Friday, 16 December 2011

Party time and fore-warning my guests!

I had the house re-decorated this week. Painting over all the drawings and gouging that J has done over the last year.
The night after the staircase wall was painted (and all the smear marks,  pen marks, glue marks, gloop mixture from his concoctions marks) were gone, and it looked fab, he walked down and dragged more gloop mixture he had created from the dregs of shampoo in an 'empty' bottle from the bin, toilet paper, and milk.
The fireplace was painted in white again in the morning and was slightly tacky to touch by the time it was after school, but I thought we were okay. But no. J was caught lying on his back on the table, feet touching the paint on the fireplace and making dirty footprints all over it. As it is tacky to touch I can't clean it and I can't paint over it yet, so the big party tomorrow at my house will have a full list of things my guests have to watch out for -

Be warned these things could happen to you at my house! -

  • J is still spitting - he spat in my face today as I collected him off the school bus and then he laughed and sniggered at me.
  • J will steal fizzy drinks. He will guzzle litres of the stuff if allowed to. He will steal from your cup.
  • J will laugh manically in your face like a cackling hyena. He is trying to get a response.
  • J touches his bottom and genitals all the time.
  • J picks and sticks his fingers in his mouth.
  • J will sniff your food and then wretch if he doesn't like it - most foods!
  • J wees all over the seat and floor again like he did a while ago as he is back to standing for a wee.
  • J will come up to you and babble and expect you to repeat it to satisfy his sensory issue.
  • J will take his trousers down and stand naked in front of you.

I think preparing people for what could happen will help them to cope when he is in full force melt down or just full force daily manic behaviours.

The melt downs and manic behaviours are just awful at the moment. Everyday he is hyper and coupled with his severe learning difficulties and lack of meaningful speech it is a very tough time for me, his two brothers, the labradors and the house.

Saturday, 26 November 2011

Unwanted hand gestures

J has a very funny little habit that causes me to worry.
He sits in the very back of my car - I have a 7 seater.
When I am driving I have noticed he hand flaps a bit, arm wiggles and generally looks as if he is doing rude 'signs' to other drivers!
I am now on alert and constantly telling him to put his arms down.
Tha last thing I need is some testosterone fuelled road rager thinking my car is annoyed with him/her and takes it upon themselves to turn on me.
A lot of people will realise it is not an adult sitting there and may pass it off without much thought or care, but I have witnessed a child of about 4 giving one of the more popular hand signals in this country (make a kind of fist and move left to right) to a motor bike rider who dared to be in the way of this 4 years old fathers white van that almost hit him as he pulled out of a side road in front of him. The bike rider was narrowly missed by the careless van driver, but instead of the van driver apologising, his 4 year old gives the hand gesture! And to top it off, the front of the van had a female passenger and two other children in it, all with no seatbelts on and the 4 year old almost hit his head on the dashboard! The slang term 'chav' sums up that van and it's occupiers quite well really!

Friday, 25 November 2011

Catching up

It has been a while since I blogged, but I have been ill after an operation and have felt very low and tired. Caring for the children and trying to get through the pain have been my main priority.

I have found out that I can get my own GP to refer for an ADHD assessment. Whether that will be anytime in the next 5 years who knows, but at least I am in control of something, and not just having no choice but to leave it all to others, hoping they get a hurry on and sort it for me.

The melatonin is still working its magic.
I still keep the dosage on the low side as I don't feel he needs the full 6ml prescribed.
He has taken to sleeping back on the top of the stairs again. Curled up and sleeping away.

Head banging is still in full force. "Banginy head" is what he says now just before he does it and then "no banginy head" after. Or "you're welcome". Learned phrases.

He drew this picture the other week. I did'nt take much notice of the detail until someone pointed out the tears on the faces. It was then I realised the "sad face" noises J had been doing ( full on boo hoo hoo crying -very dramatic but just that, drama. He was doing it for fun.) were being copied into drawings by him. I think he has been learning emotions at school hence all this "ahuh ahuh ahuh" noises and the put out bottom lip.





 

Wednesday, 9 November 2011

Cuebunger anyone? Oh and the results are in.

Cuebunger. That is what J has been requesting this week. He means cucumber.
So we are up to him eating peas, carrots, a little bit of sweetcorn when it is corn on the cob and not tinned and cuebunger.

I have all the results back from the genetic tests and he has 'passed' them.
I thought that would be the end of it, but we have been asked, as most parents who have been through the same are asked, to join a genetic programme that swabs your saliva and stores it in a huge database of other children 'without diagnosis' and test it for either really really rare genetic conditions which were not tested for before or look for new ones which have yet to be found.
I have been told a diagnosis can take up to a year to come through, and even then it may be years before they find it if it is going to be a 'new' one.

I have joined SWAN - Syndromes Without A Name.

The geneticist is adament he has a genetic condition and she was really surprised he did not have SMS.

So even though J has the autistic label, it is presumed he has an undiagnosed syndrome that as with a lot of learning difficulty disorders, is similar to autism and its traits, and so it is easier to give the label so that we can then qualify for help.

Sunday, 30 October 2011

Stress and upset

What a funny week we have had.
We went away again to the holiday home and it was very eventful.
From what happened I am going to investigate as to how I go about having an ADHD assesment carried out on J.
It has come to the point where I can no longer just use the excuse that autism has this huge 'umbrella' of traits and that his manic behaviours and wild antics are a part of that. I do believe he has ADHD as well.
The whole of the half term was filled with him shouting his phrases out, head banging everything and anything (such as when we were on a walk he would stop, kneel on the ground and head bang that), picking his bottom so much that he stank and his clothes stank and I was having to shower him  several times a day and change his clothes. When he bottom picks he then sticks his fingers up his nose, in his mouth and wipes it over his clothes.
Stealing food and gorging to excess (the holiday home has an open plan kitchen so I am unable to lock everything away).
We had a rather bad experience in Sainsburys as well.
He was flapping, head banging the till counter, spitting at the conveyor belt, picking his nose and putting his fingers straight in his mouth, yelling for food he wanted and basically making it so awful for all of us.
He was behaving this badly because he had people staring at him and commenting.
When he was only hand flapping he was fairly calm, but then the stares started, and contrary to what I have said before in this blog, I now believe he is aware that people are staring at him even if he does not make it known that he acknowledges it as such.
I have noticed lately that when there are strange people around, he begins to really over act in his behaviours, as if he is back lashing against society and their expectations.

To break slightly, as I was typing the above, J head banged one of the glass panes in the door that leads from the playroom into the third room/extension downstairs. I have just spent 20 minutes cleaning up the shards from the floor and cardboard and taping up the hole left by the broken glass. This now takes this door to two broken panes (he did the first one a while ago which I blogged about) and two cereal box coverings both from J and his headbanging.
I am waiting to have the panes replaced so am having to live with the look of shabbyness.

So, back to the orininal reason for this blog...

The people in Sainsburys were rude and so nasty. The three men queuing behind us could not be bothered to look elsewhere and so choose to continue to stare.
The father and his three precious princesses who were fresh from horse riding with their jodpurs, boots and mud stained logo emblazoned sweat tops, were opposite us on the next till.
Princess number 1 and princess number 2 just stared. Stared and stared. Now these two girls were definately in their teens, so not young enough to not know better.
Princess number 3 looked but sneakily. And the father? Well he stared from his pot bellied frame and did'nt attempt to reign in his staring daughters.
The till lady was giving a tortoise a run for his money in her skills at speed and efficency.
She knew full what was going on, but took it upon herself to scan each item as if it were a bomb about to detonate unless carefully passed through the scanner.
It was bloody awful. It made me realise that I actually do hate a lot of society. Nasty, judgemental idiots.

