Sleep and the Full Moon

There is a strange noise surrounding the UK tonight. It's kind of a humming, buzzing, flapping, screeching, laughing, fidgeting noise.

The cause? The Full Moon.

If I didn't have a Moon calendar on my iPhone app, which alerts me to the stages of the Moon, I would still be able to tell - and no, not by looking up at the night sky!

A day or so before, the Boys become a lot more restless, with more unsettled behaviours. J is the worst affected, and it almost seems to 'hurt' him, by the expressions he shows. 

He also gets easily distressed over minor things that on a day with no Full Moon, he would let it pass him fairly quickly.

He has had some melatonin tonight to help relax him and enable him to sleep.

I can still vividly recall life before melatonin.

I have written about my battle to get it prescribed here in the UK, as it is not available in shops, unlike in the US.

On a Full Moon prior to melatonin, J would be up until around 1 - 2am, pacing, head banging, using repetitive phrases, trying to break things, hitting himself..... It was awful to see him going through it.

He would make a low groaning kind of noise as he head banged against the skirting board ( whilst lying on the top step of the staircase.)

At least now I can administer him something that gives him the boost he needs to get off to sleep.

He's all wrapped up inside his bed cover. He folds it around himself, cocooning his body securely. He even covers his head - I couldn't get to sleep or stay asleep like that, but he prefers it. He feels enveloped I suppose, and his body supported. 

I have been told about 'weighted blankets', that some children and adults with autism like to use. They are so expensive though.

One day I will purchase him one, as I believe he will gain a lot of sensory pleasure from it, and it may help him feel even more secure.

I continue to try to do my best for him, as his world, to me, seems very scary and lonely, and despite him not being able to communicate to me his feelings ( apart from me knowing by his noises if he is happy/sad/in pain etc), I want him to always feel I will understand him and help him.

Small Steps are Big Steps to Us.

It's true what they say ; the biggest steps can seem so small to others.

When J gives me a smile, it still means a lot. Smiles are very rare from him, when directed at a person. He does smile at many things, but to look me in the eyes and smile, that is a connection from him to me.

His youngest brother, W, 3 years old, who has congenital nystagmus,  has only just started to attempt to say his own name. Because of the 'sweeping' effect of nystagmus, W is unable to focus on mouth shapes and how they change for different letter sounds. His general speech has come on massively over the last 6 weeks, with sentences, structure, and thought going into what he says. He has refused to say his name whenever asked. He refers to himself as 'Me'. So if asked what his name is, he replies "Me". I randomly asked him the other day, and he shocked me with his reply. It was not anywhere near what a stranger would perceive to be his name, or understand him, but he tried, and he did it, albeit not sound perfect. I recorded him, and sent the clip to family and friends. I am so proud of him.

J surprised me a few weeks back, when he replied to a question I asked.
I always talk to J as I do to my other children. In my eyes he is no different to them, they are equally a part of me. When he is hovering around me, I chat to him.  I never get a response, apart from echolalia.
In the kitchen one evening, he was making his toast whilst I monitored him. That day he had been awarded a 'Silver Coin' at school for his excellent math work in class. The school sing two songs at the start of the special assembly, but the staff member that let me in to the hall was late, so I had missed the first song.
I do love to join in with the songs, as the children are just so beautiful in their efforts of singing and clapping - again something that many parents take for granted, but to us special mums it means a great deal every single time.
In the kitchen I asked him what the other song they sing was called. I had already named the first one. He replied with its full title, and then sang it for me. Yes, okay, it was probably just because I had already said the other song name, so it was just him saying the name of the one I asked about.
But, this is the first time he has ever responded to my question. He has never spoken to me, just at me when trying to request something he wants.
I texted family and friends again to tell them. They understand the great significance of these small steps to me and are equally happy and proud of J.

I love to hear about other special children, and their achievements both big and small.
We know how hard it can be for some children to do what is perceived as something perfunctory by others, so when they overcome an obstacle, or make progress, we all praise, we all cheer, and we feel the glow and happiness from that child's proud parents.
We can find beauty in even the smallest of things.

