This shows such logic, I find it fantastic.
Can you see what he has done? I hope he was commended for it, after all, it doesn't state his way is not an option. Autistic brains are so clever.
Sunday, 29 December 2013
Autistic Logic Applied to English Homework
I have come across this photo of a child's school work. The child who is a 2nd grader in the US, (Year 3 in Primary school here in the UK), has autism.
This shows such logic, I find it fantastic.
Can you see what he has done? I hope he was commended for it, after all, it doesn't state his way is not an option. Autistic brains are so clever.
This shows such logic, I find it fantastic.
Can you see what he has done? I hope he was commended for it, after all, it doesn't state his way is not an option. Autistic brains are so clever.
Wednesday, 25 December 2013
Monday, 16 December 2013
Design A Christmas Card At School
At J's school they run a yearly Christmas card competition. The children can design their own card, and the winner will be chosen to be made into proper cards, which we can buy.
J spent a very long time on his. I was his mentor and guide, as he didn't want to focus for too long on it. But, with perseverance from me, he brought together all the little bits, and created a cut out tree, with baubles, a star atop, and tinsel, which had wording on each bit which was relevant to the school.
He won!
The design was sent via online card retailer Moonpig, and came back on a glossy card for me to keep.
He also got given chocolates as a prize.
My posts will be short this month as I have a lot going on. I am still available on my email, for which I try and reply to everyone.
Here are two Christmassy themed Autism pictures....
J spent a very long time on his. I was his mentor and guide, as he didn't want to focus for too long on it. But, with perseverance from me, he brought together all the little bits, and created a cut out tree, with baubles, a star atop, and tinsel, which had wording on each bit which was relevant to the school.
He won!
The design was sent via online card retailer Moonpig, and came back on a glossy card for me to keep.
He also got given chocolates as a prize.
My posts will be short this month as I have a lot going on. I am still available on my email, for which I try and reply to everyone.
Here are two Christmassy themed Autism pictures....
Sunday, 1 December 2013
New Glasses, The School Incident, Genetic Tests, and The Man Sacked After 27 Years.
I have been rather snowed under the last few weeks and haven't had the time to devote to writing a blog entry.
So now, on a Sunday night, lunch boxes prepped, clothes laid out for the morning, hair trimmed, nails cut, everyone fed and happy, I can sit down and write.
W, my youngest with Nystagmus, had his six monthly eye check up at the hospital, and he now has to wear glasses all the time (not for sleep obviously). His left eye is quite long sited but the right is fine.
They have started him on a lower lens as they find it better for the child to get accustomed to the glasses and the new perspective. We are going back in two months time for a check up on how he is fairing, and then another pair of glasses will be made with a stronger lens.
I have been astounded by his complete acceptance of the glasses. He had one wobble on the first day and one incident of being silly and hiding them, but he takes them off at bedtime and puts them on upon waking.
I have caught him just gazing at his surroundings in awe. He has exclaimed several times about the new things he is seeing. I find it equally amazing that a new dimension has opened up for him.
J is still loving his new school. Me however - there has been a rather upsetting incident with his teacher. I didn't warm to her right from the start, when she was rude about my surname (yes , I know stupid!), and she just doesn't seem to comprehend that she is a special needs teacher, in a special needs school, working with special needs children. The ludicrous part is that she expects J to be 'normal'. I am not going in to detail about the hurtful comment she made about J, but suffice to say, she is the first person to work with him that doesn't seem to like him.
I have blogged recently about the transport bus escort and her continual praising of him.
He was loved by staff and pupils at his old school.
He is popular with the children at his new school. Heck even the receptionist at the new school welled up when I took in J's Christmas card design for the competition to win the design being made into cards to sell for the school. She commented on how lovely he is, how much work it must have taken him to create the design etc. He brings joy to people, and I'm not just saying that because I'm his mum!
So I find it perplexing that this woman has such a dislike of him. By offending him (indirectly of course, as he doesn't understand) she has offended me, my mother (his Nana), his father. It really has cut deep.
Before all this, I had to notify the school about bruises on his arms. I could tell they were from being squeezed with hands, and fingertip type bruise patterns were plain to see.
I knew immediately that it was the girl I have spoken about before, the one that is a year above him, and for whom they reunited when he started at this school.
This used to happen at the old school and the staff would intervene there and encourage them to do something else.
So this time, I made a call to the school and gave the receptionist a brief synopsis about the situation and I was transferred to the Head Teacher. I mentioned my suspicions about the culprit, and that I had an inkling as to when this was happening (break times), and that I wasn't angry, as I understand. I just wanted them to be aware, intervene if needed, and know that it is not self injurious behavior or abuse from home.
So to have his teacher be so rude (unconnected to the bruising incident) hit me hard. I like to think I am a bubbly and smiley person, and am non judging of others.
I have also been inquiring about the genetic study J was accepted in to, two years ago. We were told it would take around a year for results, but I had heard nothing. Thankfully I was contacted by the local coordinator for our area, and have been informed the samples are now under testing. There was a huge backlog from the amount of people that entered the study.
This study is called the DDD Study and is based in Northampton, England.
We had the standard genetic tests completed on the NHS, and they test for around 1 million disorders.
The DDD Study is testing for around 10 million, and collating information on potentially newly discovered disorders.
I still maintain that any diagnosis does not change anything for us, it just means my other sons will have the choice of genetic counseling for when they decide to start their own family.
On a different note, there is a petition going that is for a man, Daniel White, who has learning difficulties, to be given his job back. The back story to it is, the council department he worked for was taken over, and out of the entire work force he was the only one made redundant.....
He has tended to the gardens in Collett Park, Shepton Mallet, for 27 years, with no sick days. He worked full time, on minimum wages.
Daniel White
His treatment has been disgusting, and all because he has learning difficulties. I suspect the person that wielded the axe had not met him, had not inquired about his work and skills, and so just saw Learning Difficulties, and decided he would have to go. I have read the excuses the new company have given, and they are weak. There are always ways round red tape, always. You just have to be willing to try.
The work Daniel has put in has not being acknowledged, and there has not been any humanity shown.
You can sign the petition here - Petition for Daniel White
Please sign it. Every single signature will make a difference.
So now, on a Sunday night, lunch boxes prepped, clothes laid out for the morning, hair trimmed, nails cut, everyone fed and happy, I can sit down and write.
W, my youngest with Nystagmus, had his six monthly eye check up at the hospital, and he now has to wear glasses all the time (not for sleep obviously). His left eye is quite long sited but the right is fine.
They have started him on a lower lens as they find it better for the child to get accustomed to the glasses and the new perspective. We are going back in two months time for a check up on how he is fairing, and then another pair of glasses will be made with a stronger lens.
I have been astounded by his complete acceptance of the glasses. He had one wobble on the first day and one incident of being silly and hiding them, but he takes them off at bedtime and puts them on upon waking.
I have caught him just gazing at his surroundings in awe. He has exclaimed several times about the new things he is seeing. I find it equally amazing that a new dimension has opened up for him.
J is still loving his new school. Me however - there has been a rather upsetting incident with his teacher. I didn't warm to her right from the start, when she was rude about my surname (yes , I know stupid!), and she just doesn't seem to comprehend that she is a special needs teacher, in a special needs school, working with special needs children. The ludicrous part is that she expects J to be 'normal'. I am not going in to detail about the hurtful comment she made about J, but suffice to say, she is the first person to work with him that doesn't seem to like him.
I have blogged recently about the transport bus escort and her continual praising of him.
He was loved by staff and pupils at his old school.
He is popular with the children at his new school. Heck even the receptionist at the new school welled up when I took in J's Christmas card design for the competition to win the design being made into cards to sell for the school. She commented on how lovely he is, how much work it must have taken him to create the design etc. He brings joy to people, and I'm not just saying that because I'm his mum!
So I find it perplexing that this woman has such a dislike of him. By offending him (indirectly of course, as he doesn't understand) she has offended me, my mother (his Nana), his father. It really has cut deep.
Before all this, I had to notify the school about bruises on his arms. I could tell they were from being squeezed with hands, and fingertip type bruise patterns were plain to see.
I knew immediately that it was the girl I have spoken about before, the one that is a year above him, and for whom they reunited when he started at this school.
This used to happen at the old school and the staff would intervene there and encourage them to do something else.
So this time, I made a call to the school and gave the receptionist a brief synopsis about the situation and I was transferred to the Head Teacher. I mentioned my suspicions about the culprit, and that I had an inkling as to when this was happening (break times), and that I wasn't angry, as I understand. I just wanted them to be aware, intervene if needed, and know that it is not self injurious behavior or abuse from home.
So to have his teacher be so rude (unconnected to the bruising incident) hit me hard. I like to think I am a bubbly and smiley person, and am non judging of others.
I have also been inquiring about the genetic study J was accepted in to, two years ago. We were told it would take around a year for results, but I had heard nothing. Thankfully I was contacted by the local coordinator for our area, and have been informed the samples are now under testing. There was a huge backlog from the amount of people that entered the study.
This study is called the DDD Study and is based in Northampton, England.
We had the standard genetic tests completed on the NHS, and they test for around 1 million disorders.
The DDD Study is testing for around 10 million, and collating information on potentially newly discovered disorders.
I still maintain that any diagnosis does not change anything for us, it just means my other sons will have the choice of genetic counseling for when they decide to start their own family.
On a different note, there is a petition going that is for a man, Daniel White, who has learning difficulties, to be given his job back. The back story to it is, the council department he worked for was taken over, and out of the entire work force he was the only one made redundant.....
He has tended to the gardens in Collett Park, Shepton Mallet, for 27 years, with no sick days. He worked full time, on minimum wages.
His treatment has been disgusting, and all because he has learning difficulties. I suspect the person that wielded the axe had not met him, had not inquired about his work and skills, and so just saw Learning Difficulties, and decided he would have to go. I have read the excuses the new company have given, and they are weak. There are always ways round red tape, always. You just have to be willing to try.
The work Daniel has put in has not being acknowledged, and there has not been any humanity shown.
You can sign the petition here - Petition for Daniel White
Please sign it. Every single signature will make a difference.
Friday, 8 November 2013
The Artist Strikes Again
The little artist has been at it again. This time my wall that descends with the staircase has been used as a canvas.
J has scraped a pattern into the paint, and has revealed the old colour paint underneath.
Not quite sure what he was attempting to draw, or what inspired this, but it is of such a large scale it made me gasp as I opened my bedroom door!
I can only think of a city skyline is something he may have seen at school. I'll never know!
J has scraped a pattern into the paint, and has revealed the old colour paint underneath.
Not quite sure what he was attempting to draw, or what inspired this, but it is of such a large scale it made me gasp as I opened my bedroom door!
I can only think of a city skyline is something he may have seen at school. I'll never know!
Sunday, 3 November 2013
Being a 'Special' Parent
A lady cashier that served me yesterday, asked me how my children were doing. I usually have at least one of them with me when I go to this shop, and she has seen them all at one time or another, and we have little chats as she serves me.
I didn't have any with me on this visit yesterday (thanks Mum for staying at home with them!), and so I mentioned J had been a little hyper due to the half term holiday from school. He needs his routine and the challenge of work to keep his brain calm.
She told me that she doesn't know how mum's like me keep so calm and happy, as she wouldn't be able to cope with a special needs child. She said she has so much admiration for us.
I have heard this before from people. And I've heard other special mum's tell the same story.