And now on to Ricky Gervais from my previous blog entry.
He has now apologised. There have been many eloquent blogs about this man and his 'mong' abuse and my entry pales into insignificance when I read those, but my point was made, albeit short and succint.
Sadly the 'mong' abuse from those in society that never used it before, but now think it highly amusing will continue. Continue until they latch on to some other campaign of abuse via the internet, where they can keep themselves safe behind their phone/laptop/computer screen and keep their vitriol up to mass proportions.

UPDATE.....
A few hours after posting this, J head banged again and smashed another pane of glass. So three in total now. It is really really getting me down.

Thursday, 20 October 2011

Skin picking, head banging and that Ricky Gervais story

J has started skin picking on his arms. Little patches have started appearing where his nails have dug in and caused the skin to break and bleed.
I have a battle to keep his nails short, which results in him screaming at me and trying to push me away with all of his large 9 year old frame (and those that know him will understand he is very strong). Somehow he is still able to pick at his skin but I am sure it is not through him biting as the marks are too small.

The head banging is also everyday now. Several episodes every afternoon and evening that result in the whole family becoming stressed as it is impacting now on W who is 20 months old now and wonders what the heck is going on.

He is still asking for and eating his peas and carrots and I even got him to eat scrambled egg the other day! He has'nt touched that since he was about two years old.


On a different subject there has been a little bit of press about Ricky Gervais and his use of the word 'mong' when updating his Twitter statuses.
The comic has refused to apologise after he repeatedly used the word "mong" in jokes and online messages to fans on the social networking site Twitter.


Gervais insisted the meaning of the word has changed over time, saying it is now used to describe an idiot, rather than being a derogatory term for those suffering from the chromosome disorder.
But the funnyman came under fire from disability groups and Down's syndrome campaigners, who said his use of the term was insensitive and distressing.
Gervais, who has more than 440,000 followers on Twitter, used phrases including: "two mongs don't make a right" and "good monging everyone".
He also used the term to describe the thousands of people who lined the streets of London to watch the royal wedding on April 29 this year.

This morning on The Wright Stuff a panel member, Steve Furst (actor/writer/comedian), talked about this during the newspaper section and made a very valid point -  " the more you say it does not mean it is right....he is playing to the gallery, he does enjoy it.....I think it's unnaceptable....he is an intelligent man he should find another word to use... unfortunately jokes about the disabled (and even homophobia) is still accepted".
I took that from a conversation he had with the actor (and Spandau Ballet) Martin Kemp during the debate and Martin Kemp made a valid point also during that bit -  "its a word that used to be used in the playground when I was a kid, but the reason it was okay to use it then was that we did'nt know what it meant, but he's old enough to know what it means"

Wednesday, 12 October 2011

Vegetable Breakthrough!

I am really happy at the moment!
J finally has accepted peas AND carrots as part of his meal!!!!!

The school have been working on him at lunch time (he has a packed lunch from home) by introducing these foods every day. It was'nt working at all until a new dinner lady took over and told him/showed him " you eat these and you can have this" (usually his breadsticks or twiglets). Amazingly it worked and I was having notes left in the home-school book telling me had had tried peas, carrots and sweetcorn (he really hated that though but he still tried it).
Unfortunately it did not work the same at home! He refused point blank and would scream and cry.
This had been going on for over a year before the new lady stepped in, and then it only took a few months for him to do the same at home.

That is until the other day. He had the same meal as his brothers and the same routine of having peas on his plate. But this time, instead of tipping them on the floor he ate them! And then he was saying "peas, peas, peas" and trying to take them off of his brothers plates!!
I gave him some more and he ate them all.
And then......
He asked for "cawwots" and his hand hovered over their plates trying to take them off to eat!
I gave him some and he ate them all!!

Since then he has requested them each meal time (not breakfast though!) and eats them all up!

I know I have used lots of exclaimation marks in this post but I think it is only right!
After all this is the first time in his life he has not only asked for, but eaten vegetables!
A breakthrough at last!

Saturday, 8 October 2011

Eamonn Holmes' double standards!

"Retarded." Uttered by a television presenter on daytime t.v. Used to put down an interviewee on the show who claimed he was not very good at geography after a poll was read out from a newspaper claiming a third of the UK do not know where London,Birmingham or Glasgow is when looking at the map of the UK. "What are you, retarded?"

This is Eamonn Holmes reply on This Morning after complaints were made (and ignore the 'three or four' comment. He is downplaying it to save face)

“Sorry to three or four of you who have got in touch this morning, because I used the word ‘retarded’ during the newspaper review.
“You seem to take it personally or seem to say that I’m insulting all sorts of people who have all sorts of conditions, but obviously I would never want to do that or cause any sort of offence.”

He has taken to to Twitter as well and seem genuinely flabergasted that anyone would have taken offence to the use of the word.
Now I shall not be going off into a long winded post about this but will leave you with this thought -

Eamonn Holmes made a complaint against an impressionist show that had him portrayed as a fat food guzzling man. Take a look at Eamonn and you can see he is not shy of a donut or three and he himself has commented on his food habits being too much. He got very touchy about the impression made of him.

One rule for Eamonn and another for the rest of society eh?!

Sunday, 2 October 2011

J has a new saying. He is repeating over and over again. It sounds quite rude and I cannot figure out where he has heard it.
He says "oooooooo yes oh yes, oooooooooooooooh yes oh yes". Yet another embarrassing little thing he does that people must think has come from our home, but it most definately does not!

He is also back to ear fiddling again and getting distressed about it. He has dug the skin so much in the outer ear that he has made it bleed. I have blogged before about the experience we endured at the Dr surgery when his ear was irritating him. If he needs a more thorough examination we will need several people helping to hold him down and to be frank the nurses at my surgery are of a certain age and look like they need a meal - not a good recipe for a giant 9 year old boy, frightened out of his skin and kicking and head butting around.

I am thinking of making the upstairs family bathroom more like a wetroom as he just loves splashing his bath water everywhere and I now have a bucket positioned in the kitchen below where the water always leaks through a certain point in the ceiling. I want to go fully tiled, not the half tiled half paint (for which he loves to pen his ink drawings on too ). I'm hoping to seal the floor properly and make it much more autism friendly.

The downstairs shower room is also a possibility but it backs on to the utility room and it's more of a guest shower room than a general family bathroom.

As I type this I am watching him wander round the garden with a piece of garden hose held up, one end to his mouth and the other end to his (good) ear. He is muttering his usual ramblings and sayings from childrens television shoes, and looks very happy, enjoying this lovely warm October weather we are experiencing.

Thursday, 29 September 2011

Some results are in

I have had some results back from the blood tests taken nearly 9 weeks ago.
J is clear of diabetes, thyroid disease and high cholesterol.
The first part of his genetic testing has come back clear.
It was explained to me that this test looked for any missing chromosomes and found he has them all present.
I asked if this meant he was clear of SMS and was told that in fact as happens a lot with SMS it is not a missing chromosome (number 17)  but a mutation  of it and so that is what they are still testing for now.
So it looks pretty positive I feel that he does'nt have SMS which is a relief as it means it is not genetic and therefore the other children won't have that hanging over them when the time comes for them to start their own families.
I asked how much longer I would have to wait and was told no more than a few weeks.
I only found this all out by calling the genetics team. I used the pretence of asking a question and then wound it round to asking if any results were back in. A little lie maybe but at least I got some answers!