Repetitive Phrases

There are some days when J seems to spend it repeating the same short sentences over and again.
Today has been a pretty repetitive one, and it does make me very mentally tired from it.
For some parts of the day I knew the reason for his phrases, and despite me understanding, he was not going to get his own way. He wanted to gorge on his new passion, Weetabix Weetos cereal. It is very hard to get him out of his circular emotions, and distraction techniques are never usually a solution.

Since 7am I have been verbally battered with sentences such as

• "one tissue, one wipe"
• "goodbye baby"
• "one tissue, toilet"
• "tunny" - no idea what this word means
• "chocolate cereal, come on then"
• "Tessie Bear"
• "Hello Luna, Hello Bear"

I do try to remove and reduce stresses to J. But sometimes I cannot allow him his own way, and it is hard for the both of us, as well as his brothers.

Collin Brewer compared disabled children to runt lambs

Collin Brewer has been at it again. Not really a surprise to me, after his previous show of ignorance, arrogance, and obstinance.
Comparing disabled children to lambs that are 'runts' that get 'smashed against the wall to kill them'

By Mark Duell -

Councillor Collin Brewer who said disabled children should be ‘put down’ sparked further controversy today by comparing them to deformed lambs who need to be culled.
Cornwall Council veteran member Collin Brewer said children with disabilities should only be allowed to live after the cost has been evaluated - much like farmers who kill the runt of the litter.
Independent Mr Brewer stood down earlier this year after he claimed disabled children could be put to death to save taxpayers’ money.
He now faces fresh calls to permanently step down after making more outrageous comments, saying ‘there may be a case’ for treating disabled children like deformed livestock.
He told the Disability News Service that runt lambs are often put down by farmers who deal with them by ‘smashing them against a wall’.
He said: ‘If they [farmers] have a misshapen lamb, they get rid of it. They get rid of it. Bang.’

Mr Brewer said he discussed his previous statements about putting disabled children down with a farmer from his Wadebridge East constituency. He claimed the farmer made it clear he ‘didn’t see a lot wrong with what I said, because it is something they do every day’.
He added: ‘We are just animals. He obviously has got a point - you can’t have lambs running around with five legs and two heads. It would be put down, smashed against the wall and be dealt with.'  

                                                    Collin Brewer

When asked if he believed there was not much difference between putting down a lamb and a child with two heads, he said: ‘I think the cost has got to be evaluated.
'It is not something I would like to do but there is only so much in the bucket. If you are talking about giving services to the community or services to the individual, the balance has got to be struck.’
Asked if he believed it might be kinder to kill a child with two heads, he said: ‘Is that one child or two?
‘I would hope that, although I don’t like the idea of it, long before it is born that this problem is [dealt with] and it will probably be aborted in some way.’
And when questioned if a child with a similar impairment should be killed after birth, he said: ‘That would be up to the decision of whoever is there at the birth.

Asked whether there was a good argument for killing some disabled children with high support needs to save money, he said: ‘Yes. That is why I keep as far away from health in the council as I can.
'There may be a case. I haven’t a clue how much they cost.’

A spokesman for Disability Cornwall said: ‘It’s particularly frightening these views may be held by those who have the positions and power to make life and death decisions.
‘It’s a sad indictment of our so-called civilised society that disabled children are increasingly discussed within the context of affordability, as if they are goods on a shelf that can be picked up and discarded at will.

You may believe he is right in his opinion. You may feel he has a point.
From my belief that everyone has a right to life, and no-one has the right to take that from them, you can see why I find his continued comments disgusting.

ASD Children See Movement Twice as Fast

There is a new claim that children with autism see movement twice as fast.
This could explain why some do not like bright light or loud noises.
I remember being told that J would never like those strip lights, the ones that have a tendency to flicker, or the energy saving bulbs that have a different light output. He has actually never had any aversion to lights, and even sleeps with his bedroom light on. If I switch it off and he is not fully asleep, he will turn it back on. Because of this, I only use the energy saving bulbs in his room so that I am not replacing them every other week.