We always refute it and say it is just what we were dealt, and we learn to adapt to our new life.
What is true is this ;
I wouldn't be the strong person I am today, the advocator, the challenger, the supporter, and the voice of my son, if I hadn't been given J and his special needs. I would just be another mum that looked at special mums and told them I didn't know how they coped and stayed so strong.
When you are given a special child your world changes. You do what you have to do, for the rights of your child. When your child cannot communicate with words, you become their voice. It is just another facet of being a parent. It is what being a parent is about. We all have our challenges in life, and this is mine.
Saturday, 2 November 2013
Justin Fletcher (Mr Tumble) The Hero of Children's Television
There is a children's entertainer in the UK that I have to write about.
He has provided the voices of many characters, both animated and costumed.
His name is Justin Fletcher.
Justin in his day to day clothes.
Over the last 15 years or so, he has either acted as himself, as various acts, or provided voice overs for costumed actors and animated shows.
He began working on the CITV show, Fun Song Factory, with Dave Benson Philips, and in my opinion this was the hey day for FSF, as it wasn't as cheesy as it's successor was, which had stage school youngsters whaling through 'pop' songs. Dave Benson Philips was a great presenter and actor too.
A very young looking Justin in the Fun Song Factory.
The BBC1 show, The Tweenies, had Justin voicing the characters of Jake and Doodles.
His most recent voice over he has done is for an animation series called Olly the Little White Van, and I can detect tones of his voice he used for Jake.
Tikkabilla and the spin off, Higgeldy House, were fantastic. He and Sarah Jane were a great duo, and even now, 10 years on, it is still a very much loved programme in our house, loved by J, and now by W, my youngest son aged three. J is quite calm when I put one of these on for him to watch.
The Tikkabilla Presenters
He then became 'Mr Tumble'. Oh Mr Tumble, what a fabulous creation. Loved by children, and parents too.
Mr Tumble
Such a basic premise, but one that enthrals and educates young children, with no patronising.
Mr Tumble has brought a whole new world of special needs to the fore.
Justin learnt Makaton - sign language - and uses it throughout his show, Something Special.
As the show progressed, and the audience of fans increased, Justin introduced more characters, all played by himself, and all related in some way to Mr Tumble. Granddad Tumble, Fisherman Tumble, Aunt Polly, Baby Tumble, Lord Tumble, and my favourite, Cliff Tumble, which is based on Cliff Richard, the legendary music man for over 50 years - Justin really plays him up, much to my amusement.
Bright colours and Justin's natural warmth make it a winner. The children that appear alongside him all have a disability, and it educates the children watching the show, that our world is diverse, and that we can all learn together.
Gigglebiz and Justin's House followed. He got to show his talents of acting many different characters, male and female in Gigglebiz, and it was aimed at slightly older children, as it had lots of silly humour.
Justin's House had a live audience of youngsters, and was very slapstick/pantomime based, which children love - adults too!
Gigglebiz
Animated series' he has voiced recently are Timmy Time (BBC) and as mentioned before, Olly the Little White Van, and Shaun the Sheep (BBC).
If you have a child with learning disabilities I highly recommend the series Something Special (Mr Tumble) and you can watch episodes on YouTube, as well as buy DVD's from Amazon, eBay, and the BBC online shop, to name a few.
This is a link to the programme Something Special on YouTube.
As for the marvellous Justin Fletcher, he was awarded an MBE from the Queen for services to Children's Broadcasting and the Voluntary Sector, in 2008, after a petition was started online. The then Prime Minister, Gordon Brown, had an online petition page where people could choose a subject of their own, and if it gathered over a certain amount of signatories, it would be motioned. So people power worked. Justin deserves his MBE. Even if you do not find you like his programmes, you cannot deny he has a flare and talent for communicating with special children.
Receiving an MBE from the Queen in 2008
Justin Fletcher, you are a hero to so many mums like me. You treat our special children with kindness and respect. Your characters and shows are wonderful to watch, and unlike a lot of shows aimed at children, you don't rely on recorded laughter tracks, screeching stage school teenagers over acting, or cheesy, schmaltzy, moral stories.
Thank You, from myself and my children!
He has provided the voices of many characters, both animated and costumed.
His name is Justin Fletcher.
Justin in his day to day clothes.
Over the last 15 years or so, he has either acted as himself, as various acts, or provided voice overs for costumed actors and animated shows.
He began working on the CITV show, Fun Song Factory, with Dave Benson Philips, and in my opinion this was the hey day for FSF, as it wasn't as cheesy as it's successor was, which had stage school youngsters whaling through 'pop' songs. Dave Benson Philips was a great presenter and actor too.
A very young looking Justin in the Fun Song Factory.
The BBC1 show, The Tweenies, had Justin voicing the characters of Jake and Doodles.
His most recent voice over he has done is for an animation series called Olly the Little White Van, and I can detect tones of his voice he used for Jake.
Tikkabilla and the spin off, Higgeldy House, were fantastic. He and Sarah Jane were a great duo, and even now, 10 years on, it is still a very much loved programme in our house, loved by J, and now by W, my youngest son aged three. J is quite calm when I put one of these on for him to watch.
The Tikkabilla Presenters
He then became 'Mr Tumble'. Oh Mr Tumble, what a fabulous creation. Loved by children, and parents too.
Mr Tumble
Such a basic premise, but one that enthrals and educates young children, with no patronising.
Mr Tumble has brought a whole new world of special needs to the fore.
Justin learnt Makaton - sign language - and uses it throughout his show, Something Special.
As the show progressed, and the audience of fans increased, Justin introduced more characters, all played by himself, and all related in some way to Mr Tumble. Granddad Tumble, Fisherman Tumble, Aunt Polly, Baby Tumble, Lord Tumble, and my favourite, Cliff Tumble, which is based on Cliff Richard, the legendary music man for over 50 years - Justin really plays him up, much to my amusement.
Bright colours and Justin's natural warmth make it a winner. The children that appear alongside him all have a disability, and it educates the children watching the show, that our world is diverse, and that we can all learn together.
Gigglebiz and Justin's House followed. He got to show his talents of acting many different characters, male and female in Gigglebiz, and it was aimed at slightly older children, as it had lots of silly humour.
Justin's House had a live audience of youngsters, and was very slapstick/pantomime based, which children love - adults too!
Gigglebiz
Animated series' he has voiced recently are Timmy Time (BBC) and as mentioned before, Olly the Little White Van, and Shaun the Sheep (BBC).
If you have a child with learning disabilities I highly recommend the series Something Special (Mr Tumble) and you can watch episodes on YouTube, as well as buy DVD's from Amazon, eBay, and the BBC online shop, to name a few.
This is a link to the programme Something Special on YouTube.
As for the marvellous Justin Fletcher, he was awarded an MBE from the Queen for services to Children's Broadcasting and the Voluntary Sector, in 2008, after a petition was started online. The then Prime Minister, Gordon Brown, had an online petition page where people could choose a subject of their own, and if it gathered over a certain amount of signatories, it would be motioned. So people power worked. Justin deserves his MBE. Even if you do not find you like his programmes, you cannot deny he has a flare and talent for communicating with special children.
Receiving an MBE from the Queen in 2008
Justin Fletcher, you are a hero to so many mums like me. You treat our special children with kindness and respect. Your characters and shows are wonderful to watch, and unlike a lot of shows aimed at children, you don't rely on recorded laughter tracks, screeching stage school teenagers over acting, or cheesy, schmaltzy, moral stories.
Thank You, from myself and my children!
Thursday, 31 October 2013
My Review of Scope's Education and Learning Together Toolkit
I have been asked by Scope, the UK based charity for children with disabilities and their families, to review their website section, which is called - ‘Scope’s Learning Together toolkit’, and which provides information on the integration of children with disabilities into mainstream settings, and then give my personal feedback about it.
I firstly will say I think it is very easy to read. The layout is simple, but effective.
The paragraphs are concise, but content rich.
As I have two children with (different) disabilities, I am pleased to see that my youngest son W, who has Nystagmus ( the involuntary eye rotation and vision impairment), is also included within the education section, and how parents and school staff can make the school environment a safe, happy, and effective learning place for a child with vision impairment or loss.
Autism is featured more and more nowadays, (from when I first heard the word back in 2004), and Scope have created a very reader friendly information section on this. As autism is being diagnosed more and more, mainstream schools do have to develop their attitude, support, and provisions, as there are children with autism that can attend a mainstream setting, but will still need that bit more help and understanding.
My cousin has just started working as a primary school teacher, after gaining a First Class Honours BA in Primary Education, and she has two children in her class that have been noted as having extra needs, but there is no teaching assistant to help her. So she has a class of 30 children, and has to provide extra support and help to these children, and also teach the other 28 alongside. The Head of the school decided to remove all teaching assistants as a cost cutting exercise. So every child that attends a school with the same provision in place, will suffer. Money over a child's well being and education has reared it's head again, and will not benefit anyone apart from the Head and her budget book.
Scope gives practical advice for parents and education providers about this complex issue, and it could benefit families that are in a quandary about education provisions.
As Scope is for all children with any disability, they have to be quite broad in their information and advice.
If Scope talk about a specific document or form, they provide a link within that paragraph. This means if you want to continue reading through the website, but don't want to forget or lose where this information is, you can click it, it opens in a new page, and you can then go to it as and when you want, whilst moving on through their website.
I am asked to give any suggestions I may have.
The main one I adhere to, which applies to all children, whether disabled or abled, and beginning a new experience of education settings, is to listen to your child. Observe them. See how they respond. Take your time with decision making over education. Allow them time to adjust.
Let them have a good transition time frame. Don't rush it. You must feel confident in the care provided. Your child will show you if they are happy or not.
It is fantastic to read about what to do, how to go about it, but a parent really is the best advocate for their child, as they know and understand them wholly.
The information available on Scope’s Learning Together toolkit will empower parents and carers, who may feel in the dark about the education provisions, or parents that want that bit of back up that bolsters their opinion on what they want their child to gain from school.
So perhaps a little bit about trusting yourself and your feelings, when it comes to your child with a disability, would be valuable.
If you want to have a look for yourself, this is the link I have discussed - Scope's Education and Learning Together Toolkit
I would have benefitted immensely from the Scope website and their Education and Learning together toolkit 10 years ago. The help and advice was patchy and very sparse back then. I empowered myself by searching for information, having publications sent from the US for me to read, and by believing in my ability to recognise what was right for my Boy.
What Scope have provided is fabulous. It is almost a 'one stop shop' for help and advice.
I hope their address is given out more readily to parents beginning on the road of a special needs child, as it could be just the thing for them to have to hand, and to see the future more clearly.
I firstly will say I think it is very easy to read. The layout is simple, but effective.
The paragraphs are concise, but content rich.
As I have two children with (different) disabilities, I am pleased to see that my youngest son W, who has Nystagmus ( the involuntary eye rotation and vision impairment), is also included within the education section, and how parents and school staff can make the school environment a safe, happy, and effective learning place for a child with vision impairment or loss.
Autism is featured more and more nowadays, (from when I first heard the word back in 2004), and Scope have created a very reader friendly information section on this. As autism is being diagnosed more and more, mainstream schools do have to develop their attitude, support, and provisions, as there are children with autism that can attend a mainstream setting, but will still need that bit more help and understanding.
