot more work to do. And he really does try. It is frustrating for him as sometimes I cannot understand what he is asking for. But as most parents will attest to, you get to understand their words, when to others it is just mumbled up.
He is putting three to four words together into a sentence, and makes sense, but again the enunciation is not perfect.
W loves to role play, and has his own mini vacuum cleaner. Lately he has wanted to use my vacuum cleaner to 'help' me, and what should take me 10 minutes to do, ends up thirty minutes later with W not letting me do it, and him not really vacuuming up much of anything.
The depth of perception is still a big issue for him. He is cautious when in new environments, and has trouble knowing if a painted line on a pavement is actually a step up or down. He cannot see this as a painted line only. When out and about he does demand independence, but he just cannot have all the freedom he wants, as he could have an accident. Examples being, in the playground he can't judge the distance of the child on the swing, or actually see the swing at all, and so he could walk into a child as they swing heavily towards him.
Another example is crossing the road. Obviously he is only 3, so is not allowed to cross a road on his own, even if he was fully sighted. The depth of perception affects the kerb. He can't judge the distance or the height of the kerb, and easily trips on them. He is fairly compliant with holding hands and following an adults lead though, so that helps immensely.
He was due to start at playgroup recently. He had a few visits there, and seemed happy. On his first official day, he went into absolute heartbreak. My mother went with him, as he adores her. The staff asked her to go into the next room, to show him he has to be at playgroup without a parent/carer. He became so upset and distressed that he made himself sick. The crying was so bad, it is burned into my mother's memory. He was shaking when I arrived, and would not allow either my mum or I to be too far from him.
After a long time of helping W become more confident with people outside of the family, I was not keen for him to backtrack.
I took the decision there and then to delay his start date until September. I am hoping by then he will be more mentally and emotionally ready for it.
I of course understand it is fairly common for children to be upset either when they begin nursery/playgroup, or a few weeks into it when realisation hits them that they are going it alone.
But this upset was far more than a few tears, and then happy placation with some paints and playdough. W's disability is an unknown quantity for me, and I have to feel I am doing my best for him and his wellbeing. I also feel that because he is not as emotionally developed as other children his age, he needs more time. And childhood is so brief, I do not find it a drag having him with me more, I cherish it.
I couldn't imagine what he would be like at this age, when I first discovered he had nystagmus, and I was filled with uncertainty and doubt. All the reading I did on nystagmus, and the videos on YouTube, helped me understand it from a person who has its opinion, but the real learning has been through W.
There is still a poor input of help and resources from my local authority and medical services.
As funding is so basic nowadays, thanks to huge budget cuts, W was even brushed off by the speech therapist at our initial consultation! He more than qualifies for her input, but she said to leave it longer before seeing her again - despite all other specialists stating he needs her help.
I also changed paediatricians, as the previous one and I just did not gel. As I have a lot of experience of special needs, I won't put up with half-hearted specialists, or the ones that talk a lot of good, but don't follow through with their promises. The new paediatrician is much better, more on the ball.
I am guessing he can see to around three metres now. Whether this is clear to him, or hazy and blurry I won't know until he can tell me. He has become interested in the t.v, but he finds it easier to watch programmes on an iPad, as he can hold it close to his face, and he is not having to stand right next to a big screen.
W is perfect. He loves to be in familiar company, and snuggles up to you. He asks for cuddles and kisses. He is kind and helpful. And of course he is a typical toddler. So he has tantrums when he doesn't get what he wants. He gets frustrated when he is not being understood by me. He is exhausting at times. But like any mum will say about their child,- he's mine and he's perfect just the way he is.
I first wrote about him here, and then made a few more updates here and finally here.
Today I felt I wanted to do another update, and when I checked the last entry update, it was exactly a year ago - what a coincidence!
W is now 3 years and 1 month old. He is a bundle of love and kisses, mixed with oceans of cheekiness.
There are slightly different milestones set out for children with visual impairments, and W is almost on target for all of them. His speech is the main issue he has.