The following text is written by Rachel Reilly :

Children with autism see simple movement twice as quickly as other children their age, according to a new study.
Scientists think this this hypersensitivity to motion may provide clues to what causes the disorder.
The findings may explain why some people suffering with autism are sensitive to bright lights and loud noises.
‘We think of autism as a social disorder because children with this condition often struggle with social interactions, but what we sometimes neglect is that almost everything we know about the world comes from our senses.
'Abnormalities in how a person sees or hears can have a profound effect on social communication,' says Duje Tadin, one of the lead authors on the study and an assistant professor of brain and cognitive sciences at the University of Rochester.

Although previous studies have found that people with autism possess enhanced visual abilities with still images, this is the first research to discover a heightened awareness of motion.
The findings were reported in the Journal of Neuroscience by Tadin, co-lead author Jennifer Foss-Feig, a postdoctoral fellow at the Child Study Centre at Yale University, and colleagues at Vanderbilt University.
In the study, 20 children with autism and 26 typically-developing children, all aged 8 to 17, viewed brief video clips of moving black and white bars.
They were asked to indicate which direction the bars were heading, right or left. 
Each time a participant chose the correct direction, the next video clip became slightly shorter and so a little more difficult.

When a child made a mistake, the next video became a bit longer and thus easier to see. In this way, the researchers were able to measure how quickly children with autism can perceive motion. 
The researchers found that when the bars in the image were just barely visible, both groups of children performed identically. When the contrast or darkness of the bars was increased all participants in the study got better at perceiving the direction of movement. 
‘But kids with autism, got much, much better—performing twice as well as their peers,’ says Foss-Feig. 

In fact, the worst performing participant with autism was roughly equal to the average of the participants without autism. 
‘This dramatically enhanced ability to [see] motion is a hint that the brains of individuals with autism keep responding more and more as intensity increases. 
The scientist says that while this could be seen as an advantage, in most circumstances the heightened sense could cause sensory overload.
Such hypersensitive perception is the neural signature for a brain that is unable to dampen its response to sensory information, note the authors. 
This same increase in brain ‘excitability’ is also found in epilepsy, which is strongly linked to autism. 

In fact, as many as one third of individuals with autism also have epilepsy. Normally, the brain puts the brakes on its responses to sound, taste, touch, and other stimuli when they become too intense.
The research builds on earlier findings that people with autism process visual stimuli differently.
For example, previous studies have shown that people with autism are better able to perceive basic patterns, are able to see simple line images more quickly, and are more focused on details than those without the condition.
In contrast, in more complex tasks, like facial recognition, these enhancements become impairments  

J is more sensitive to noise. He will put his hands up to his ears to block noise, and I take that as a sign to reduce the cause of the noise and help him feel comfortable. This includes not taking him to many shops. He can cope with shops he has become used to, but new places are a source of anxiety for him, and he displays anti sociable behaviours such as loud and forced burps, nose picking, random shouted out words, and an excessive laugh that is more of a cackle.

With his ability to be more sensitive to noise, it is not always a negative feeling to him. It enables him to hear a chocolate bar wrapper being opened in another room, with both doors shut, whilst a pillow is used to muffle the sound. His superpower if you like!

Peaceful demonstration against Collin Brewer's re-election

The Collin Brewer furore is still not abating, and rightly so.

An article in the local news for the people of Cornwall, 'This is Cornwall',  has been written. It follows a peaceful demonstration from parents of children with disabilities.

The following text and picture has been kindly taken from This is Cornwall's web page.

Writer - WB Miles

Furious parents of disabled children confronted Cornwall Council representatives this morning at County Hall in the ongoing controversy over Collin Brewer.

Mr Brewer had previously stood down following a massive public backlash over his comment that disabled children "should be put down".