My cousin has just started working as a primary school teacher, after gaining a First Class Honours BA in Primary Education, and she has two children in her class that have been noted as having extra needs, but there is no teaching assistant to help her. So she has a class of 30 children, and has to provide extra support and help to these children, and also teach the other 28 alongside. The Head of the school decided to remove all teaching assistants as a cost cutting exercise. So every child that attends a school with the same provision in place, will suffer. Money over a child's well being and education has reared it's head again, and will not benefit anyone apart from the Head and her budget book.
Scope gives practical advice for parents and education providers about this complex issue, and it could benefit families that are in a quandary about education provisions.
As Scope is for all children with any disability, they have to be quite broad in their information and advice.
If Scope talk about a specific document or form, they provide a link within that paragraph. This means if you want to continue reading through the website, but don't want to forget or lose where this information is, you can click it, it opens in a new page, and you can then go to it as and when you want, whilst moving on through their website.
I am asked to give any suggestions I may have.
The main one I adhere to, which applies to all children, whether disabled or abled, and beginning a new experience of education settings, is to listen to your child. Observe them. See how they respond. Take your time with decision making over education. Allow them time to adjust.
Let them have a good transition time frame. Don't rush it. You must feel confident in the care provided. Your child will show you if they are happy or not.
It is fantastic to read about what to do, how to go about it, but a parent really is the best advocate for their child, as they know and understand them wholly.
The information available on Scope’s Learning Together toolkit will empower parents and carers, who may feel in the dark about the education provisions, or parents that want that bit of back up that bolsters their opinion on what they want their child to gain from school.
So perhaps a little bit about trusting yourself and your feelings, when it comes to your child with a disability, would be valuable.
If you want to have a look for yourself, this is the link I have discussed - Scope's Education and Learning Together Toolkit
I would have benefitted immensely from the Scope website and their Education and Learning together toolkit 10 years ago. The help and advice was patchy and very sparse back then. I empowered myself by searching for information, having publications sent from the US for me to read, and by believing in my ability to recognise what was right for my Boy.
What Scope have provided is fabulous. It is almost a 'one stop shop' for help and advice.
I hope their address is given out more readily to parents beginning on the road of a special needs child, as it could be just the thing for them to have to hand, and to see the future more clearly.
The Flu Injection Appointment
This morning was flu injection time.
I'd booked our appointments a few weeks ago, and had a plan in place, and my mum in attendance to help with what I predicted to be, a dramatic scene of screaming and panic from J.
J remember is the boy that panics if I drive near the doctors surgery, and says "goodbye doctor" over and over again.
I had made the appointment time as early morning, to get it out the way!
Upon driving into the car park, J got a little agitated, but he exited the car with no coercion needed.
Booking us in on the electronic machine, J went and sat down.
He was tapping his feet a little too noisily, but there was only one other person in the waiting room, and so I didn't make a fuss about it.
When we were called in to the nurse's room, J followed, with no problem.
I asked to go first, which turned out to be a great thing to do.
J watched as I took my cardigan off one arm, and rolled my sleeve up. I stood for the injection, and it was over in seconds.
J then automatically took his coat off, rolled his sleeve up, and sat in the chair.
The nurse did the jab, he made a small noise, more of an "oooo", but no screaming.
And that was it!
He put his coat on, and then watched as his youngest brother had a nasal flu spray squirted up his nostrils - this is the method they use for all two to three years olds in the UK.
We all walked out calmly, and my mum and I were in a small shock at the complete lack of anticipated drama.
What an amazing difference.
He really is growing up and maturing.
I've said before that he learns through trauma, and even if it is a good thing, if he hasn't done it before, he usually panics, but as soon as he experiences it, and sees for himself it is okay, he accepts it and doesn't stress any further.
I'm feeling incredibly pleased that it turned out so well. Over the moon in fact. Not a full moon though, as we all know full moons affect special children quite effectively, and plenty of neurotypical children and adults too. I'm not going a full round with a full moon!
I'd booked our appointments a few weeks ago, and had a plan in place, and my mum in attendance to help with what I predicted to be, a dramatic scene of screaming and panic from J.
J remember is the boy that panics if I drive near the doctors surgery, and says "goodbye doctor" over and over again.
I had made the appointment time as early morning, to get it out the way!
Upon driving into the car park, J got a little agitated, but he exited the car with no coercion needed.
Booking us in on the electronic machine, J went and sat down.
He was tapping his feet a little too noisily, but there was only one other person in the waiting room, and so I didn't make a fuss about it.
When we were called in to the nurse's room, J followed, with no problem.
I asked to go first, which turned out to be a great thing to do.
J watched as I took my cardigan off one arm, and rolled my sleeve up. I stood for the injection, and it was over in seconds.
J then automatically took his coat off, rolled his sleeve up, and sat in the chair.
The nurse did the jab, he made a small noise, more of an "oooo", but no screaming.
And that was it!
He put his coat on, and then watched as his youngest brother had a nasal flu spray squirted up his nostrils - this is the method they use for all two to three years olds in the UK.
We all walked out calmly, and my mum and I were in a small shock at the complete lack of anticipated drama.
What an amazing difference.
He really is growing up and maturing.
I've said before that he learns through trauma, and even if it is a good thing, if he hasn't done it before, he usually panics, but as soon as he experiences it, and sees for himself it is okay, he accepts it and doesn't stress any further.
I'm feeling incredibly pleased that it turned out so well. Over the moon in fact. Not a full moon though, as we all know full moons affect special children quite effectively, and plenty of neurotypical children and adults too. I'm not going a full round with a full moon!
Wednesday, 9 October 2013
A Lovely Comment
J's school bus escort said something really lovely this afternoon when he was dropped off.
She said he is such a lovely young man, always chirpy and happy, singing away (in his mumbled word way, but with tune) and is the most well behaved out of all of the others on the bus.
I felt incredibly proud of him when she told me.
I know she's not the first that has spoken about their fondness of him, and his cheeky behaviour, but sometimes someone new, telling you how much they think of your special child, well, it makes me want to shout it out to all those negative people that disparage the mentally disabled. My son has a beautiful character, and despite his severe communication and cognitive disabilities, he has the personality to make people love him.
He is amazing!
She said he is such a lovely young man, always chirpy and happy, singing away (in his mumbled word way, but with tune) and is the most well behaved out of all of the others on the bus.
I felt incredibly proud of him when she told me.
I know she's not the first that has spoken about their fondness of him, and his cheeky behaviour, but sometimes someone new, telling you how much they think of your special child, well, it makes me want to shout it out to all those negative people that disparage the mentally disabled. My son has a beautiful character, and despite his severe communication and cognitive disabilities, he has the personality to make people love him.
He is amazing!
Friday, 4 October 2013
My Peugeot Car and the Faulty Battery Saga
I have had two weeks of incompetence and deniability from two major companies.
My Peugeot vehicle, one morning, refused to start. I knew the battery was at fault - flat.
I called the RAC out and sure enough all that was needed was a jump start of the battery.
The chap that visited, advised me to run my car regularly, as batteries can stall with weeks of non use. My car however is used every day, so this seemed illogical.
Four days went by, with the car starting fine, and then the fifth day, nothing. "Click click" was all the car emitted as I turned the ignition key. The battery was flat again.
Another RAC man came out, and mentioned the non use being a cause, but I explained it is used daily, and not just short little trips - I cover a fair few miles!
He said there must be something draining the battery when the engine is off.
I have no modifications or adaptations on the car, and I do not leave lights or similar, on.
I then thought it must be the radio unit. A few months before, my radio had been disconnected by Peugeot, as it had fused when I was driving one day, and smoke poured out of the air vents.
They wanted £350 for a new unit! I declined. Far too expensive for me to outlay on.
So I requested they disconnect it. According to their service sheet, they did. The unit stayed in the car though.
So, I booked the car in to my local Peugeot main dealer, the same place I got the car from last year.
After 24 hours they told me that it had to be a faulty battery that would need replacing. However, the warranty does not cover batteries. I told them I thought it was the radio unit. There was no other electrical output that could be the cause, as they claimed they had checked.
Despite this being 2013, the man on the service department desk, looked at me as if I was a moron from the planet Moron1. He told me, in that wonderfully condescending tone that some people in customer focused jobs employ, ( eg doctor's receptionists), that it could not be that.
I called Motability, who I got the car through, as J is registered severally disabled, and they said they would not pay for a battery, as it should be covered by the warranty.
I was stuck between these two companies, both claiming the other was liable.
This car is under one year old. Surely there should be guidelines for cars, where a standard expectation of reliability of parts is covered up to a year. But it seems the small print of the warranty, gave Peugeot a get out of jail free card, and they were legally able to shrug their shoulders and say hard luck.
I raised a complaint with the main head quarters of Peugeot UK, and received an appalling email from their Customer Service Manager, whose name I shall not put here.
The email had spelling mistakes, and poor grammar. It consisted of three tiny paragraphs, with a sentence in each. The email from this man basically said "tough", the warranty doesn't cover batteries.
So, I went back to Motability. They said they'd try and raise a complaint.
Meanwhile, I received an email from my local Peugeot dealer, asking me if I was happy with their service when I had taken my car in! Anyone that knows me, or who has followed my blog from the start will know this - I had to send a reply.
Two days later I received a call from the manager of the service department at my local dealer. He had been passed my email response to their customer satisfaction email.
He wanted to get to the bottom of this problem, and said he would put a new battery in, free of charge, and would take up the battle with Peugeot warranties and Motability - in effect his dealership would cover the cost, despite it not being them personally that should do - Peugeot UK should.
So in the car goes for a battery change. An hour later I am told that the car is still emitting very high electrical output when the engine is off. They checked the same model as mine, to see if it was just a quirk with them alone, but no, it was just my car. I again said I thought it was the radio unit. Again I was told it couldn't be.
They decided to keep my car and give me a courtesy car.
But, just over an hour later I received a call from Motability, who said they had been contacted by my main dealer, and the fault had been found. You've already guessed what it is haven't you?!
The radio unit.
It had not been disconnected! It had been left to run, even when the ignition was off. As I had no power to it on the main display, it was not anything I did or could have prevented. It was their mechanic originally that did not disconnect it properly, after the fuse problem.
I told the chap to disconnect it properly, as I was not paying £350 for a new unit!
I collected my car later that day, and it was fine.
I did have to speak to Mr Personality on the service desk again, and the prickles he was emanating from his aura was funny. He just couldn't look me in the eye.
I am never rude, or aggressive, ever.
I do however make my point clear when service is less than expected.
With him, as he seemed to have a dislike of women having an iota of knowledge about their vehicle, I smiled sweetly, and hoped he'd now upgrade me from Moron1.
I would have loved to have done the 'told you so' dance. The one Grace does in NBC's fab 1998-2005 show, Will and Grace. You can see it here or here . Both link to YouTube.
But I don't think it would have gone down too well!
I thought that was the end of it. I was happy the problem was fixed.
But I received a call yesterday from Motability. As a good will gesture for all the hassle I have been put through, through no fault of my own, they have agreed to pay for a new radio unit to be put in my car. I would call that an amicable settlement.
I always maintain that being polite is the best way to handle disagreements with companies.
Not polite in the manner of being self deprecating and apologetic, but understanding that people can make mistakes, it is human nature, and that a person in a call centre is merely the go between, and should not be abused verbally for your frustrations and anger.
And I strongly believe that if you complain about service, you should also praise it when it goes right.
I sent a thank you email to the service manager at my main dealer, and also thanked profusely the Motability chap that called me with the new radio news.