Friday, 23 September 2011

Cheap entertainment at the cost of a vulnerable adult

How can we as a society ever move with the times and become accepting and understanding of children and adults with autism, mental health problems and other neurological disorders, if a national television show hightlights and pokes fun at an obviously vunerable woman?

The show in question is the X Factor (UK).
A woman appeared on last Saturday nights audtion show and has auditioned previously in 2005, 2006, and 2008.
She does not have a good singing voice. It is in fact very awful.

The show dedicated nearly 8 minutes to her. It showed her giving a bunch of flowers to Louis, one of the judges.
She was mocked by Gary Barlow for her prounounciation of 'Les Miserables', laughed at by  all four judges and used by producers to gain cheap laughs.

It has now come to light that there have been scenes edited from the show which have Gary Barlow going up onto the stage after her audition and rifling through her handbag. He pulls out her passport and mocks that she won't be needing that. The audience booed that - probably why it was edited out.

It is reported that she was approached by the production team to come back and audition.
Why would they do that? We all know she can not sing or hold a note.
Cheap laughs.
Laughing and mocking a woman that clearly has mental health issues.

Of course Simon Cowell's lawyers and press team will move to bury this story as much as possible and there will probably be some 'shock' for the X Factor in the coming weeks that Fleet Street take up and run with whilst forgetting the appaling treatment of a vulnerable human being.

The production team claim the lady in question was happy to go ahead with the audition.
Coercing her I expect.
They did pay for her expenses to travel there and put her up in a nice hotel after approaching her.
They don't do that for all the other auditionees.

Mental health is not to be mocked at. Not to be sneered at. And not to be used for cheap entertainment.

Tuesday, 20 September 2011

Diet cola ban

Still no news on the results for J's genetic tests.
The wait is driving me mad!
The melatonin is still working its miracle even though I am not using it every night on him. He does seem a lot calmer at night with a lot less pacing, muttering, screaming and head banging.
I have also cut out his diet cola.
This is a big thing for him.
Many previous blogs state his "cola cola cola" pleas and I have taken a stand and said no more. If he is to have some it will always be the caffeine and sugar free variety and that is only on special occasions.
Don't get me wrong, he was not drinking bottles of the stuff daily but he did like it and did get it more than an average child. Bad habit I know and one that has stopped.
There is much "cola cola cola" requesting going on but I have not given in.

Friday, 9 September 2011

What a waste of time!

Oh my. It seems most of our experiences and meetings with professional agencies seem to be full of time wasting, mis-information or not suitable.
If you go back over this blog, or are a regular reader and remember various encounters I have blogged about you will see what I am talking about.

Yesterday we finally had the occupational therapist visit. I blogged about this back in late July, about the problems I had when trying to rearrange the appointment sent to us.

Well finally after three years the OT comes and visits us!  Two,nearly three years of 'being at the top of the list'.

The paediatrician and our specialist disability team worker had both independantly written to the OT with their recommendations for us.

I presume these letters and their content were properly read.

Why then however did the OT arrive, and as soon as she sat down did she tell me that she is confused as to why she has come out to see me, as she cannot offer me the help being requested.

Pardon?!

J has to have a physical disability, not a mental disability to start to qualify for the recommendations!

So a wasted appointment for both of us.

OT cannot offer any proper help for us as a family as in her words "you pretty much know what's what and understand the issues of safety".

So I have waited two to three years for that little gem of information.

Considering there is so much need for the OT in the community it surprised me that I was not telephoned about the content of the request, to clarify it with myself, and then saved wasting this appointment which could have been given to someone else who I am sure has also been 'at the top of the list' for several years.
Also consider that the OT only works six hours per week so appointments are few and far between.

The woman then gave me information of a charity that helps with this kind of adaptaion but upon me googling them and reading their criteria, they too only help those with physical disabilities. 

Cue much huffing and puffing from me and another moaning blog!

Thursday, 8 September 2011

Pants(less) Man

Oh the joys of these little quirks that appear for no reason and seem to take an age to abate.

Last term, towards the end, J decided to stop wearing pants.
He would remove them at the weekend and upon arriving back from school.

At sports day his teacher had a quiet word with me. On getting changed into his shorts and tee shirt they realised he had no pants on. She told me he had come to school minus pants.
But I knew he had worn them to school as I still dress him and he had no time to take them off before the school transport arrived as he was with me.
So they checked the next day, as I noted he had come home pantless the day before too.
They found them in a cupboard!

He has spent all the summer holiday removing them every day.
I tried boxer shorts.
He removed them.

He just likes being au naturel it would seem.

Back to school this term and again he has come home for two days minus pants and today holding onto them as I collected him off of the school transport!

So the new teacher has been given a note from me explaining all about Pants (less) Man and his trick of removing them in the toilet and hiding them in a cupboard. Hopefully he will come back with the missing pairs tomorrow!

Saturday, 3 September 2011

The twiddler embarrassment.

Okay embarrassing story time....

The other day I took J to Boots the chemist. We parked in a retail park and only had a short walk to the shop door.

However on that very short walk J managed to do something very embarrassing that got a shocked look from a very yummy mummy and her very expensively dressed daughters.

J has been a nipple twiddler for a few years now.
He favours his left nipple and has made it almost deformed and is permanently enlarged. The GP and the paediatricians are not concerned by it, but it does look odd, and I am always telling him to "let go". He seems to do it with a smirk on his face too, which I do admit makes me cringe.

As far as I am aware he has only confined this behaviour to the home.

But then he goes and does what I will explain next, and it was the single most embarrassing event since he pulled his trousers and pants down to look at his willy and pick his bottom in Burger King right next to a couple eating their meal.

I was pushing the pushchair with W in and J was walking alongside me, behaving and walking very well, or so I thought....
I become aware of this yummy mummy, all tight designer jeans and bedecked in a fine array of jewellery, staring at us.
I look to my right and there is J, tee shirt pulled right up under his chin, nipple twiddling away and smirking.
I half yell half hiss at him to pull his top down, which he does.
But the image of this giant sized 9 year old, playing with his nipple, smirking, will forever be burned into that woman and perhaps her darling daughters minds forever.

So, if the lady in question ever gets  to read this (which is highly unlikely but anyhoo), then I apologise to you and your girls, but these things happen, and I too am hoping it never happens again.

Tuesday, 30 August 2011

An inspiring post written by a friend....

The following is copied here, with permission, from a friend on Facebook whose daughter attends the same school as J. The following words are very true and inspiring.....


There is something magical about Abbeys world. Every now and then you get a glimmer of what lies within. You look into her beautiful blue eyes and are greeted with such amazing kindness and love that for those few moments nothing matters, the sun shines and the air smells sweet.



Watching her spin around, bounce on the trampoline or swing as high as she possible can makes me feel like there is nothing more important in the universe than to feel the happiness she feels. Her need to love and be loved by all people and animals is sometimes overwhelming and can make you feel almost claustrophobic. But what lies at the heart of her strangles and flying arms and legs is just one simple thing. A smile. A smile from you to let her know you see her, let her know you feel the love and kindness within her heart. A smile from her to tell you that you're the most important person to her at that very moment. Why do people have to tut or stare? It takes more effort to form a rude statement, shake their head or raise their eyebrows than it would for them to just accept pure happiness and joy, and just smile back.


She's loud and strong, she eats with her mouth open and hums most of the day. She'll push you to one side if you're not moving fast enough or you're simply in her way, she gets right in front if your face when you're trying to talk to someone. But you know what. The stress you feel when she does these things, the twitch it gives you, having to listen to 'mmmmmmm' all the way through your meal? None of it matters. You need to understand something about Abbey, about all children that are different, 'different, not less'. They will live the rest of their lives hearing the comments you make, feeling the stares across a room, seeing the distaste on your faces and it won't change them, not for a second. They will continue to be happy, they will continue to hum all day and spin and swing and bounce and tap and have little to no social awareness. You can't change someone with your opinion, your comments of 'not normal' or a little click made by your tongue.