He has complete understanding of speech, but because he can not focus clearly on a mouth when it is talking, he has never been able to observe mouth shapes for each letter and word. Babies spend a lot of time studying the mouths of the person holding them and talking to them. Because W couldn't do this, he has a lot more work to do. And he really does try. It is frustrating for him as sometimes I cannot understand what he is asking for. But as most parents will attest to, you get to understand their words, when to others it is just mumbled up.
He is putting three to four words together into a sentence, and makes sense, but again the enunciation is not perfect.
W loves to role play, and has his own mini vacuum cleaner. Lately he has wanted to use my vacuum cleaner to 'help' me, and what should take me 10 minutes to do, ends up thirty minutes later with W not letting me do it, and him not really vacuuming up much of anything.
The depth of perception is still a big issue for him. He is cautious when in new environments, and has trouble knowing if a painted line on a pavement is actually a step up or down. He cannot see this as a painted line only. When out and about he does demand independence, but he just cannot have all the freedom he wants, as he could have an accident. Examples being, in the playground he can't judge the distance of the child on the swing, or actually see the swing at all, and so he could walk into a child as they swing heavily towards him.
Another example is crossing the road. Obviously he is only 3, so is not allowed to cross a road on his own, even if he was fully sighted. The depth of perception affects the kerb. He can't judge the distance or the height of the kerb, and easily trips on them. He is fairly compliant with holding hands and following an adults lead though, so that helps immensely.
He was due to start at playgroup recently. He had a few visits there, and seemed happy. On his first official day, he went into absolute heartbreak. My mother went with him, as he adores her. The staff asked her to go into the next room, to show him he has to be at playgroup without a parent/carer. He became so upset and distressed that he made himself sick. The crying was so bad, it is burned into my mother's memory. He was shaking when I arrived, and would not allow either my mum or I to be too far from him.
After a long time of helping W become more confident with people outside of the family, I was not keen for him to backtrack.
I took the decision there and then to delay his start date until September. I am hoping by then he will be more mentally and emotionally ready for it.
I of course understand it is fairly common for children to be upset either when they begin nursery/playgroup, or a few weeks into it when realisation hits them that they are going it alone.
But this upset was far more than a few tears, and then happy placation with some paints and playdough. W's disability is an unknown quantity for me, and I have to feel I am doing my best for him and his wellbeing. I also feel that because he is not as emotionally developed as other children his age, he needs more time. And childhood is so brief, I do not find it a drag having him with me more, I cherish it.
I couldn't imagine what he would be like at this age, when I first discovered he had nystagmus, and I was filled with uncertainty and doubt. All the reading I did on nystagmus, and the videos on YouTube, helped me understand it from a person who has its opinion, but the real learning has been through W.
There is still a poor input of help and resources from my local authority and medical services.
As funding is so basic nowadays, thanks to huge budget cuts, W was even brushed off by the speech therapist at our initial consultation! He more than qualifies for her input, but she said to leave it longer before seeing her again - despite all other specialists stating he needs her help.
I also changed paediatricians, as the previous one and I just did not gel. As I have a lot of experience of special needs, I won't put up with half-hearted specialists, or the ones that talk a lot of good, but don't follow through with their promises. The new paediatrician is much better, more on the ball.
I am guessing he can see to around three metres now. Whether this is clear to him, or hazy and blurry I won't know until he can tell me. He has become interested in the t.v, but he finds it easier to watch programmes on an iPad, as he can hold it close to his face, and he is not having to stand right next to a big screen.
W is perfect. He loves to be in familiar company, and snuggles up to you. He asks for cuddles and kisses. He is kind and helpful. And of course he is a typical toddler. So he has tantrums when he doesn't get what he wants. He gets frustrated when he is not being understood by me. He is exhausting at times. But like any mum will say about their child,- he's mine and he's perfect just the way he is.
Thursday, 21 March 2013
Unique under One Umbrella
When you've met one person with autism..... you've met one person with autism. What an accurate sentence that sums up the 'umbrella' term of autism.
One area that is an assumption that all autists experience, is changes to routines.
My J has never had a problem with a major change in routine.
We have moved several times around the country, and each time he was happy and content, and as he walked into the new house he would wander around, watch his bed and other items being put into his new bedroom, and just accept he was sleeping there now.