So I have a new radio unit, fully functioning. A battery that shouldn't go flat, hopefully.
And all by me keeping my cool, and sticking to my morals of not being shunted aside, no matter what excuses I am given.
My Peugeot vehicle, one morning, refused to start. I knew the battery was at fault - flat.
I called the RAC out and sure enough all that was needed was a jump start of the battery.
The chap that visited, advised me to run my car regularly, as batteries can stall with weeks of non use. My car however is used every day, so this seemed illogical.
Four days went by, with the car starting fine, and then the fifth day, nothing. "Click click" was all the car emitted as I turned the ignition key. The battery was flat again.
Another RAC man came out, and mentioned the non use being a cause, but I explained it is used daily, and not just short little trips - I cover a fair few miles!
He said there must be something draining the battery when the engine is off.
I have no modifications or adaptations on the car, and I do not leave lights or similar, on.
I then thought it must be the radio unit. A few months before, my radio had been disconnected by Peugeot, as it had fused when I was driving one day, and smoke poured out of the air vents.
They wanted £350 for a new unit! I declined. Far too expensive for me to outlay on.
So I requested they disconnect it. According to their service sheet, they did. The unit stayed in the car though.
So, I booked the car in to my local Peugeot main dealer, the same place I got the car from last year.
After 24 hours they told me that it had to be a faulty battery that would need replacing. However, the warranty does not cover batteries. I told them I thought it was the radio unit. There was no other electrical output that could be the cause, as they claimed they had checked.
Despite this being 2013, the man on the service department desk, looked at me as if I was a moron from the planet Moron1. He told me, in that wonderfully condescending tone that some people in customer focused jobs employ, ( eg doctor's receptionists), that it could not be that.
I called Motability, who I got the car through, as J is registered severally disabled, and they said they would not pay for a battery, as it should be covered by the warranty.
I was stuck between these two companies, both claiming the other was liable.
This car is under one year old. Surely there should be guidelines for cars, where a standard expectation of reliability of parts is covered up to a year. But it seems the small print of the warranty, gave Peugeot a get out of jail free card, and they were legally able to shrug their shoulders and say hard luck.
I raised a complaint with the main head quarters of Peugeot UK, and received an appalling email from their Customer Service Manager, whose name I shall not put here.
The email had spelling mistakes, and poor grammar. It consisted of three tiny paragraphs, with a sentence in each. The email from this man basically said "tough", the warranty doesn't cover batteries.
So, I went back to Motability. They said they'd try and raise a complaint.
Meanwhile, I received an email from my local Peugeot dealer, asking me if I was happy with their service when I had taken my car in! Anyone that knows me, or who has followed my blog from the start will know this - I had to send a reply.
Two days later I received a call from the manager of the service department at my local dealer. He had been passed my email response to their customer satisfaction email.
He wanted to get to the bottom of this problem, and said he would put a new battery in, free of charge, and would take up the battle with Peugeot warranties and Motability - in effect his dealership would cover the cost, despite it not being them personally that should do - Peugeot UK should.
So in the car goes for a battery change. An hour later I am told that the car is still emitting very high electrical output when the engine is off. They checked the same model as mine, to see if it was just a quirk with them alone, but no, it was just my car. I again said I thought it was the radio unit. Again I was told it couldn't be.
They decided to keep my car and give me a courtesy car.
But, just over an hour later I received a call from Motability, who said they had been contacted by my main dealer, and the fault had been found. You've already guessed what it is haven't you?!
The radio unit.
It had not been disconnected! It had been left to run, even when the ignition was off. As I had no power to it on the main display, it was not anything I did or could have prevented. It was their mechanic originally that did not disconnect it properly, after the fuse problem.
I told the chap to disconnect it properly, as I was not paying £350 for a new unit!
I collected my car later that day, and it was fine.
I did have to speak to Mr Personality on the service desk again, and the prickles he was emanating from his aura was funny. He just couldn't look me in the eye.
I am never rude, or aggressive, ever.
I do however make my point clear when service is less than expected.
With him, as he seemed to have a dislike of women having an iota of knowledge about their vehicle, I smiled sweetly, and hoped he'd now upgrade me from Moron1.
I would have loved to have done the 'told you so' dance. The one Grace does in NBC's fab 1998-2005 show, Will and Grace. You can see it here or here . Both link to YouTube.
But I don't think it would have gone down too well!
I thought that was the end of it. I was happy the problem was fixed.
But I received a call yesterday from Motability. As a good will gesture for all the hassle I have been put through, through no fault of my own, they have agreed to pay for a new radio unit to be put in my car. I would call that an amicable settlement.
I always maintain that being polite is the best way to handle disagreements with companies.
Not polite in the manner of being self deprecating and apologetic, but understanding that people can make mistakes, it is human nature, and that a person in a call centre is merely the go between, and should not be abused verbally for your frustrations and anger.
And I strongly believe that if you complain about service, you should also praise it when it goes right.
I sent a thank you email to the service manager at my main dealer, and also thanked profusely the Motability chap that called me with the new radio news.
So I have a new radio unit, fully functioning. A battery that shouldn't go flat, hopefully.
And all by me keeping my cool, and sticking to my morals of not being shunted aside, no matter what excuses I am given.
Tuesday, 1 October 2013
The Love of Dogs
I have linked this post to a video of a young boy who has Down's Syndrome, and a beautiful and gentle yellow Labrador.
The Labrador is trying to make friends with the boy, and is determined to do so, but never pushes boundaries, or becomes overly keen or excitable.
It was heart warming to watch, especially as I love Labradors - I have two yellow ones myself.
You can watch the video Here. It is on YouTube under the title ' Loving dog takes care of little boy with Down's Syndrome'
The Labrador is trying to make friends with the boy, and is determined to do so, but never pushes boundaries, or becomes overly keen or excitable.
It was heart warming to watch, especially as I love Labradors - I have two yellow ones myself.
You can watch the video Here. It is on YouTube under the title ' Loving dog takes care of little boy with Down's Syndrome'
Wednesday, 25 September 2013
The Surprise Missing Canine Tooth
The Tooth Fairy will be paying a visit tonight. Not that J is remotely bothered or aware of the tradition.
I hadn't even realised he had lost another tooth - bad mummy.
My middle son O, found it on the floor by my late Grandfathers old leather arm chair.
As J was not back from school, we did do a check on the dogs, but I knew it couldn't be from them as it was a small tooth and looked human.
When J returned, I asked him to show me his teeth, and he duly obliged. I shone a torch in his mouth, and yes, there was a small gap, with a new tooth already well on its way up.
It is the first of the canines, and I had only checked a few weeks before, for the age of when children begin to lose those ones.
As with most things in J's life, he went through trauma during the first two baby teeth loss. He let out blood curdling screams and had the panicked panting and shock, when he was losing his first tooth.
He refused to eat with the tooth during that time, and he delayed its exit for quite a while.
Finally the first tooth, and the second tooth were lost only a few days later, and occurred at school, during assembly. Again he became highly distressed, and was removed by a support staff, to help calm him. His eagle eyed teacher spotted a tooth on the floor by his chair, and quickly assessed it was from J, and that was the reason for his outburst.
There is an old blog post here, from December 2010, where he had lost his seventh tooth.
Since then, he has lost all of his eight front teeth, four top and four bottom, and he never made any fuss, never became distressed, and never even attempted to show me.
This tooth is the first I have managed to keep. All the other teeth, he either threw away - apart from the assembly ones - or flushed them down the toilet. I would only be aware that another tooth had fallen out, when I saw the gap.
He has amazingly strong teeth, white, and totally free from any decay. I look upon that as a blessing, as it would be horrendous trying to get him to sit still for an injection in his gum, let alone actually sit in a dentists chair, lie back, and open his mouth. So far, he has progressed to allowing the dentist to shine her light into his mouth, use the little mirror, and paste on some fluoride gel. This alone has taken two years to build up to, and he still won't sit in the chair ; the dentist goes with the flow and his needs, and lets him stand by the door, a hand on the handle, ready to leave as quick as possible!
We are lucky that his dentist has a lot of autistic children on her books, and her manner and approach is exactly what J needs.
I can now be on extra alert for the next canine to become wobbly, and maybe I will actually be there to catch it. Maybe, but probably not!
J's canine tooth that was found on the floor
I hadn't even realised he had lost another tooth - bad mummy.
My middle son O, found it on the floor by my late Grandfathers old leather arm chair.
As J was not back from school, we did do a check on the dogs, but I knew it couldn't be from them as it was a small tooth and looked human.
When J returned, I asked him to show me his teeth, and he duly obliged. I shone a torch in his mouth, and yes, there was a small gap, with a new tooth already well on its way up.
It is the first of the canines, and I had only checked a few weeks before, for the age of when children begin to lose those ones.
As with most things in J's life, he went through trauma during the first two baby teeth loss. He let out blood curdling screams and had the panicked panting and shock, when he was losing his first tooth.
He refused to eat with the tooth during that time, and he delayed its exit for quite a while.
Finally the first tooth, and the second tooth were lost only a few days later, and occurred at school, during assembly. Again he became highly distressed, and was removed by a support staff, to help calm him. His eagle eyed teacher spotted a tooth on the floor by his chair, and quickly assessed it was from J, and that was the reason for his outburst.
There is an old blog post here, from December 2010, where he had lost his seventh tooth.
Since then, he has lost all of his eight front teeth, four top and four bottom, and he never made any fuss, never became distressed, and never even attempted to show me.
This tooth is the first I have managed to keep. All the other teeth, he either threw away - apart from the assembly ones - or flushed them down the toilet. I would only be aware that another tooth had fallen out, when I saw the gap.
He has amazingly strong teeth, white, and totally free from any decay. I look upon that as a blessing, as it would be horrendous trying to get him to sit still for an injection in his gum, let alone actually sit in a dentists chair, lie back, and open his mouth. So far, he has progressed to allowing the dentist to shine her light into his mouth, use the little mirror, and paste on some fluoride gel. This alone has taken two years to build up to, and he still won't sit in the chair ; the dentist goes with the flow and his needs, and lets him stand by the door, a hand on the handle, ready to leave as quick as possible!
We are lucky that his dentist has a lot of autistic children on her books, and her manner and approach is exactly what J needs.
I can now be on extra alert for the next canine to become wobbly, and maybe I will actually be there to catch it. Maybe, but probably not!
J's canine tooth that was found on the floor
Saturday, 14 September 2013
The Kindness of a Stranger
There is a really heart warming and uplifting story that has hit the news.
I have done a few checks on it, to authenticate it's content, and it appears to be a genuine one.
In North Carolina, America, the England family were having a meal out in a restaurant. Their eight year old son, Riley, has special needs. He has had brain surgery to try and manage his epilepsy, and he is also non verbal, which can lead to him becoming frustrated and agitated, causing noise and disruption.
During this particular meal, he became noisy and began banging the table.
The mum was feeling self conscious and anxious about the other diners, and how they might feel.
I have been in that situation, and you can't help but keep looking around trying to see if people are staring or nudging each other, passing judgement.
When their food began being served to their table, another waitress appeared, and had tears in her eyes. She handed the family a note, and written on it was this.........
A stranger had paid for their meal, and wrote a sentence that not only gave this family some much needed comfort, but has spread round the world, touching the hearts of many.
What this stranger felt was a small gesture, is in fact incredibly poignant, and resonates with all of us that can relate to this familiar scene. How refreshing. How kind. Thank you Mr Stranger.