But he was re-elected to Cornwall Council last week in a shock result at the local elections. Parents were due to meet Mr Brewer this morning but Mr Brewer did not attend County Hall today.
Members of the Parent Carer Council confronted other councillors at the entrance to County Hall. One woman said: "He reckons my child should be put down and I think councillor Brewer should be strung up."

A crowd of approximately 80 people had gathered at County Hall to voice their opposition to Mr Brewer being allowed to continue as a councillor.

Bob Egerton, the stand alone Independent member for Probus, Tregony and Grampound, set out the situation facing councillors.
He said: "He was not disqualified from standing again. The people of Wadebridge East voted him in - that is democracy."

Mr Egerton added: "It's not for us then to look at our fellow members and say you don't deserve to be here."
Following this morning's protest a statement was issued by The Parent Carer Council for Cornwall, Disability Cornwall and Isles of Scilly, Cornwall People First, National Autistic Society West Cornwall Branch and Cornwall Downs Syndrome Support Group.

The statement said: "We would like to thank everyone who has supported us and the 80 people who turned out at County Hall today to join our peaceful protest. We also thank the leaders of the Council’s political parties who came out to speak to protesters and share their own concerns with us.
"Unfortunately, despite Cornwall Council’s efforts to set up a meeting between the Parent Carer Council, Disability Cornwall and Cllr Brewer, it did not go ahead due to the fact he has been ‘signed off sick’. We look forward to rescheduling this meeting at the earliest opportunity.

"Since Cllr Brewer’s re-election to Wadebridge East, we have heard from many people in that area who are mortified by this result. We believe and many people have told us, Brewer is not representative of Wadebridge or of Cornwall. His comment was not made as a ‘Cornish Joke’, to ‘provoke debate’ or as a ‘wind up’ and despite his protestations that he has ‘done nothing wrong’; he is now just adding insult to injury. This man has caused immense upset and distress to many good citizens in Cornwall and across the world.

"Brewers’ triumphant statement upon his re-election; “The media has actually done me the power of good – they have promoted me and I’m well known” confirms what we already knew, that he has no remorse or understanding of the hurt he has caused and he is not fit to hold public office.
"His re-election sends entirely the wrong message to the people of Cornwall at a time when disabled people are experiencing increasing intolerance and abuse in their communities.


"We have no option but to accept the democratic process however flawed it may seem in this case, but we ask again that Cllr Brewer re-consider his position and find alternative ways to make a contribution to his community. Let’s not forget, if the complaints process itself was fit for purpose in the first place, and a more appropriate sanction applied, Collin Brewer would probably never have had the chance to stand for re-election.
"It is clear we need to work together harder than ever to create a culture of zero tolerance to ignorance and hatred in all its forms, so everyone in Cornwall is able to fulfil their potential and to live full and active lives as equal and respected members in their communities."


Read the article Here on their web page.

When people make poor errors of judgement, or let their mouth run away before engaging their brain, they are usually apologetic after being pulled up on it. Time tells as to whether their apology was genuine.
When you continue to hear remarks from Mr Brewer, well after the fact, you can draw conclusions that he does not regret what he said, only that he said it to the wrong person, one that would not find it funny, or in agreement.

"The media has actually done me the power of good – they have promoted me and I’m well known”.

Does that comment from him show a man full of remorse for his vile rant? Does it show a man wanting to make amends? Or does it show a man, with an enormous ego, happy that he has certain people in favour of his belief in killing children with disabilities, and although he tried to smooth it all over with a weak apology, of sorts, he is actually in need of some moral guidance.
We all live on this Earth. We all share the same air.
Believing in the killing of the disabled is a throw back to days gone by, days where men and women fought to keep us free from these tyrannical men. Men that wanted anyone different from them dead.
It was not a harmless remark he made. It was not an accident. He was angry. He spilt his bile of hatred out, and got caught. It is as simple as that.

Here's something I made earlier......