Another classic assumption is Thomas the Tank Engine. The amount of times I've been asked if he loves the programme. According to some of the leading experts I meet out in public, who tell me how they know all about autism, despite not having direct experience of it - J "must love it". In fact J has never shown any interest in the programme. He is not enamoured by it at all. The National Autistic Society even produced a DVD titled 'Transporters'. I received a copy of it a few years ago. Again J had no interest.
Eye contact. J is able, and comfortable to give eye contact. Okay, he does'nt engage in lengthy bouts of it, but that is due to his lack of conversational skills ;whereas neurotypical people tend to look at each other as they talk.
He looks at my face when requesting something, and he studies my face when he is trying to work out my emotion.Again he doesn't understand other peoples feelings, but he still tries to observe me.
Socialising. J does not have appropriate social skills, that is true, but he enjoys company for the majority of the time, and appears happy to be around others - by the way he laughs, giggles, dances, and sings.
Our special children are individual and unique. The 'umbrella' term is useful and informative, but every area does not apply to every autist. That is what makes it so challenging, and very rewarding.
One area that is an assumption that all autists experience, is changes to routines.
My J has never had a problem with a major change in routine.
We have moved several times around the country, and each time he was happy and content, and as he walked into the new house he would wander around, watch his bed and other items being put into his new bedroom, and just accept he was sleeping there now.
Another classic assumption is Thomas the Tank Engine. The amount of times I've been asked if he loves the programme. According to some of the leading experts I meet out in public, who tell me how they know all about autism, despite not having direct experience of it - J "must love it". In fact J has never shown any interest in the programme. He is not enamoured by it at all. The National Autistic Society even produced a DVD titled 'Transporters'. I received a copy of it a few years ago. Again J had no interest.
Eye contact. J is able, and comfortable to give eye contact. Okay, he does'nt engage in lengthy bouts of it, but that is due to his lack of conversational skills ;whereas neurotypical people tend to look at each other as they talk.
He looks at my face when requesting something, and he studies my face when he is trying to work out my emotion.Again he doesn't understand other peoples feelings, but he still tries to observe me.
Socialising. J does not have appropriate social skills, that is true, but he enjoys company for the majority of the time, and appears happy to be around others - by the way he laughs, giggles, dances, and sings.
Our special children are individual and unique. The 'umbrella' term is useful and informative, but every area does not apply to every autist. That is what makes it so challenging, and very rewarding.
Monday, 18 March 2013
Wonky pictures!
Upon visiting my house, you might become aware that every picture, photo, and mirrors that are hanging on the wall, are lopsided. Only just off centre, but enough to be noticable.
For a good year I did'nt click on to why. I would dust them, re-position, and think no more about it, until the next week's dusting.
One day, sitting in the armchair pondering about some or other worry, my eyes focused on the two large pictures hanging on one of the walls. I realised they were both leaning the same way. Looking at the mirror on the other wall, and the photos on the other, they all leaned to one side.
I had a walk around the house, viewing all the other pictures and mirrors, and they too were all off centre, all the same way.
I straightened them up.
The next day they were back to one side.
I straightened them up.
This went on for a while - I do have a lot of other things to think about and running a busy house, alone, it was'nt a major priority.
One day though, I finally saw the culprit.
We were not on a landslip, or in need of under pinning to the house. It was a 10 year old boy. My cheeky J.
I saw him walk past one of them that had been moved back to a central point, and he gently moved it off centre.
So now when people visit my house, I sometimes point out to them the little quirk of my decor.
I don't move them back as often now, and it's almost an accepted way to hang our pictures now!
For a good year I did'nt click on to why. I would dust them, re-position, and think no more about it, until the next week's dusting.
One day, sitting in the armchair pondering about some or other worry, my eyes focused on the two large pictures hanging on one of the walls. I realised they were both leaning the same way. Looking at the mirror on the other wall, and the photos on the other, they all leaned to one side.
I had a walk around the house, viewing all the other pictures and mirrors, and they too were all off centre, all the same way.
I straightened them up.
The next day they were back to one side.
I straightened them up.
This went on for a while - I do have a lot of other things to think about and running a busy house, alone, it was'nt a major priority.