I have done a few checks on it, to authenticate it's content, and it appears to be a genuine one.
In North Carolina, America, the England family were having a meal out in a restaurant. Their eight year old son, Riley, has special needs. He has had brain surgery to try and manage his epilepsy, and he is also non verbal, which can lead to him becoming frustrated and agitated, causing noise and disruption.
The England family, with Riley, bottom right.
During this particular meal, he became noisy and began banging the table.
The mum was feeling self conscious and anxious about the other diners, and how they might feel.
I have been in that situation, and you can't help but keep looking around trying to see if people are staring or nudging each other, passing judgement.
When their food began being served to their table, another waitress appeared, and had tears in her eyes. She handed the family a note, and written on it was this.........
A stranger had paid for their meal, and wrote a sentence that not only gave this family some much needed comfort, but has spread round the world, touching the hearts of many.
What this stranger felt was a small gesture, is in fact incredibly poignant, and resonates with all of us that can relate to this familiar scene. How refreshing. How kind. Thank you Mr Stranger.
Thursday, 12 September 2013
His Second Week at the New School
J is loving his new school.
He bounces around in the morning, dressed and ready well before the school bus is due to collect him.
Upon his return he is giggly, laughing, and full of cheer.
It is true what someone from his old school said ; that he is ready for the next stage in his education, and needs more challenges.
There has been one incident so far, as documented in his 'home / school' record book. Apparently he was repeating a fellow pupil's name over and again, and the other pupil became angry at him for doing so. J was put in to a 'time out'.
I am kind of stuck, wanting to remind the teacher that J does have repetitive speech. It is a comfort to him, albeit a nuisance for others.
If he latches onto a new word that gives him sensory enjoyment, it is hard to stop him repeating it.
He also becomes stressed if his process of saying the word is disrupted.
As this is a special needs school, it surprises me that the teacher was so abrupt with him, and in her message to me in the book.
I will just have to let it ride, as I do not want to be 'that parent'. Plus, J is happy. He probably has no idea about the incident being inappropriate, and the need to not repeat a word that is annoying someone else.
He bounces around in the morning, dressed and ready well before the school bus is due to collect him.
Upon his return he is giggly, laughing, and full of cheer.
It is true what someone from his old school said ; that he is ready for the next stage in his education, and needs more challenges.
There has been one incident so far, as documented in his 'home / school' record book. Apparently he was repeating a fellow pupil's name over and again, and the other pupil became angry at him for doing so. J was put in to a 'time out'.
I am kind of stuck, wanting to remind the teacher that J does have repetitive speech. It is a comfort to him, albeit a nuisance for others.
If he latches onto a new word that gives him sensory enjoyment, it is hard to stop him repeating it.
He also becomes stressed if his process of saying the word is disrupted.
As this is a special needs school, it surprises me that the teacher was so abrupt with him, and in her message to me in the book.
I will just have to let it ride, as I do not want to be 'that parent'. Plus, J is happy. He probably has no idea about the incident being inappropriate, and the need to not repeat a word that is annoying someone else.
Saturday, 7 September 2013
Moaner? Complainer? Yes, that's Me!
I am a bit of a complainer. A moaner if you like. But I actually address the problem that is irking me, rather than do nothing proactive, except seethe with anger, or frustration.
I am very proactive when it comes to most parts of my life and family.
Don't get me wrong though, I do not make complaints about the smaller issues of everyday life, such as queues in shops, loud music in a restaurant, two shop assistants talking about their social life instead of manning another till during peak shopping time - these do irritate me, but it's only a small part of my day, and pointless becoming irate over - life is too short to sweat the small stuff after all.
What is the point of suffering an injustice or malpractice, and not doing anything about it? Instead just complain to friends and family, over and again? - Do something! How can companies, organisations, businesses, etcetera, learn, if they are not told where they have gone wrong?
I always think to myself that, if I can improve a service or facility et al, just from an email or letter, then the next family receiving help will not have to experience what I, or my family have had to.
Again I will state that I am not a busy body or a tattle tale. I don't look for faults just so I can put pen to paper. It just seems unfortunate that over the last eleven years, the services that are in place to help, guide, inform, support, educate and medicate, have quite a few 'teething problems', 'hiccups', 'lessons they will learn from', and my family seem to bear the brunt of one or all of them!
It is a standing joke amongst certain friends and family as to what will go wrong, be forgotten about, or misplaced, in the services and support J receives, that I then have to sort out.
I have to keep my humour up, as it really is a farce sometimes, and it's almost unbelievable the amount of times clerical errors occur, just for one child.
I think about the people in Britain that complain non stop about the government. Quite rightly complaints should be aired, as many politicians work only to better their lives, not the people that elected them into power.
But what about those that didn't vote? The ones that declared their abstaining rights. The ones that couldn't be bothered to go to their local polling station and put a cross in a box. How can they make a fuss about their government, when they didn't actually participate in electing them?
It's like buying a house right next to a motorway, and then three months later complaining about the noise. Actions have consequences, but so does apathy and stoic refusal.
If I can make a positive change to something I have no control over, and ensure future families avoid the same error making from others, then I will do my upmost to keep on and never stop trying.
I am very proactive when it comes to most parts of my life and family.
Don't get me wrong though, I do not make complaints about the smaller issues of everyday life, such as queues in shops, loud music in a restaurant, two shop assistants talking about their social life instead of manning another till during peak shopping time - these do irritate me, but it's only a small part of my day, and pointless becoming irate over - life is too short to sweat the small stuff after all.
What is the point of suffering an injustice or malpractice, and not doing anything about it? Instead just complain to friends and family, over and again? - Do something! How can companies, organisations, businesses, etcetera, learn, if they are not told where they have gone wrong?
I always think to myself that, if I can improve a service or facility et al, just from an email or letter, then the next family receiving help will not have to experience what I, or my family have had to.
Again I will state that I am not a busy body or a tattle tale. I don't look for faults just so I can put pen to paper. It just seems unfortunate that over the last eleven years, the services that are in place to help, guide, inform, support, educate and medicate, have quite a few 'teething problems', 'hiccups', 'lessons they will learn from', and my family seem to bear the brunt of one or all of them!
It is a standing joke amongst certain friends and family as to what will go wrong, be forgotten about, or misplaced, in the services and support J receives, that I then have to sort out.
I have to keep my humour up, as it really is a farce sometimes, and it's almost unbelievable the amount of times clerical errors occur, just for one child.
I think about the people in Britain that complain non stop about the government. Quite rightly complaints should be aired, as many politicians work only to better their lives, not the people that elected them into power.
But what about those that didn't vote? The ones that declared their abstaining rights. The ones that couldn't be bothered to go to their local polling station and put a cross in a box. How can they make a fuss about their government, when they didn't actually participate in electing them?
It's like buying a house right next to a motorway, and then three months later complaining about the noise. Actions have consequences, but so does apathy and stoic refusal.
If I can make a positive change to something I have no control over, and ensure future families avoid the same error making from others, then I will do my upmost to keep on and never stop trying.
Thursday, 5 September 2013
The First Day - And a Small Hiccup
Well the day finally arrived, and the start did not go well, thanks to a slapdash attitude from the transport department.
J's bus did not turn up until 10 minutes before school began! It takes about 15-20 minutes to drive there, and they still had more children to collect.
The escort told me that their company had not been given any details about the names and addresses of who they would be collecting, until late afternoon, the day before! Then they had received two more names that morning and had to work out the route to collect all the children.
I, of course complained to the transport department. It was not the bus driver or his companies fault.
I had a rather clipped woman in the office give me the impression I was in the wrong and that, in her words "it's only year 7, it doesn't really matter that much".
So I fired off an email to her.
*I pointed out that it was J's first day at a new school.
*We had been told collection time would be around 8.15am, and so he was all ready to go. He was a bit stressed because he couldn't wear his old school top, but I was managing him. But then, because the bus was so late, he got into an almost melt down state. "Hello bus", over and over again. Crying. Smacking his arms. The bus arrived at 8.40am.
*The year the child is in makes no difference to the time of arrival at school, and punctuation is still expected at special needs schools ; the same rules apply.
*Being blasé about it, really doesn't cut anything with me.
*The whole point of requiring the transport is because I cannot take him myself
*Children with autism, learning difficulties, cognitive delays, communication limits etcetera, like routine. It makes them feel secure. They are not lifeless beings that get ferried about. They still have feelings.
I received a reply within the hour from her.
The obligatory apology was issued.
Then an explanation ; They don't give out the details of the children being collected until the day before as there can be changes.
I accepted her reply, and left it there.
Apart from that, it seems J had a good first day at his new school. He came home happy, singing to himself, laughing, and being very jolly.
Later on in the evening, I found a drawing he had done on his magnetic drawing board.
I asked him who they were, and he tried to tell me, but because there are new names in his class, he wasn't able to say them clearly for me, so he mumbled.
They are all wearing their uniform too, with the school logo on the top.
It is so good that J can communicate his feelings by his drawings. I could tell from his happy state that he had enjoyed school, and this picture confirmed it.
The bus arrived on time this morning, and J raced off to get aboard. I hope yesterdays trouble is the only one we encounter this year!
J's bus did not turn up until 10 minutes before school began! It takes about 15-20 minutes to drive there, and they still had more children to collect.
The escort told me that their company had not been given any details about the names and addresses of who they would be collecting, until late afternoon, the day before! Then they had received two more names that morning and had to work out the route to collect all the children.
I, of course complained to the transport department. It was not the bus driver or his companies fault.
I had a rather clipped woman in the office give me the impression I was in the wrong and that, in her words "it's only year 7, it doesn't really matter that much".
So I fired off an email to her.
*I pointed out that it was J's first day at a new school.
*We had been told collection time would be around 8.15am, and so he was all ready to go. He was a bit stressed because he couldn't wear his old school top, but I was managing him. But then, because the bus was so late, he got into an almost melt down state. "Hello bus", over and over again. Crying. Smacking his arms. The bus arrived at 8.40am.
*The year the child is in makes no difference to the time of arrival at school, and punctuation is still expected at special needs schools ; the same rules apply.
*Being blasé about it, really doesn't cut anything with me.
*The whole point of requiring the transport is because I cannot take him myself
*Children with autism, learning difficulties, cognitive delays, communication limits etcetera, like routine. It makes them feel secure. They are not lifeless beings that get ferried about. They still have feelings.
I received a reply within the hour from her.
The obligatory apology was issued.
Then an explanation ; They don't give out the details of the children being collected until the day before as there can be changes.
I accepted her reply, and left it there.
Apart from that, it seems J had a good first day at his new school. He came home happy, singing to himself, laughing, and being very jolly.
Later on in the evening, I found a drawing he had done on his magnetic drawing board.
I asked him who they were, and he tried to tell me, but because there are new names in his class, he wasn't able to say them clearly for me, so he mumbled.
They are all wearing their uniform too, with the school logo on the top.
It is so good that J can communicate his feelings by his drawings. I could tell from his happy state that he had enjoyed school, and this picture confirmed it.
The bus arrived on time this morning, and J raced off to get aboard. I hope yesterdays trouble is the only one we encounter this year!
Saturday, 31 August 2013
First Day Nerves
Nerves have set in for me. It's four days until J starts at his new school.
My main worries are to do with the staff not understanding him, and his quirks, and creating stressful situations that could have been avoided if they knew what his triggers are, or how to calm him.