If you want to make a difference in someone's life then think about the following things you could do; smile a little when you see them. Say hello when they speak to you, even if they speak with their hands. Wave if they wave. If they are crying give a heartfelt smile to whomever is with them, let them know they don't need to explain themselves or make excuses for their children. Open yourself up to a world that has always existed, used to be hidden but is now open to the world. Read a forum or two on disabled children and the behaviours, health problems, social issues, day to day struggles. Teach yourself to understand. Look beyond the end of your own nose and see the amazing people, young and old that are behind the tantrums and outbursts caused by frustration because they can't just tell you what they want or need.


Or if you can't manage that much and feel it doesn't effect you enough for you to bother with, just stick with the first one on the list. Smile.


It takes less than 2 seconds to change someone's life. Someone that will forever live with people's ignorance, someone who, no matter how rough the tide gets, will always manage to give you 2 seconds of their life to brighten yours.






I hope Abbey can inspire the world some day. That magical smile....it changed my life.




Copyright A.Chapman.


 



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Saturday, 27 August 2011

The clubhouse nightmare

Can you remember previous blog posts where I talk about why I don't take J out to restaurants and venues of large gatherings where food and drink is in plentiful supply?
Well I did a stupid thing the other day, and I took him to a clubhouse, the entertainment place on our holiday home park when it was busy.
He was okay and stayed fairly put where he was at the table, drinking his diet cola.
But after his second glass of drink he was becoming tetchy and wanted to get up and go to the dance floor, where no dancing was occuring, but bingo was being played by the majority of those in the clubhouse, and so quiet was needed.
So in his inimitable style he decided he would make himself sick where he was sitting.
I saw what he was up to and managed to get him outside after only a little had come up. Outside he was laughing hysterically and then made himself vomit enormously, twice.
I was in a dilemma as to what to do. He was hyper and was playing up, but I also had the baby and O with me and I needed to get word to staff inside the building to bring buckets of water to sluice the sick away.
Everyone around me outside were as drunk as Oliver Reed and could'nt offer any help other than open mouthed, slack jawed stares.
I rounded the boys up, went into find help, and left pretty sharpish.
Back at the holiday home he proceeded to try to steal food to gorge on and was manic for several hours.
So that won't be repeated again any time soon!

Sunday, 21 August 2011

Guess who has been sleeping in a bed?!

Two nights now J has slept in a bed!!
The first time in two years!!
He went to sleep in it with no prompting from me and stayed in there, and not back on to the floor, all night. I know this as I slept very lightly again and as I still had the worries running round my head I was up and down and checked on him several times.
The second night when I said it was bedtime he got into bed and even though he was awake for around 30 minutes he stayed where he was and slept until around 5am before transferring to the hall floor.

This is a major breakthrough and I am not sure why he has chosen to start sleeping back in a bed, but it's great that he has.

I know he may well only do this for a short time before going back to his old sleep places and after two years I am so used to him sleeping on the landing or in the hall that it seems kind of odd that he is not in my way anymore and I don't have to step over him!

We are still at the holiday home and the beds here are nowhere near as comfy as the ones at home so I can't identify it as a comfort issue. And we have been coming here for six months or so so it's not a new surrounding that has enticed him into sleeping where sleep is expected to take place.

I can't even say it is the melatonin as I have not given it to him for four nights as I am still wary of him getting used to it and then it not working anymore, and now the full moon has passed he has calmed down a fraction.

I wonder how long he will keep it up for and whether he transfers it to home and his lovely new small double bed I purchased for him a while ago. I hope so!

Saturday, 20 August 2011

Mmmmm Smoothie Time

Would you like a fruit smoothie?
One made by my own J's hands?
Banana it is.
Looks fairly good.

What's in it, I don't hear you ask?

  • Banana.
  • Milk.
  • Sugar
  • and that secret ingredient - butter




Yes that's right -  butter. Lurpak to be precise.

I avoided having to taste test it, but he has mixed it up in a bowl and poured it into a wine glass, popped an old McDonalds straw in, and has slurped it.


Funny how it is now just sitting on the kitchen table in the holiday home just looking pretty and being avoided by all, including the creator, J after his initial taster.
If you do decide to make it for yourself don't blame me for a queasy tummy!




Friday, 19 August 2011

Guilt and Worry

Guilt.
You know that feeling. Not the one when you have eaten more chocolate than Augustus Gloop.
The one you get when you become a mum.
Guilt over how you parent.
Guilt about missed opportunities.
Guilt when you have your first outing sans child.
As if being a mum is'nt hard enough, I have the guilt over J. As blogged before I have mentioned the various potential reasons for his autism. But as there are no real findings yet by the clever boffins as to how/why/when autism occurs it is all just speculation.

But with the genetic tests and the long wait I am fretting and losing sleep.
Why?
Because I am desperate to know whether what he has is genetic and therefore my fault.
He could go from being a statistic of 1 in 4 children with autism to 1 in only 400 children in the whole of the UK. It's a big leap and with it a whole mass of guilt.

I know it may well all come back clear. I am prepared for that.
But it's the niggley doubts and the words of the specialist that he displays all of the traits of SMS.

I am a worrier. It is one of my many faults. I worry until I make myself ill..

I know it will not change anything. I know it is not that long a wait when you look at it objectively. But the guilt is weighing down hard on me. And then I worry about how I will feel if it is positive. Running scenarios through my head at 2am as to my reaction to reading the letter with the results is not helping me, but there is no one to help me at that time of night (or morning whichever way you look at it). No one to listen to my endless chatter and endless worry.

I am sorry for such a negative post this time round, but this blog is my outlet and one place I can natter on without seeing that glazed look in a persons eyes as they switch off and start compiling their shopping list in their head as I witter on.

Positivity will resume shortly.

Saturday, 13 August 2011

Holiday Time

We are on holiday at the moment, down at the holiday home we have.
J has been okay with it all as he is used to the place and knows we are going when I get the big box out at home to pack food and drink to take with us (so I don't have to go straight to the shops when we arrive).

But the last two days have been horrendus with him. Up, down, shouty, screaming, manic laughter, hitting, head banging, stealing food, throwing water over the floors, itchy feet and stamping. And why? That flaming full moon. I knew it had to be before I even checked.

But a positive event that has occured in this holiday is that I allow him to scooter off down the road. And when I say road I do mean it is off road, no main street, only access for holiday home owners and speed bumps and signs of 5 mph only.
He asks for "play time" and I say yes. He grabs his scooter, opens the gate and off he goes with a loud "weeeeeeeeeeeeeee" as I observe him disappear round the corner.
I sit on the veranda and listen to his happy noises as he snakes his way round and back up to our drive.
He adores this freedom so much he is out there until I call him back. He is red faced and sweaty but so very happy. The exercise is doing him good physically too. Just a shame it is not wearing him our mentally and helping him to feel more tired come evening time.

I allowed my middle son to follow him yesterday. Up until then he had only been allowed to go as far as I could see him, but he was desperate to show me his independance so I allowed him to.
After two minutes I followed with the baby and spied them both scootering along merrily, J leading and O following behind. I hid behind trees and cars watching them!  They were having a whale of a time and O was almost sad to see me when I eventually appeared.