One day though, I finally saw the culprit.
We were not on a landslip, or in need of under pinning to the house. It was a 10 year old boy. My cheeky J.
I saw him walk past one of them that had been moved back to a central point, and he gently moved it off centre.
So now when people visit my house, I sometimes point out to them the little quirk of my decor.
I don't move them back as often now, and it's almost an accepted way to hang our pictures now!
Thursday, 14 March 2013
Vincent Van Gogh
I have held a fascination with Vincent Van Gogh's paintings for many years.
A few of them seem to 'speak' to me, make me understand what he was conveying, how he was feeling, his need to express through the brush.
I have read before about the speculation that he had autism, or the higher functioning Aspergers.
Now I can see it in him. I can see the way my J draws, and it has the same substance to it, as to some of Vincents.
J finds release and calm when he is drawing. He has his own idea of perfection, and it may take him an hour of drawing, erasing, and looking at it from different angles, but when he is happy, he smiles and leaves it lying around - usually when I rush to snap a picture, as he will erase it all just as quick.
J has a very good eye for detail. He has always been extremly visual. When he was eighteen months old he was able to complete a 26 piece alphabet puzzle, the individual piece puzzle, upside down!
I would watch him tip the pieces out, and whichever way the board was facing, he was able to pick up a letter and slot it in the correct space. He sped through it as well.
He is always alert and looking round. He spies everything, and this shows through his art work.
The above two paintings of Vincent's are very similar to how J paints or draws with felt tips. There are also a few magentic drawings too which have similarities, such as the bottom picture.Most of his similar works are created with paint and pen, not on the magnetic drawer.
J's talent will continue to grow, and his skills develop, and I will always provide him the materials to create his masterpieces. His work shows me glimpses into his mind, and the chance to understand his feelings.
A few of them seem to 'speak' to me, make me understand what he was conveying, how he was feeling, his need to express through the brush.
I have read before about the speculation that he had autism, or the higher functioning Aspergers.
Now I can see it in him. I can see the way my J draws, and it has the same substance to it, as to some of Vincents.
J finds release and calm when he is drawing. He has his own idea of perfection, and it may take him an hour of drawing, erasing, and looking at it from different angles, but when he is happy, he smiles and leaves it lying around - usually when I rush to snap a picture, as he will erase it all just as quick.
J has a very good eye for detail. He has always been extremly visual. When he was eighteen months old he was able to complete a 26 piece alphabet puzzle, the individual piece puzzle, upside down!
I would watch him tip the pieces out, and whichever way the board was facing, he was able to pick up a letter and slot it in the correct space. He sped through it as well.
He is always alert and looking round. He spies everything, and this shows through his art work.
The above two paintings of Vincent's are very similar to how J paints or draws with felt tips. There are also a few magentic drawings too which have similarities, such as the bottom picture.Most of his similar works are created with paint and pen, not on the magnetic drawer.
J's talent will continue to grow, and his skills develop, and I will always provide him the materials to create his masterpieces. His work shows me glimpses into his mind, and the chance to understand his feelings.
Tuesday, 12 March 2013
DS doll designed by mother
Just a quick post, with a link attached.
In the link you can read about a mother of a child with DS who has created a doll that has DS features, so her daughter can look at the beauty in the dolls face and see for herself that she is beautiful.
This link will open in a new window. Daily Mail
Monday, 11 March 2013
J's first major stage performance
Saturday night was one of the best nights out I've ever had.
I went to see J perform in a dance routine for our regions Rock Challenge.
Primary schools, both mainstream and special ed can enter the competition, and they have to create a dance set with music, costumes, and lights.
J's school has entered the last few years, but we all felt he was not capable of coping with the enormity of the day, and the pressure of learning a routine.
At Christmas I was approached by a teacher, who asked me if I would let him take part in this one. She felt he was capable, and I agreed.
I was'nt told what they were doing, it was to be a suprise on the night. At home I would see him looking at his reflection and perform little moves. I guessed it was what he was learning for the routine.
The anticipation of the night built up. I was so excited, but also emotional and teary.
We had to watch all the other schools perform first, as his was last on, so the wait was even longer.