Yes I understand they are trained to work with older children/teenagers with moderate to severe learning difficulties, but each child is different. As J cannot communicate effectively or appropriately, there will be situations arising.
I am contemplating jotting some things down for his teacher. Information such as ;
* His dislike or being frightened of something, when he says "goodbye ..............".
* His penchant for not wearing underwear - this has been occurring for over two years now...
See This Post here for the first time I blogged about it.
I have been reassured by a few people, that it is quite common, and is a sensory issue. I have tried him with different styles, and only buy 100% cotton, but he removes them instantly.
I am fairly relaxed about it really, and know that in the bigger picture, it really doesn't feature very highly as a major problem, so I am hoping that my laid back approach will reward me with him one day just deciding to wear them again. This approach has proved me right before and seems to work for us.
*His need to be free to attend bathroom breaks as and when he requires it. - The school state that children are requested to wait for break time to go to the bathroom, but this being a special school, I find this not appropriate and a little misguided. It is, after all, not a mainstream school. J again has sensory issues relating to his bladder, not medical, and to deny him a bathroom break is going against his needs, in my opinion.
The first week will be tense for me, I know that for sure. As for J, if his stress triggers are kept to a minimum, he will settle in well.
My main worries are to do with the staff not understanding him, and his quirks, and creating stressful situations that could have been avoided if they knew what his triggers are, or how to calm him.
Yes I understand they are trained to work with older children/teenagers with moderate to severe learning difficulties, but each child is different. As J cannot communicate effectively or appropriately, there will be situations arising.
I am contemplating jotting some things down for his teacher. Information such as ;
* His dislike or being frightened of something, when he says "goodbye ..............".
* His penchant for not wearing underwear - this has been occurring for over two years now...
See This Post here for the first time I blogged about it.
I have been reassured by a few people, that it is quite common, and is a sensory issue. I have tried him with different styles, and only buy 100% cotton, but he removes them instantly.
I am fairly relaxed about it really, and know that in the bigger picture, it really doesn't feature very highly as a major problem, so I am hoping that my laid back approach will reward me with him one day just deciding to wear them again. This approach has proved me right before and seems to work for us.
*His need to be free to attend bathroom breaks as and when he requires it. - The school state that children are requested to wait for break time to go to the bathroom, but this being a special school, I find this not appropriate and a little misguided. It is, after all, not a mainstream school. J again has sensory issues relating to his bladder, not medical, and to deny him a bathroom break is going against his needs, in my opinion.
The first week will be tense for me, I know that for sure. As for J, if his stress triggers are kept to a minimum, he will settle in well.
Tuesday, 27 August 2013
Monday, 26 August 2013
The Boy and his Rocking Chair
J has a new pastime which seems to calm him. He sits in his wooden rocking chair, which is by his bedroom window, pulls the net curtain to the side, and rocks away whilst looking at the cars driving past, the people ambling up and down the pavement, the trees, full of leaves, swishing in the breeze, and the occasional teenager on a moped speeding past, making more noise than a jumbo jet, but with the amount of power of a hairdryer.
He sits there for a good half an hour, just rocking back and forth, looking outside.
He even gets his 'sleepy' which is his word for his bed cover, and covers his lap over! He looks so lovely like that, albeit like an elderly man!
I bought the rocking chair a few years ago on eBay. I won it in an auction for 7.55 and it was local to me too. Such a bargain!
I wrote a while ago about the windows in his bedroom being tinted, so the light comes in, but people cannot see in very clearly.
When I had the windows double glazed a while back I asked if they could make his tinted, and they did, and not with those awful plastic sheets that you can buy online, that crinkle and bubble the second a centimetre of it touches a window pane, but a proper tinted window.
I had tried those tinted sheets prior to the double glazing, and despite reading so many negative reviews about them, I was desperate to obscure the view into his bedroom, mainly because of his propensity to wander naked around his room, after a bath or shower, and not understand that curtains should be closed, and definitely no lights should be on, making it more visible for outside to see in.
Once I had saved enough money I was able to double glaze the whole house, and gone were the draughty nights in winter, where the curtains would sway, and icicles grew on the inside of the glass!
So when he sits and rocks, and watches the world go by, I know our neighbours opposite won't think he is being a nosey Norman, as they won't be able to see him.
I first wrote about my tinted window idea here - Tinted Windows 6th May 2010
and then here - Windows 31st July 2010
He sits there for a good half an hour, just rocking back and forth, looking outside.
He even gets his 'sleepy' which is his word for his bed cover, and covers his lap over! He looks so lovely like that, albeit like an elderly man!
I bought the rocking chair a few years ago on eBay. I won it in an auction for 7.55 and it was local to me too. Such a bargain!
When I had the windows double glazed a while back I asked if they could make his tinted, and they did, and not with those awful plastic sheets that you can buy online, that crinkle and bubble the second a centimetre of it touches a window pane, but a proper tinted window.
I had tried those tinted sheets prior to the double glazing, and despite reading so many negative reviews about them, I was desperate to obscure the view into his bedroom, mainly because of his propensity to wander naked around his room, after a bath or shower, and not understand that curtains should be closed, and definitely no lights should be on, making it more visible for outside to see in.
Once I had saved enough money I was able to double glaze the whole house, and gone were the draughty nights in winter, where the curtains would sway, and icicles grew on the inside of the glass!
So when he sits and rocks, and watches the world go by, I know our neighbours opposite won't think he is being a nosey Norman, as they won't be able to see him.
I first wrote about my tinted window idea here - Tinted Windows 6th May 2010
and then here - Windows 31st July 2010
Sunday, 25 August 2013
Spoons
Here's another drawing I found on J's magnetic drawer. As I scrambled to find my iPhone to take a photo of it, he appeared. I asked him what it is, in the way I always ask him, by pointing directly at the picture and saying "what's this J?". He replied - "spoons".
So there you go, another masterpiece created - irony intended - and it's of spoons! Perhaps he was feeling hungry when he drew them, only he knows, and it's all inside his active and very clever, but silent, brain.
So there you go, another masterpiece created - irony intended - and it's of spoons! Perhaps he was feeling hungry when he drew them, only he knows, and it's all inside his active and very clever, but silent, brain.
Wednesday, 21 August 2013
The Autistic Personality of My Boy
I was asked the other day if I felt sad that my Boy has no personality, as he is unable to communicate effectively, and lives in a 'bubble'. As I always do, when greeted by this kind of question, I didn't get angry, or rude, as I am trying to educate people, not intimidate.
I explained he has a very cheeky side to him, and when something makes him giggle, it is a joy to hear and see.
Here are a few examples of the funny and sweet side of my Boy -
>) When he asks for certain food items he loves eating, and I refuse him, he will try and ask again, but in a different tone. He changes from a sing-song kind of voice, to a deep voice, a small voice etc.
This is a video link to YouTube that has Marjorie Dawes from the BBC programme Little Britain.
This is her talking about cake. If you like the show you will get what I am on about, if not, watch the clip. The way she says "cake" throughout this sketch is so similar to the way J asks for food! Marjorie Dawes - Cake
>) J had a very special bond with a girl at his old school. She moved to the school he is starting at in September, last year, as she is a year older than him.
He has seen her on his transition visits, and I know they will become close again. During the school day, if she became stressed, she would be taken to a quiet room with a staff member, and allowed some down time. J would then become upset that she had gone. Both J and A, the girl in question, have very similar autistic traits, and learning and communication difficulties. I think that is why they are soul mates. They 'get' each other in a world where they find it so hard to live in.
A staff member would take him down to the quiet room and show him that A was there.
This simple act helped him calm down, as he then knew she hadn't disappeared.
>) I was talking to a member of staff from his class a few weeks ago, and she told me her memory of J would always be of the boy that could charm the ladies. She told me she saw him sitting under a tree, right next to the girl, A, and she was gazing at him adoringly, whilst he had one shoe and sock off, and was biting his toenails! Ewww! But it still makes me laugh at the image this conjured up.
>) Back to food - the big love of J's life ;
At school, during snack time, if it was toast, J would line up with the other five or six children in his class, and get his slice with Marmite on. Each child would have one slice. J however loves toast. So he would re-join the queue and almost behave blasé about it, as if he wasn't really trying to get another slice. His cheeky nature showing there!
>) At school as well, in the classroom, each child had a water bottle with their name on. It would stay in school and would be refilled every day.
J one day took responsibility for this, instead of one of the staff members.
He would fill up each bottle with water, and place them back in the crate, where they were kept.
If a child was not in school that morning, he would not fill up their bottle.
Now there are two really positive points to this ;
1) The water bottles were all the same colour and design. The child's name was written in a black marker pen along the body of the bottle. J, despite having major communication problems, could differentiate each name, and so he always filled the right bottles up.
2) He may appear to be in his own world, or 'bubble', but he is very aware of his surroundings and of those that enter or leave it, and by not filling up an absent classmate's bottle, he shows awareness and logic.
So in response to the question I was asked, I demonstrated that J does have a personality, it is just more subtle than belting out tunes from a Broadway show, or giving an inspiring performance of The Merchant of Venice!
I explained he has a very cheeky side to him, and when something makes him giggle, it is a joy to hear and see.
Here are a few examples of the funny and sweet side of my Boy -
>) When he asks for certain food items he loves eating, and I refuse him, he will try and ask again, but in a different tone. He changes from a sing-song kind of voice, to a deep voice, a small voice etc.
This is a video link to YouTube that has Marjorie Dawes from the BBC programme Little Britain.
This is her talking about cake. If you like the show you will get what I am on about, if not, watch the clip. The way she says "cake" throughout this sketch is so similar to the way J asks for food! Marjorie Dawes - Cake
>) J had a very special bond with a girl at his old school. She moved to the school he is starting at in September, last year, as she is a year older than him.
He has seen her on his transition visits, and I know they will become close again. During the school day, if she became stressed, she would be taken to a quiet room with a staff member, and allowed some down time. J would then become upset that she had gone. Both J and A, the girl in question, have very similar autistic traits, and learning and communication difficulties. I think that is why they are soul mates. They 'get' each other in a world where they find it so hard to live in.
A staff member would take him down to the quiet room and show him that A was there.
This simple act helped him calm down, as he then knew she hadn't disappeared.
>) I was talking to a member of staff from his class a few weeks ago, and she told me her memory of J would always be of the boy that could charm the ladies. She told me she saw him sitting under a tree, right next to the girl, A, and she was gazing at him adoringly, whilst he had one shoe and sock off, and was biting his toenails! Ewww! But it still makes me laugh at the image this conjured up.
>) Back to food - the big love of J's life ;
At school, during snack time, if it was toast, J would line up with the other five or six children in his class, and get his slice with Marmite on. Each child would have one slice. J however loves toast. So he would re-join the queue and almost behave blasé about it, as if he wasn't really trying to get another slice. His cheeky nature showing there!
>) At school as well, in the classroom, each child had a water bottle with their name on. It would stay in school and would be refilled every day.
J one day took responsibility for this, instead of one of the staff members.
He would fill up each bottle with water, and place them back in the crate, where they were kept.
If a child was not in school that morning, he would not fill up their bottle.
Now there are two really positive points to this ;
1) The water bottles were all the same colour and design. The child's name was written in a black marker pen along the body of the bottle. J, despite having major communication problems, could differentiate each name, and so he always filled the right bottles up.