The weather has been a typical British summer. Rain and overcast one minute, sun and blue skies the next. We are almost primed ready for the second the last drop of rain falls and as soon as it has we are off out the door, sitting on the veranda playing games such as Lego towers, which involves O and I making Lego skyscrapers, whilst J takes all the dark blue bricks for his tower and W sweeps them away and over the edge of the veranda onto the ground outside, or we grab the outdoor gear and traipse up to the Monument for a dog walk and game of remote control car racing.
 

Monday, 1 August 2011

Magical,Marvellous Melatonin.

Can you hear that?
Those little snores and peaceful sighs.
It is J and he is getting some much needed sleep! Hurrah!!

The wonderful, glorious, marvellous medicine named Melatonin has worked its magic on J and he is now able to drift off to sleep at a reasonable time and refresh his mind and his body.

So why the heck was this medicine so long in being prescribed?
Why did I have to fight tooth and nail to get it?
Why is it deemed acceptable to allow my son to have so little sleep and such a poor quality of sleep for such a long time - over three years.

This medicine is not a sedative. It is not an anti depressent. It is a naturally occuring substance that each and every one of us should produce in our brains, but for children and adults with special needs such as Js their brains do not make enough of this and that means a lack of sleep, a problem in getting to sleep and a fall out of learning and behaviour the following day.
It is a negative cycle perpetuated by not getting enough sleep.

So on night one I gave him the 3ml at around 10pm. 10pm may appear late but I was advised not to give it to him too early as it was a nudge along into allowing him to drift to sleep and too early and he would miss 'the window' and then still be awake at midnight as per usual.
I checked on him at 10.30pm and he was sparko!
He slept all night too.

The next night I administered 3ml at 9.30pm and he was asleep within twenty minutes.

The following night I reduced it from 3ml to 2ml (even though I was told I could increase it to 6ml) and gave it to him at 8pm. He was asleep at 8.30pm and slept right through till 7.30am.

Does this not show that he needed this ages ago?!
Does this not show that the negligence and 'don't care' attitude shown to J and myself by the professionals is awful and wrong?

He has been more alert and more cheery in the daytime too.
Sleep is a necessity that we all need.
When published medical journals state quite clearly that children like J lack the melatonin production required to enable adequate sleep it is almost a closed door attitude from everywhere you go trying to find help for your childs lack of sleep.

I did not give it to him one night to see what would happen.
He was struggling to go to sleep. He was restless. He was sitting there just wondering why he could'nt get to sleep. All the things he has been doing for years. Night after night. Week after week. Month after month.

He needed this. He has to keep having it.
It is vital for his well being and happiness.
To deny a child or adult this, when they so clearly need it, is unacceptable and negligent.
I just hope they do not stop him being prescribed it in the future.

Saturday, 30 July 2011

The Blood Test and Genetics Appointment

Yesterday we had the appointment at the genetics clinic at the main hospital (well the women's unit over the road - they also run clinics for genetics there).
I had my mum in tow to help me with J as I knew he would be a handful and also I wanted to be able to chat to the ladies (there were two geneticists at the appointment) without too much distraction.
We had the first appointment of the clinic session and they had also put us into the adult clinic (hence why we were in the womens hospital) so as to keep any stress to a minimum.
Unfortunately for us the ladies were late arriving for clinic and so when they walked in 20 minutes after our alloted time J was quite hyper and screamy and of course we had the obligatory stares from the old bats waiting at the reception desk to book in.
So when finally called through J was whooping and hand flapping manically.

We talked about his life, milestones, his behaviour, his sleep (or lack of it) and his general health.
After 45 minutes he was calmer but was getting cabin fever. Thankfully he allowed one of them to examine him. And by examine I mean he held his hands out for her to look at and took his socks of for her to view his feet - not a major exam.

Then it was suggested we went over to the main general hospital for the blood tests there and then.
I was happy to try, if a little cautious. I explained we could'nt be left waiting around for ages over there as his patience is not strong (and neither is mine in that situtaion).
They telephoned the specialist unit for children who said they were fairly quiet and to come over and they would slot us in.

So all three of us trotted off over the road.
I was full of uncertainty and doubt.
J was happy that we were going past lots of shops (within the entrance lobby of the hospital) that sold "cola cola cola".

Into the unit and it was indeed quiet. Just two other children waiting with their parents.
Before I had even said who we were the receptionist said "Oh you are from genetics, come on through".

For the first time ever I had to get a urine sample from J. That was fun! He kept on backing away from the toilet when I brought the container close. But we did it! He filled it up and covered my hand and surrounding seat  as well! And yes I did clean the toilet seat properly (and my hands!), I would never dream of leaving a mess for someone else.

It was decided he would only have the numbing spray and not the cream as the cream takes 20-30 minutes to work and I was not happy to hang about that long and make him more nervous and hyper.

Into the special room and there were three nurses, a large orange highbacked chair, a stool and all the equipment. A t.v was playing a DVD in front of where we had to sit.
I had to sit on the orange chair with my feet up onto the stool and J had to sit on my lap.
They tried for a few minutes to find a good vein in his left arm but to no avail.
So they swapped sides.
He was quite shouty and was pushing me back.
I nearly fell backwards off of the chair, with J.
All his pushing around made my right hip lock and go into a spasm kind of pain, but I kept my grip on him!

Everyone was singing songs too to keep him as calm as we could. A fantastic rendition of Twinkle Twinkle, Old MacDonald, Wind the Bobbin Up, and Head Shoulders,Knees and Toes was sung out loudly and in perfect tune by all of us, including J! I managed to keep a hold of his head so he could'nt look sideways and see what they were doing.
My mum then whispered to me that she could see they were getting blood out of him which was a huge relief as I then knew we were going to make it and it would soon all be over.

These women were amazing. Angels infact. They are an inspiration and should be made available to all children needing blood taken. When it was over I wanted to kiss them as I had such a huge sense of relief wash over me and was just so happy that it was done and dusted and we would'nt have to come back another time.
After our last experience (which was at a different hospital) I was so sceptical and negative that he would have any blood taken unless sedated that I really never believed it was possible. But it was and it was'nt as bad as I had been expecting.

We now have to wait two to three months for the results as they are snowed under and covering another area as well.

The geneticists still reckon it may be this SMS as after having observed him in the flesh he portrayed many of the signs of it. But as I have maintained all along the results do not change his life expectantcy or his future. He will still be dependent on adult carers and supervision for life. There is no cure. But, if it is genetically linked then it means my other sons will have this knowledge for their future (obviously not explaining it to them now!) and when they are thinking of starting a family they can choose whether to go for genetic counselling and the like. I will be giving them the choice to make the decision for themselves.

Saturday, 23 July 2011

Appointments

Is'nt it ironic (don't you think ) that we wait months and even years until we get an appointment for so and so specialist for which we really really need to see, but the appointment that we did'nt really want, and can not really utilise comes through in days!
J has awfully flat feet like myself. So bad that the knees and hips are affected and it makes walking painful, running a farce (I look like a duck when I run, but with less grace) and cramps in the fallen arch.
The paediatrician had said she may refer us to podiatry, but I said it would'nt be much help as he would'nt sit still for longer than a milisecond and as I know full well you have to have casts taken of your feet, people wiggling your feet about, you have to walk up and down for them to see just how ungainly you are etcetera.

So what happens? I get a call from podiatry who say they have a cancellation that day and can I bring him in?
I very kindly explained why we could'nt make it :- School, no one to collect O from his school, an appointment slap bang in the middle of all the others, a baby in tow, a non verbal, scared and loud child.