When it was time, the music started pumping out, the lights were used for special effect, and my mum and I waited to see him emerge from the wings of the stage.
The venue this was held in was large. The stage was large. There were a sea of family and friends from every school sitting and watching. It was daunting I expect for a lot of the mainstream children, so for J and his school friends to stand up there and perform was amazing.
My mum and I cried throughout. I know many other parents did too. Our special children were up there, doing their best, and making everyone cheer, clap along, smile, and will them on.
J did need some direction at one point, when he had to pick up some chiffon type material that he had to waft around, but once the teacher came on and showed him, he took it up and was left to continue.
The children had no one to one support on the stage. I know the staff were just off in the wings ready to leap on and help if needed, but our children did it all by themselves. They were amazing. Brilliant. Inspiring.
The cheers from every person in there, the parents of children from different schools, were deafening. Our children had done it. My son had done it. That feeling of such awe and pride is still with me now.
The school that won the overall prize was well deserved. Our school won several smaller awards which were deserved. They were amazing.
The staff at J's school had dedicated a lot of their own time to bring this together. A fellow parent made the costumes - they were brilliant costumes, professional looking, and nothing like something I'd create with a tea towel and bed sheet - sewing is not a strong point for me!
I am hoping he will be able to participate with his new school next year. They entered the secondary school Rock Challenge two days before, and won several awards themselves.
If you want to find more out about the Rock Challenge you can click this link - Rock Challenge .
They are a national and international organisation.
I went to see J perform in a dance routine for our regions Rock Challenge.
Primary schools, both mainstream and special ed can enter the competition, and they have to create a dance set with music, costumes, and lights.
J's school has entered the last few years, but we all felt he was not capable of coping with the enormity of the day, and the pressure of learning a routine.
At Christmas I was approached by a teacher, who asked me if I would let him take part in this one. She felt he was capable, and I agreed.
I was'nt told what they were doing, it was to be a suprise on the night. At home I would see him looking at his reflection and perform little moves. I guessed it was what he was learning for the routine.
The anticipation of the night built up. I was so excited, but also emotional and teary.
We had to watch all the other schools perform first, as his was last on, so the wait was even longer.
When it was time, the music started pumping out, the lights were used for special effect, and my mum and I waited to see him emerge from the wings of the stage.
The venue this was held in was large. The stage was large. There were a sea of family and friends from every school sitting and watching. It was daunting I expect for a lot of the mainstream children, so for J and his school friends to stand up there and perform was amazing.
My mum and I cried throughout. I know many other parents did too. Our special children were up there, doing their best, and making everyone cheer, clap along, smile, and will them on.
J did need some direction at one point, when he had to pick up some chiffon type material that he had to waft around, but once the teacher came on and showed him, he took it up and was left to continue.
The children had no one to one support on the stage. I know the staff were just off in the wings ready to leap on and help if needed, but our children did it all by themselves. They were amazing. Brilliant. Inspiring.
The cheers from every person in there, the parents of children from different schools, were deafening. Our children had done it. My son had done it. That feeling of such awe and pride is still with me now.
The school that won the overall prize was well deserved. Our school won several smaller awards which were deserved. They were amazing.
The staff at J's school had dedicated a lot of their own time to bring this together. A fellow parent made the costumes - they were brilliant costumes, professional looking, and nothing like something I'd create with a tea towel and bed sheet - sewing is not a strong point for me!
I am hoping he will be able to participate with his new school next year. They entered the secondary school Rock Challenge two days before, and won several awards themselves.
If you want to find more out about the Rock Challenge you can click this link - Rock Challenge .
They are a national and international organisation.
Wednesday, 6 March 2013
Sunday, 3 March 2013
The drawings of J.
These are a selection of drawings J has created using his magnetic sketcher.
He loves the sketchers as he can perfect his picture, and erase any he does'nt like.
I have to be quick to capture a photo of his work, as he holds no sentimentality to it and is just as quick to delete it all.
It is fascinating being able to glimpse into his world.
We have had many magnetic sketchers over the years, but the Tomy Megasketcher is his favourite.
We have three currently in use in the house.
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