2) He may appear to be in his own world, or 'bubble', but he is very aware of his surroundings and of those that enter or leave it, and by not filling up an absent classmate's bottle, he shows awareness and logic.
So in response to the question I was asked, I demonstrated that J does have a personality, it is just more subtle than belting out tunes from a Broadway show, or giving an inspiring performance of The Merchant of Venice!
Tuesday, 20 August 2013
A Letter of Hate from a Neighbour.......
This letter has been circulating Facebook over the last 24 hours.
Have a read of it. If you click the photo it will enlarge for you.
According to the person who has been asking for 'shares' of this, she found this letter on an online forum, and was posted up by a mum in Canada.
I do not know if this is a genuine letter, or one created by someone looking for attention and fame on the internet. Even if it is a spoof, the points raised from the words written are experienced daily by parents of children with special needs, so it is still raising awareness of the hate we receive from the public. Have a read and make your own mind up.
Update ----- This has now made world wide news, and according to some reports, Ontario police are investigating the origins of the letter, and are looking at it as a 'hate crime'.
Have a read of it. If you click the photo it will enlarge for you.
According to the person who has been asking for 'shares' of this, she found this letter on an online forum, and was posted up by a mum in Canada.
I do not know if this is a genuine letter, or one created by someone looking for attention and fame on the internet. Even if it is a spoof, the points raised from the words written are experienced daily by parents of children with special needs, so it is still raising awareness of the hate we receive from the public. Have a read and make your own mind up.
Update ----- This has now made world wide news, and according to some reports, Ontario police are investigating the origins of the letter, and are looking at it as a 'hate crime'.
I claim no ownership to this letter, however it has been spread via the 'share' button on Facebook, so has become of interest to the public.
Thursday, 15 August 2013
Storymaker Drawings and Attention to Detail
I found these drawings J did one afternoon. They are of the characters from the children's television programme from a few years ago, called the Storymakers.
I have made a post about this before, showing another of his drawings of these characters. You can see this here, at the bottom of this post link - The Future's Bright
The reason the figures drawn in black, change appearances slightly is due to that character being played by different actors. But in the bottom left drawing he has changed the actor and the pink puppet, Jackson, around, so Jackson is now drawn in black, whilst the human character is in pink.
Jelly's hair always gets drawn going outwards and Jackson's is always drawn standing upwards.
These are the characters from the show.
I managed to salvage two of the drawings just as he was screwing the papers up. I have to be quick, otherwise his drawings become shredded bits of paper.
I have made a post about this before, showing another of his drawings of these characters. You can see this here, at the bottom of this post link - The Future's Bright
The reason the figures drawn in black, change appearances slightly is due to that character being played by different actors. But in the bottom left drawing he has changed the actor and the pink puppet, Jackson, around, so Jackson is now drawn in black, whilst the human character is in pink.
Jelly's hair always gets drawn going outwards and Jackson's is always drawn standing upwards.
These are the characters from the show.
I managed to salvage two of the drawings just as he was screwing the papers up. I have to be quick, otherwise his drawings become shredded bits of paper.
Tuesday, 6 August 2013
Good Morning Mummy!
J has been really responsive over the last two weeks or so.
One morning, he walked into my bedroom, and I automatically said "good morning J", and where as he has always replied repeating back "good morning J", this time he looked straight at me and said "good morning mummy". I was awe struck. He'd never replied to me in the correct form before. It felt really good.
J has never wanted cuddles or kisses. He has always been given them though, despite his nonchalance towards it. He usually stands still as you cuddle him, no movement or return of the cuddle. When he is asked to give someone a kiss, he makes a dramatic "mwah" sound and bends his head towards the person, but doesn't make contact.
The other day I could tell he was looking for the iPad. I stood in the doorway in the hall, and pointed to where I had left it on charge in the playroom. He went and unconnected it, and walked back to me, leaned in, and gave me a peck on the cheek, and said "thank you mummy". I am sure I stood still for a good minute, not quite believing what had taken place. Again, he had never proffered kisses, and never said thank you for something, unless prompted to do so, to which it would be an almost echolalia reply.
J's usual iPad use is for YouTube and watching all the old children's shows he loves, or for taking endless photos of exactly the same object.
There are games apps on there too. These are ones my middle son, O, aged 7, plays. J has opened the game apps up before, but never played them.
One early evening, when my middle son was away for the night, I could hear the familiar tinny music coming from one of the game apps. I popped my head in to J's room, and he was sitting there playing an app called 'Subway Surf'. He wasn't just messing around with it, he was actually playing it, correctly. I thought nothing more about it, until my middle son was back and took the iPad to play. He called out, asking who had been playing that game, and I took a deep breath, waiting for the onslaught of shouting at me for letting J play it. But instead of hearing the yells of complaint, he was really pleased. The gold coin count had increased massively. J had been collecting them during each go. O was actually pleased about it, which made a refreshing change for me.
It is hard to be a sibling of a brother with quite severe learning difficulties, and he has witnessed many an outing where strangers stare, tut, make hurtful comments, and condemn me for my poor skills at being a mother.
Only very recently, at the local beach, a man in his 60's suddenly started verbally assaulting J. J had had the nerve to stand near the man's car, which was parked right up to the pebbles at the beginning of the beach. The shouting from this man caught the attention of a father sitting with his children. He stood up and sort of gave me a look, questioning if I needed any help.
I have become pretty used to this kind of behaviour from strangers, so I calmly informed him J had special needs, and was not a threat to him or his car. This mans wife then attacks me with the kind of accent that makes someone from The Only Way is Essex, sound intellectual. She yelled that her husband was dying from cancer. I again calmly said that although that was sad, it had nothing to do with their behaviour towards my child. On and on they ranted. The father was still watching, and headed over in our direction, casually, not striding, and asked me if I needed help. He was willing to call the police and be a witness to the attack. I declined. J and I were bearing the brunt of this couple's anger at the cancer. It was just the wrong place, wrong time for us to be there.
O was standing by watching this. It is not healthy for children to be around such anger and confrontation, so I understand he gets frustrated, and can take that out on his siblings.
Going back to J, he was on one of our rambles in the forest, and I gave him the chance to decide which path to take. Usually either O or W, his youngest brother, aged 3, make the decision. On this occasion J stood at a cross path and said very clearly, "we go this way" in a very sing song kind of voice.
It's been very well received by me, and I hope J can understand that. I can liken it to the pride a parent feels when their first born smiles properly for the first time, or gives a full on belly laugh to your funny face pulling or exclaims of "boo!".
One morning, he walked into my bedroom, and I automatically said "good morning J", and where as he has always replied repeating back "good morning J", this time he looked straight at me and said "good morning mummy". I was awe struck. He'd never replied to me in the correct form before. It felt really good.
J has never wanted cuddles or kisses. He has always been given them though, despite his nonchalance towards it. He usually stands still as you cuddle him, no movement or return of the cuddle. When he is asked to give someone a kiss, he makes a dramatic "mwah" sound and bends his head towards the person, but doesn't make contact.
The other day I could tell he was looking for the iPad. I stood in the doorway in the hall, and pointed to where I had left it on charge in the playroom. He went and unconnected it, and walked back to me, leaned in, and gave me a peck on the cheek, and said "thank you mummy". I am sure I stood still for a good minute, not quite believing what had taken place. Again, he had never proffered kisses, and never said thank you for something, unless prompted to do so, to which it would be an almost echolalia reply.
J's usual iPad use is for YouTube and watching all the old children's shows he loves, or for taking endless photos of exactly the same object.
There are games apps on there too. These are ones my middle son, O, aged 7, plays. J has opened the game apps up before, but never played them.
One early evening, when my middle son was away for the night, I could hear the familiar tinny music coming from one of the game apps. I popped my head in to J's room, and he was sitting there playing an app called 'Subway Surf'. He wasn't just messing around with it, he was actually playing it, correctly. I thought nothing more about it, until my middle son was back and took the iPad to play. He called out, asking who had been playing that game, and I took a deep breath, waiting for the onslaught of shouting at me for letting J play it. But instead of hearing the yells of complaint, he was really pleased. The gold coin count had increased massively. J had been collecting them during each go. O was actually pleased about it, which made a refreshing change for me.
It is hard to be a sibling of a brother with quite severe learning difficulties, and he has witnessed many an outing where strangers stare, tut, make hurtful comments, and condemn me for my poor skills at being a mother.
Only very recently, at the local beach, a man in his 60's suddenly started verbally assaulting J. J had had the nerve to stand near the man's car, which was parked right up to the pebbles at the beginning of the beach. The shouting from this man caught the attention of a father sitting with his children. He stood up and sort of gave me a look, questioning if I needed any help.
I have become pretty used to this kind of behaviour from strangers, so I calmly informed him J had special needs, and was not a threat to him or his car. This mans wife then attacks me with the kind of accent that makes someone from The Only Way is Essex, sound intellectual. She yelled that her husband was dying from cancer. I again calmly said that although that was sad, it had nothing to do with their behaviour towards my child. On and on they ranted. The father was still watching, and headed over in our direction, casually, not striding, and asked me if I needed help. He was willing to call the police and be a witness to the attack. I declined. J and I were bearing the brunt of this couple's anger at the cancer. It was just the wrong place, wrong time for us to be there.
O was standing by watching this. It is not healthy for children to be around such anger and confrontation, so I understand he gets frustrated, and can take that out on his siblings.
Going back to J, he was on one of our rambles in the forest, and I gave him the chance to decide which path to take. Usually either O or W, his youngest brother, aged 3, make the decision. On this occasion J stood at a cross path and said very clearly, "we go this way" in a very sing song kind of voice.
It's been very well received by me, and I hope J can understand that. I can liken it to the pride a parent feels when their first born smiles properly for the first time, or gives a full on belly laugh to your funny face pulling or exclaims of "boo!".
Sunday, 28 July 2013
Another Amazing Drawing by My Boy
How awesome is this drawing?!
J drew this today, and I was alerted by my mother to its existence, so I was able to get a photo of it before he erased it.
I know I always say this, but, I love being able to 'see' inside his mind. He communicates this way.
He has drawn a boy, with tears rolling down his face, eyes closed, and a sad, downturned mouth.
On the right is a girl - it looks like a dress he has drawn so I am presuming its a girl. She is smiling and happy. They are also holding hands.
I have asked him who it is, and he just replies, "sad" as he points to the sad face, and "happy", and points to the smiling face.
My Boy is amazing!
J drew this today, and I was alerted by my mother to its existence, so I was able to get a photo of it before he erased it.
I know I always say this, but, I love being able to 'see' inside his mind. He communicates this way.
He has drawn a boy, with tears rolling down his face, eyes closed, and a sad, downturned mouth.
On the right is a girl - it looks like a dress he has drawn so I am presuming its a girl. She is smiling and happy. They are also holding hands.
I have asked him who it is, and he just replies, "sad" as he points to the sad face, and "happy", and points to the smiling face.
My Boy is amazing!
Thursday, 25 July 2013
Best Mummy Friends ' Just Because of the Connection'?
There is a presumption that all mums of special needs children should be best pals, life long buddies, best friends forever. With our connection to each other, by way of our children, there should never be any falling out, or ostracising of one from the 'group'.
This is, and you most probably already know the answer, a complete fallacy.
Just because there is a common denominator linking us all together, there is still the character, belief, attitude, manners, opinions, and kindness that is ever present within the other mums.
For some this is positive and binds a friendship together. For others this segregates them apart.