I think regular readers of this blog will be able to understand fully just what J would be like in the middle of a waiting room, full of strangers, waiting about, not understanding what is going to happen, stressing out, shouting, head banging, screaming, laughing wildly in peoples faces, hitting me, and then finally when we get seen he runs for the doors, yelling, kicking, screaming and panicking that he is going to have some dreadful procedure implemented upon himself.
"Oh" is her reply. "Shall I just cancel it altogether then?"
"Yes please" I said.

I will just have to help him as best I can. I am sure some would say I should force him to sit and go through with it all, but have a look further down the blog where I talk about blood tests and then tell me it is fair for him to endure such encompassing panic and fear and still gain nothing from it.


And then by way of miracles I get an appointment through for the occupational therapist!!
Hurray!!
Only seeing as we have been 'at the top of the waiting list' for what is it now, two years (?) it was a shock.

And then bam I look at the date they have given. Right in the middle of our holiday! How flipping surprising.

So I telephone. And the person I am seeing is on holiday until the day before she is due to see us.
What am I to do?
I telephone back. I speak to someone who seems more keen on being unhelpful than helpful. I explain I do not want to go back onto the waiting list as it is not fair to be given an appointment in the summer holidays as it is known a lot of people go away at this time. Finally after wading through this womans almost horizontal work ethic I get given an appointment for when school is back. I felt as if I had swam through treacle in getting that sorted.

So we have an appointment. I wonder if it will be worth it and a valuable asset after all this time and prolonged wait? You know you will be reading about it here at some point in the future, so watch this (blog) space.

Sunday, 17 July 2011

Anywhere but the bedroom

J really does not do things logically sometimes.
The old mattress from the old broken bed in his room is sitting idly in the 1st floor lobby area by the stairs that lead to the top floor. I am not strong or brave enough to lift it up those stairs by myself and as the only men in my house are all under nine years old and two of them are dogs, it is waiting until a knight in shining armour appears and helps me (along with 1001 other little DIY jobs needed doing).

I keep on finding J tucked up on the mattress, which he has tunred from vertical to horizontal along the lobby corridor. Not at night time, but through out the day. His lovely comfy new bed is sitting unused in his bedroom (and being mooned over by his middle brother who "really really wants a bed like that" ).

He does'nt detest his bedroom or have a fear about it as he spends time in there in the day and early evening,  it is just when it is sleeping time that he makes a hasty exit and settles down on the top of the stairs or the sofa.

There is no update as yet on the melatonin as the chemist did not have it in stock and so had to order some in. I do doubt that he will actually sleep in his bed in his room even after the melatonin, but then the reason he has been prescribed it is not for where he sleeps but rather what time he goes to sleep and the difficulties he has in doing that. I am sure I will be adding an entry in the near future about how it either helps him or has no effect whatsoever!

Thursday, 14 July 2011

New bed and the new word

So the new bed arrived. I got a small double this time so that J would have more room. I also chose a pillow top one so it is softer.
After one portion of the base arriving damaged we had to wait another week for the replacement.
The bed was made up, dressed with sheets and pillows and looked lovely.
Would he choose to actually sleep in his bed in his room now?

No!

He went to sleep on the top of the landing stairs again.

Next night he played in his room happily and watched his Bear DVDs. Come bed time he clattered out of the room, bed cover draped over his shoulder and dragging behind his stomping feet thudding down the stairs.
He settled himself on the sofa and went to sleep.

Now remember his sleep is not regular at all. And so when I say he went to sleep, I don't mean at 8pm like a lot of nine year olds, no I mean at his usual time of giving up, around midnight.

I have finally got the prescription form through from the GP today so am collecting his medicine tomorrow.
I am in anticipation over whether it will have any effect on helping him to get to sleep.
Melatonin has been a long drawn out battle to get prescribed and I really do hope it helps him to go to sleep as the boy is growing fast and needs the energy to do so.

Now to traverse away from this topic I thought I would share an anecdote that occured earlier.
J is echolalic as I have explained before. This means he can parrot words said to him (not sentences though) but has little understanding of what he is saying.
He arrived home from school, having been dropped off by the transport van (that carries a couple of other children as well). He walks into the hall way and announces straight off   "oh  f*** it". He did'nt use it purposefully, rather that he had just heard it being said. I wonder if it was the van driver as I am sure the female escort that sits with the children in the back of the van would not speak like that.
I've never heard him say that before and did my best to ignore it and not give a reaction. O my middle son knows it is a rude word and so did'nt need telling so.

Mind your language please!

Friday, 8 July 2011

Tough Talking.

Something a few people have learned over the past week is that I will never allow my children to be sidelined or put into any danger.
I can not discuss it here for legal reasons, however, there are people with jobs out there who mistook my son being disabled as an excuse to not treat him or me with any kind of respect or decency.
I have been going through a very hard experience to deal with and at no point was it made easier or acknowledged.
I had to write down what my thoughts and opinions were as no-one in power was wanting to listen - they had closed the door and pulled the shutters down.
What I wrote was written from my heart. I did'nt have to think about what I was writing. It just flowed. And boy did it flow. I wrote an essay it would appear. But it was what I needed to do. And it was what was needed for these selection of people to hear. And hear it they did. And from what I have been told it made an impact upon each and every one. Some of them have been in their job for many years and have experienced this situation on many scales and so are hardened, but they forgot that us little people, the people that are still affected by the situation, do matter, and more fool them for dismissing me.
Many sleepless nights and tearful moments have engulfed me over the last few weeks but finally I have some closure, some answers, and some respect.
Considering it was centred on J and not me, he had no real understanding of the severity, or could communicate to me any happenings, and so it made it hard for me to deal with.
My boys will always be my priority. Always be the focus of my life. Never be dismissed. Always be made to feel safe and secure. And woe betide any person that thinks they can come our way and destroy that.

Tuesday, 28 June 2011

Blood tests and the trial of terror.

I received the letters through the other day from the paediatrician. She has written to quite a few people and really is worth her weight in gold.
I now know the GP has the letter stating she is to prescribe melatonin. The blood test forms (there are loads of them as she is testing him for lots of things such as thyroid (for which I suffer from), diabetes, iron level, liver, the Smith Magenis, and so on) I now have in my possession.
She has asked for the Occupational Therapist to contact us to arrange the soundproofing on the top floor so that J can go back up there and not disturb the household when he is jumping around. Now although she has written to them, does not mean I will hear a peep. We are still 'at the top of the waiting list'. I have been given that line for what seems like years.

What will be a huge ordeal for J is the blood tests. They have decided that he will have them done fully concious at the children's clinic. Oh how I wish they would take me seriously when I say that he will not allow them to touch him, let alone keep still, have a band wrapped tightly around his upper arm, and a needle inserted into his vein, with several vials being used to collect his blood.
His one and only blood test in his life was at age four (ish).
There we had to go along to a special childrens clinic again.
There we learnt just how strong he was.
It was me sitting in the chair holding him on my lap. His father kneeling on the floor holding his legs together to stop him kicking out.
A nurse either side to hold him straight. A plebotamist to try to extract the blood.

Then another nurse came in to hold his head still.

And another came in to hold what ever other body part he was moving.

He had turned beetroot in colour and was screaming.

So change of tact.

Let's extract the blood from the wrist.

Repeat the same scenario as above.

So they moved on to his thumb.

It took half an hour to get even a quarter of the vial filled with blood which was squeezed drip by drop from his thumb, all the while he is still screaming.
I have the appearance of a wrestler - all sweaty and bruised.
J is now a shade of purple.

I vowed never again.

And now as J is nine years old he is even stronger so will be fighting even harder.

So here I am again. Battling for someone to believe me that he won't allow any blood to be taken from him unless he is sedated.