 

 

 

 

 

 

Collin Brewer re-elected after his claim disabled children should be 'put down'

I wrote a post a while back about Collin Brewer, a councillor from Cornwall, England.
He was the man that said disabled children should be put down.
This is my original post here, where you can read the whole story about his vile outburst.

I have read today that he has been re-elected. A man that, in anger, made that repugnant and shameful statement. Claiming children with disabilities should be killed - but still voted by the people of the Wadebridge, East Ward.

 

Emma Harrison, a spokesperson for Mencap has said :

“It is horrifying that someone who has said such extreme and entirely unacceptable things could be elected to public office.
We welcomed the criticism he got for this view, and the fact that he said sorry, but we will be watching to see what he will do to actively help people with learning disabilities and their families. Actions speak louder than apologies!"

Time will tell as to whether he will prove himself to be a reformed character of morality and decency. I hope for the future of our society, where changes to attitudes still need a lot of work, he does as his promise.

Birth weight an indicator of autism?

Another study has emerged, where the results of their research point to the birth weight of your baby potentially being a marker for autism.

According to Professor Kathryn Abel -

There is a 60 per cent increased threat of the condition in infants who were 10lb or more at birth.
A similar increase in risk for babies with low birth-weight because their growth in the womb was poor was also recorded.

The study provides the strongest evidence so far that the danger of autism is greater in babies whose growth in the womb was either poor or excessive.

Researchers believe a poorly functioning placenta may lead to abnormalities of growth in the baby’s body and brain.
She said: ‘Foetal growth is influenced by genetic and non-genetic factors. We have shown for the first time categorically that abnormal foetal growth in both directions increases risk of autism spectrum disorder.’

Researchers looked at data from the Stockholm Youth Cohort. This is a Swedish database of health records of thousands of children aged up to 17 between 2001 and 2007.

Early ultrasound dating provides detailed weights as a baby grows during pregnancy. Infants and children are later given clinical assessments of their social, motor, language and cognitive abilities.
Altogether 40,000 health records were assessed. Researchers found 4,283 young people with autism and compared outcomes with 36,588 who did not have the condition.
The study found that bigger babies born weighing more than 9lb 14oz (4.5kg) showed a higher incidence of autism, as did smaller infants born weighing less than 5lb 7oz  (2.5kg).
A baby who had poor foetal growth had a 63 per cent greater risk of developing autism compared to babies who grew normally. A baby who was large at birth had a 60 per cent greater risk.
This effect was independent of whether the baby was born prematurely, or after the expected date of delivery, says a report in The American Journal of Psychiatry.
Professor Abel said: ‘We think this increase in risk associated with extreme abnormal growth of the foetus shows that something is going wrong during development, possibly with the function of the placenta


‘Anything which encourages abnormalities of development and growth is likely to also affect development of the baby’s brain.
‘Risk appeared particularly high in those babies where they were growing poorly and continued in utero until after 40 weeks. This may be because they were exposed the longest to unhealthy conditions within the womb. We need more research into foetal growth, how it is controlled by the placenta and how this affects how the brain develops.’



My three boys were varied in birth weights - J was 8lbs 4ozs, O weighed 10lbs 8ozs, and W weighed in at 8lbs 7ozs. Although J is the one with the significant learning difficulties and autism, he does not fit in with this study. O with his birth weight is more of a candidate, but he is neuro typical, or 'normal' in Layman's terms.

What is apparent to me is the last paragraph 'exposed to the longest unhealthy conditions within the womb'. This pertains to me my theory of high levels of mercury in my system, due to my tuna fish obsession when pregnant with him. This was back when there were no restriction on the consumption of tuna fish in pregnancy. I had no warnings of the danger of mercury levels in tuna at that time. It was only when I became pregnant with O four years later that guidelines had been introduced. I avoided it during my pregnancy with O, and with W.
Again the time frame between O and W had made the tuna restriction even more definitive.
Mercury has been linked with brain function and learning difficulties.

The study performed by Professor Abel is another step forward. It is not a miracle finding, but there does seem to be an interesting link which I know will be studied deeper.