Why is there this expectation that we should all be best buds?
Should every person with a moustache be best friends, just because they share a likeness for growing facial hair?
As an example, there are some incredibly rude OAPs about. It shocks some people, because they expect an older person in their 70's and above to be kind and caring, not miserable with a bad attitude.
But the rule of thumb is ; a young person with a bad attitude will grow into an OAP with a bad attitude. They don't suddenly gain a free bus pass and morph into a cuddly, lavender smelling little old lady. If they have spent their life swearing at random strangers, drinking gin with no tonic, despising everyone else, and making others lives a misery, there is a strong betting that they will be doing exactly the same in their twilight years, albeit with less speed.
I apply this to the circle of special needs parents. Just because we share something in common, it doesn't automatically make that person 'better' than before. The personality and opinions are still their own, and if they are a brash, rude, opinionated person, they don't suddenly become kind, polite, and helpful.
I do not dispute that some very solid and life long friendships are made via the connection, that otherwise may not have happened, due to paths not crossing. But there are some you just want to take a huge side step from. Don't feel guilty for that. We can't like everybody, all of the time.
What I will say though is, allow yourself to make your own mind up about someone. Don't let gossip be the deciding factor. Trust you own instincts, make an effort to talk to everyone. As in your school days gone by, there will always be a 'playground mentality' of a minority of parents. The looks. The gossip. The cliques. Remembering you are an adult, and not becoming the ring leaders next target just from being yourself, keep on with your head held high, and know that not everyone wants to be your friend just because of the 'similarities of circumstances'.
I can guarantee though that you will meet some amazing women. The kind of woman that has an inner strength of a thousand World's Strongest Men, the ability to see the lighter side of life, the humour to make others smile on a down day, and who multi-tasks beyond belief - and usually all before 11am!
Hold those friendships close. Even the most positive mother will have some dark days. She will be relying on her close friends to be there for her, even if she is trying her hardest to hide that fact.
The world of special needs is always easier when you have someone else living there too.
This is, and you most probably already know the answer, a complete fallacy.
Just because there is a common denominator linking us all together, there is still the character, belief, attitude, manners, opinions, and kindness that is ever present within the other mums.
For some this is positive and binds a friendship together. For others this segregates them apart.
Why is there this expectation that we should all be best buds?
Should every person with a moustache be best friends, just because they share a likeness for growing facial hair?
As an example, there are some incredibly rude OAPs about. It shocks some people, because they expect an older person in their 70's and above to be kind and caring, not miserable with a bad attitude.
But the rule of thumb is ; a young person with a bad attitude will grow into an OAP with a bad attitude. They don't suddenly gain a free bus pass and morph into a cuddly, lavender smelling little old lady. If they have spent their life swearing at random strangers, drinking gin with no tonic, despising everyone else, and making others lives a misery, there is a strong betting that they will be doing exactly the same in their twilight years, albeit with less speed.
I apply this to the circle of special needs parents. Just because we share something in common, it doesn't automatically make that person 'better' than before. The personality and opinions are still their own, and if they are a brash, rude, opinionated person, they don't suddenly become kind, polite, and helpful.
I do not dispute that some very solid and life long friendships are made via the connection, that otherwise may not have happened, due to paths not crossing. But there are some you just want to take a huge side step from. Don't feel guilty for that. We can't like everybody, all of the time.
What I will say though is, allow yourself to make your own mind up about someone. Don't let gossip be the deciding factor. Trust you own instincts, make an effort to talk to everyone. As in your school days gone by, there will always be a 'playground mentality' of a minority of parents. The looks. The gossip. The cliques. Remembering you are an adult, and not becoming the ring leaders next target just from being yourself, keep on with your head held high, and know that not everyone wants to be your friend just because of the 'similarities of circumstances'.
I can guarantee though that you will meet some amazing women. The kind of woman that has an inner strength of a thousand World's Strongest Men, the ability to see the lighter side of life, the humour to make others smile on a down day, and who multi-tasks beyond belief - and usually all before 11am!
Hold those friendships close. Even the most positive mother will have some dark days. She will be relying on her close friends to be there for her, even if she is trying her hardest to hide that fact.
The world of special needs is always easier when you have someone else living there too.
Friday, 19 July 2013
Change the outlook, change the attitude, change the future
Over the last few decades society has been forced to look at and accept that people with mental disabilities do exist.
These people can either have their disability from birth (whether it was noted at birth or later on in childhood when milestones were not being met) or acquire it through illness or accident.
What did our ancestors do with their offspring who presented with a learning difficulty? For some they had them put in a mental institution, perhaps from a very young age, and others kept them under house arrest, away from prying eyes and gossips.
These children, teenagers, and adults were not integrated into society for fear of the response of others. A lack of understanding, embarrassment, and accusations of blame were more than likely levelled to these families, and so to keep their social standing, these children and adults were hidden away.
There are many reports that those mental institutions were harsh and unkind to their residents, with beatings, painful 'human guinea pig' tests, and uncaring staff making the lives of those people even more of a struggle.
Quite how we as human beings thought it just and right to be so cruel and hurtful to people with special needs is beyond me.
But then there is always the fear of the unknown, and fear breeds hostility and resentment, and human beings can turn on each other for the slightest thing.
Thankfully my generation is learning about it all, and that no matter what the disability, we are all human, we all breath the same air, we all have blood pumping through our veins, and we all deserve to live a life without prejudice, pain, or contempt.
But, even though the majority is now aware of disabilities, it does not stop the stares and the judgment from a certain sector of people.
Steps still need to be implemented or improved upon in cracking down on those in society who thrive on bullying those more vulnerable. Police need to wake up and do the job they took the oath on, instead of side stepping their duties, as was seen in a recent case in the press. Judges and the CPS need to wake up to the realisation that harassment, bullying and intimidation upon those in society that need more protection can only be achieved by having a hard and strong line that prosecutes and punishes (not with a measly community service order) and shows others thinking of following in their peers footsteps, that it is not acceptable and it will not be tolerated.
If we don't continue to push forward, expose the reality, punish those who bully and intimidate, improve the services that provide care, respite and advice, and shout loudly and proudly that having a child with a disability is in no way a bad thing then we will not continue this journey out of the dark ages where we one day will see equality and social freedom ( from prejudice and hate) being the norm.
I originally posted this blog entry back in October 2010, but feel it warrants another airing, especially in light of the whole sorry saga of Collin Brewer.
These people can either have their disability from birth (whether it was noted at birth or later on in childhood when milestones were not being met) or acquire it through illness or accident.
What did our ancestors do with their offspring who presented with a learning difficulty? For some they had them put in a mental institution, perhaps from a very young age, and others kept them under house arrest, away from prying eyes and gossips.
These children, teenagers, and adults were not integrated into society for fear of the response of others. A lack of understanding, embarrassment, and accusations of blame were more than likely levelled to these families, and so to keep their social standing, these children and adults were hidden away.
There are many reports that those mental institutions were harsh and unkind to their residents, with beatings, painful 'human guinea pig' tests, and uncaring staff making the lives of those people even more of a struggle.
Quite how we as human beings thought it just and right to be so cruel and hurtful to people with special needs is beyond me.
But then there is always the fear of the unknown, and fear breeds hostility and resentment, and human beings can turn on each other for the slightest thing.
Thankfully my generation is learning about it all, and that no matter what the disability, we are all human, we all breath the same air, we all have blood pumping through our veins, and we all deserve to live a life without prejudice, pain, or contempt.
But, even though the majority is now aware of disabilities, it does not stop the stares and the judgment from a certain sector of people.
Steps still need to be implemented or improved upon in cracking down on those in society who thrive on bullying those more vulnerable. Police need to wake up and do the job they took the oath on, instead of side stepping their duties, as was seen in a recent case in the press. Judges and the CPS need to wake up to the realisation that harassment, bullying and intimidation upon those in society that need more protection can only be achieved by having a hard and strong line that prosecutes and punishes (not with a measly community service order) and shows others thinking of following in their peers footsteps, that it is not acceptable and it will not be tolerated.
If we don't continue to push forward, expose the reality, punish those who bully and intimidate, improve the services that provide care, respite and advice, and shout loudly and proudly that having a child with a disability is in no way a bad thing then we will not continue this journey out of the dark ages where we one day will see equality and social freedom ( from prejudice and hate) being the norm.
I originally posted this blog entry back in October 2010, but feel it warrants another airing, especially in light of the whole sorry saga of Collin Brewer.
The New School Looms Ever Closer
I was doing okay. I managed to get through J's Leavers Assembly with no tears.
I felt I was 'there', ready and accepting that he is moving up to secondary school.
Last night I went along to a parents evening introduction at the new school. It was a chance to meet the teachers, and learn about how the curriculum is tailored towards the individual special needs of the children.
I had an in depth chat with the art teacher, and am extremely pleased that they have art club at lunch break. I imparted my hope of J being given lots of opportunities to explore different art mediums, and to develop his expression from within his silent world.
The art teacher even recognised our unusual family surname and linked it to a famous artist - distant relation. That impressed me!
As J's grandfather was a talented artist as well, more modern art than traditional, I do wonder if the talent has passed through the genes.
As I drove home from the meeting, I began to feel sad. Sad that my little boy is now a young man. I did however stop the maudlin and take myself back to the positive mum I like being. I presumed that was my wobble and it had passed.....
Today however, J came home with a goody bag. It had a certificate of his 'graduation' from his primary school, some photos, a memento t shirt, and a lovely black, leather bound autograph book, embossed with the school name, on the front.
Inside, the pages were filled with messages, and good lucks, for him, from the staff. All were so lovely, and many incredibly poignant.
And that was it. That's what finally brought the tears.
My Boy has made such an impression at that school. The close knit, loving environment he has been cosseted within, is no more.
I know he needs to move up, to be given more challenges and experiences. But it is so sad for me. Not for him though ; He will adapt so quickly, and settle well, that I trust.
He is growing up.
A new chapter will begin. And of course I shall be blogging all about it!
I felt I was 'there', ready and accepting that he is moving up to secondary school.
Last night I went along to a parents evening introduction at the new school. It was a chance to meet the teachers, and learn about how the curriculum is tailored towards the individual special needs of the children.
I had an in depth chat with the art teacher, and am extremely pleased that they have art club at lunch break. I imparted my hope of J being given lots of opportunities to explore different art mediums, and to develop his expression from within his silent world.
The art teacher even recognised our unusual family surname and linked it to a famous artist - distant relation. That impressed me!
As J's grandfather was a talented artist as well, more modern art than traditional, I do wonder if the talent has passed through the genes.
As I drove home from the meeting, I began to feel sad. Sad that my little boy is now a young man. I did however stop the maudlin and take myself back to the positive mum I like being. I presumed that was my wobble and it had passed.....
Today however, J came home with a goody bag. It had a certificate of his 'graduation' from his primary school, some photos, a memento t shirt, and a lovely black, leather bound autograph book, embossed with the school name, on the front.
Inside, the pages were filled with messages, and good lucks, for him, from the staff. All were so lovely, and many incredibly poignant.
And that was it. That's what finally brought the tears.
My Boy has made such an impression at that school. The close knit, loving environment he has been cosseted within, is no more.
I know he needs to move up, to be given more challenges and experiences. But it is so sad for me. Not for him though ; He will adapt so quickly, and settle well, that I trust.
He is growing up.
A new chapter will begin. And of course I shall be blogging all about it!
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