But because the childrens clinic are so good with this situation it will be fine.

Oh yes, because J will sit and watch a DVD on the screen and not realise that there is a metalic sharp pointy device headed for his uncurled arm. And yes enough soothingly patronising comments are really going to make all the difference to a child who has no idea what you are explaining to him and no idea what the hell is happenening, apart from a lot of noise, lights, the smell of medical equipment, lots of chatter and me trying to keep him calm and still - and that is before we enter the room of doom.

So it is with trepidation that I take him for these tests. And no doubt we will then be told he needs sedation.
Got to love the time wasting eh?!

Saturday, 18 June 2011

An MP with another stupid idea!

Every now and then something or someone comes along and opens their mouth, spilling out their carefully thought out words, and makes the world wonder how they ever thought their diatribe was ever going to be acceptable.
The latest person (who holds a position of power) is Philip Davies, a Conservative MP. That will be the same Conservatives that are cutting many resources and funding to disadvantaged and disabled people already (and countless other cuts to the rest of the country's hard working people) and who are mainly educated at Eton et al (meaning they come from money and have never experienced hardship - unless you count the day the gardener didn't trim the hedge and spoilt their view from the oak lined library in the west wing of mummy and daddy's palatial mansion).
There is a link here for you to follow so you can read in full his statement, and the reply from Dame Anne Begg , who chairs the Work and Pensions Select Committee.
http://uk.news.yahoo.com/fury-mp-says-disabled-less-145735024.html

To surmise, this MP has this  extraordinary idea that disabled people are beneath the rest of society. Why else would he suggest they should work for a wage which is below the national minimum wage?
The suggestion that he has any idea of the foundation of his belief stems from him saying 'he had spoken to people with mental health problems during a visit to the charity Mind and found they were "quite accepting" of the fact they would be overlooked.'
'Quite accepting'. Did they actually say they would be happy to be employed for a pittance and lack of respect? I don't think so.
This link is a direct response from Mind in regards to his comments attributed to his visit -
http://www.mind.org.uk/news/5218_mind_responds_to_statement_by_philip_davies_mp
He goes on to explain that in society if a person with a disability goes up for the same position as an able bodied /  neuro typical person, that they will be over looked for the person minus a disability.

Herein lies the problem and the problem is only being exacerbated by Mr Davies by suggesting that employers can now offer the same job to a disabled person and save themselves some money in the process.
If we are ever to have an even balance in this country, and indeed this world, then this out dated notion of thought needs to be replaced with common sense (something that  this MP does not seem to have) and a modicum of decency.


It is amazing that he is so committed in his belief that he has solved the problem of disabled people on benefits and struggling companies that need to draw in the purse strings.
Here's an idea Mr Davies - why don't you work for less than the minimum wage? There are plenty of manual jobs out there for you. You could work ten hours a day plucking chickens on a factory line and be paid a handsome sum of £3.00 per hour. That is £30 per day gross! Wow! Pop the Krug corks now and celebrate eh? And hey, look at the bright side...you will always have chicken to eat on the table at home.. Plus the chicken factory owner will be happy he can pay you less than the person standing next to you, doing exactly the same job, the same hours, and the same level of output. Oh and of course whilst you are working there you are not sitting in your office thinking up ridiculous and deeply offensive ideas that will try to put all the hard work and effort of all those that champion disabled people back ten years.
Win win all around I do believe.



Click here to see more from this man and his way with words...
http://www.twitlonger.com/show/b6m275

Saturday, 11 June 2011

Having a 'smashing' time

So J and his headbutting. Something I have blogged a few times about before.
Lately it has become a daily occurrence and one that he does when he does not get his own way.
It centres around food and his demand for his favourite (or rather the only limited foods he will eat) foods.
As I have also mentioned before, albeit briefly, he has no stop mechanism when eating. If he were to be supplied with a never ending supply of chips or chocolate (yes not good foods to be in your limited intake I know) he would eat them until he was sick, then eat more.
As we are awaiting the genetic testing to be done we are in limbo over the other possibilities of the root cause of his disability.
It has been suggested that he has Smith Magenis Syndrome. (find out more here - http://smith-magenis.co.uk/index.php?page=what-is-sms ) This is closely similar to autism and its traits, although there are differences in facial appearance (not in all SMS children/adults).
With SMS there is a general problem of food intake being too great and the inability to not feel full or to stop eating. This is not pica, where the person will eat anything, this is more to do with gorging on favourite foods.
A lot of SMS people are overweight/obese because of this.
J has 'weight issues' but as he is also very tall for his age (at age nine he wears 12-13 year trousers and a medium in adult t-shirts (more for the shoulder width as they always hang too low) he is not considered to be vastly overweight, although I do have to keep a close eye on this, and which is why the kitchen has a lock on the door.
Until the genetic tests are completed we will not have an answer, and so I will not wax on about SMS until there is a confirmation.

Anyway back to the head banging....
The other morning before school, he was all dressed and ready to go, we were just waiting for the transport vehicle to come and collect him. He wanted some biscuits he had spied in the cupboard. I said no. So he went and banged his head on his favourite object, the door frame of the front room/lounge. I ignored him - as per the psychologist suggestion. So he went into the dining room, which has a door at the back that leads into the backroom/conservatory. This door has glass panels in to allow light in through from the back room. I heard glass shatter. I knew what had happened. He had head butted one of the panes. Now amid me trying to keep dogs and children away from the shards of glass all over the floor, I had J who now decided he would run back and forth panicking about what he had done.
I managed to clear the mess up safely, and I now have the cardboard from a Rice Krispie box brown taped up over the broken pane on either side.

So I can add another expense to the ever growing pile of things that need to be done. At least he didn't hurt himself, or anyone else.

Sunday, 5 June 2011

Drawing what he sees, what he feels?


What do you make of this picture J has drawn? I put it up on my Facebook page a few days ago and the response seemed to be either of the following :-
J is performing on a stage to an audience OR
J is in a bubble, his own world, and the people outside it are you and me who can not get inside his world.
This magnetic drawer is a favourite of J and I have captured many drawings he has created over the last year.
I find his drawings reflect his emotions and interests and as he can not express by words how he feels or what he experiences I look to his artwork for clues.
It is amazing what you can draw on (no pun intended!) when you look at his work.

Saturday, 4 June 2011

Head banging damage

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This is J's latest self harm damage. Near constant head banging against any hard surface. He even uses the phone as a weapon to smash against his head. The car is not a head bang free place either as he will either hit his head against the window or he will head-butt the seat in front. The area is very swollen and lumpy and looks more sore and damaged than this photo is showing.

Friday, 3 June 2011

Put your right foot in.....

"Oooooooh ee okee cokee, ooooooh okee okee, knees bend, arm wev, wah wah wah"
Yes that good old action song has seen a lot of action in our household recently. Trouble is J only has the attention span of two revolutions of the song, so we sing the same verses again and again.
He's very good at the words, albeit missing out certain ones and mispronouncing others, but any stranger would immediately guess the song from his version.
The actions are a little hit and miss, but hey, it's good exercise for this rather wobbly mummy tummy and I don't care if people think I have left a few marbles in my handbag at home.
I see it that if we all participated in a little more hokey cokey and little less moody mithering the world would be a much happier place.
All together now "oooooh hokey cokey cokey, oooooh hokey cokey cokey" ( I've started you off , now carry on.....)

Wednesday, 1 June 2011

Panorama and how YOU can help

If you watched the Panorama programme on BBC1 yesterday you will hopefully be wanting to do something about the disgusting treatment our special needs community receives at the hands of some 'care' workers.
The National Autistic Society have launched a campaign and you can lend your voice via a click of the mouse and a few strokes of the keyboard.

Follow this link to make a difference -
http://e-activist.com/ea-action/action?ea.client.id=10&ea.campaign.id=10762

If you missed the episode you can go to BBC Iplayer and download it on your laptop/computer. I warn you though that it makes for very hard viewing and is especially hard if you have a special needs child or adult.

For more news that has resulted in the airing of this programme please see this link -
http://www.bbc.co.uk/news/uk-13548222

We cannot allow this practise of uncare to continue. Please lend your voice. Thank you.

Thursday, 19 May 2011

The paediatrician appointment

Melatonin. The sleep drug. We might just be getting somewhere. At last!
The paediatrician has agreed to write to my GP and tell her to prescribe it.
As I am 'CC'ed in on any letter sent out to others I will know my GP will have been sent a copy, and when she does I shall be ringing and ringing until she has read it and moves this whole debacle along to a proper conclusion, and one I have been asking for for such a long time.
As for everything else I needed to discuss with the paediatrician, we covered all bases. Nothing was left unsaid. She wrote tonnes of notes. And I fully trust that everything she said she would do, she will, and without me having to nag and moan.
Baby W was in the papoose and fell asleep so I was able to concentrate wholly on our meeting which made a big difference. A good morning all round!

Wednesday, 18 May 2011

Puberty

Well after over a year of J having B/O after exercise or a lot of stress, he is now showing signs of hormonal activity on his face, or rather his nose. I spotted ( sorry!) a crop of blackheads on the end of his nose and small red spots around the bridge yesterday morning.
He will only be nine years old at the end of this month as well, so it is all rather earlier than expected.
However it probably explains why he has become so hyper and manic with moods swinging from happy to screaming within the space of a few seconds. Those pesky hormones are striking up a storm inside of him and because there is no way I (or anyone) can explain what he is feeling / why he is feeling this way, and he can not convey it to me, we are just going to have to ride this storm until the testosterone settles down again - so I've block booked out the next nine years to deal with it!
I am seeing the paediatrician again tomorrow, and as I trust her implicitly ( as she has so much knowledge, experience and understanding of autism and it's wide spectrum) to offer me the best advice on coping with J and also on how I can reduce the stress for him.
As for the sleep issue I am hoping this will not be sidelined and blamed on puberty as I am not waiting nine years for them to allow puberty to complete!
There is no point in getting one of those books written for children on the cusp of puberty, which explains all about their bodies and the opposite sex. I had one of those given to me aged ten and I remember reading it aloud to my friend, but miss-read one word, which to much embarrassment to me we both referred to something by the miss-reading pronunciation of it for at least a year! So if I couldn't get it right, I certainly know J will not.
I do consider myself lucky that J is a boy however as I do not have the worry and anxiety over the most major aspect of puberty for girls - periods. I would want my daughters puberty to be delayed if it was starting this early, or something administered to stop the period appearing altogether (such as some of these jabs used for birth control).I am so glad I do not have this to worry about on top of everything else.

Tuesday, 10 May 2011

We have a start

We have an appointment with the paediatrician - hurray!
As it was only a few months ago we last saw her, and it is not usual to see them more than once a year, I had to approach my key worker at the local disability team to see how I go about it.
Luckily for me I have a good key worker, thankfully, and she told me to leave it to her to organise. I did. And she came back within days with an appointment for only two weeks time.
The paediatrician office secretary had said that there were no appointments until July at least, but my key worker explained to the paediatrician directly why I was desperate for an appointment, and so she has made a special booking, not on her ususal working day, to just come out and see me. I am very grateful, and will tell her so!

*The issues of sleep (or rather lack of) and the no can do attitude from my own GP surgery and everyone around us.
*His genetic appointment which has been delayed for a while now.
*He has developed a foot problem. The same it appears that I suffer from, and have spoken about in a     previous blog entry. He has the same outward symptoms as myself, and mine started at around his age too.
It is a physical disability that has no real medical help for. You just learn to live with the pain and the seized up foot muscles.

*His behaviour has gone down hill not just at home but at school too.
*Constant head banging.
*Mock crying followed by hysterical laughing.
*Sniggering (at nothing whatsoever).
*Blowing raspberries (when he is stressed).
*Forgetting simple things such as where he has put something down, not one minute before.

The boy needs help in getting to sleep. He obviously has little or no natural melatonin which is common in autists. And to be told by the medical profession he can't have it prescribed (when a few of my friends children have done / still do)  but can be prescribed an anti histamine (which supposedly has a side effect of drowsiness - it did'nt) is really getting me down. You can buy melatonin is America from supermarkets. In Britain you have to jump through hoops. Battle through rediculous red tape. Talk to clueless GPs. Cry. Beg. Plead. And then do what I am now doing and saying "enough"! No more BS. No more sleep diaries. HE NEEDS MELATONIN. Otherwise I will be talking to my MP and discussing the issue of negligence not only towards my autistic son, but to my other two sons, myself and my two labradors.
Wish me luck.

Sunday, 1 May 2011

Dr Crapola promises a cure

Sometimes when I Google autism and have not specified a particular search I find myself being bombarded with 'cures', therapies, courses and miracles ('for only $99.00' (£70) ).
There is no cure for autism. There really is no such thing as a miracle concoction of vitamins and minerals and secret additives that will reverse autism. Yes, there are vitamin supplements that may help with certain behaviours associated with autism such as hyper activeness, lack of concentration etcetera, but these are not cures and for a lot of the children there is no real noticable effect on the original reason for trying them.

There will always be someone who knows someone whose brother was working with this woman, whose mother's next door neighbour's friend had a sister whose child had autism, and with some magic liquid with which the marvellous parents bought on the internet, their little Johnny was cured. I may just hazard a guess here, but if this is true, and Chinese Whispers and tall tales included, then maybe little Johnny did not have autism at all to start with.
Some children are expected to be brain surgeons by the age of three and when they are not perfoming as well as mummy and daddy expect, or a diagnosis happy paediatrician who dishes out willy nilly a verdict after only one meeting, an easy one to label the child with is autism. Now I am not belittling autism at all or the diagnosis process or parents who are worried and trying hard to find out if autism is what their child does really have; more so I am talking about a certain minority of pushy parents who can not accept their child is not the leader in their nursery class and excelling at quantum physics by four years old. This child is labelled quickly but then, as time progresses, and they naturally catch up with their peers, (and after mummy and daddy have spent money on cures and treatments not recommended by the NHS) little Johnny is declared cured. 'Eureka! It worked! Pity those poor un-educated fools who will not pay for the same cure for their child.' This tale is then told and re-told, and bits added or subtracted to suit the story teller and the subject and there we hear of the miracle curing of so and so's little Johnny.

Back when we were attending the weekly session where J was being assessed whilst he played with a handful of other children, also being assessed, us parents were invited (with no option to say no!) to attend a course in learning more about autism, the impact on our children, the ways we can help them and understand them more.
We were shown videos of parents from various countries in their home setting, dealing with the day to day life of an autistic child. I was struck by the difference in how these parents dealt with their children. Some parents had flash cards, constant banter and nagging of their child to speak and copy words, noisy, unrelenting teaching and therapy sessions ; whereas the other parents were calm, they were softly spoken to their children, they played at their pace and did not talk about the latest intervention that claimed it would radically change their child.
I found it quite sad to see these children, lost within their own world, being made to act 'normal' and trying to almost bash normailty into their heads with the constant round of therapies.
To me a therapy is something relaxed and calm, not someone almost yelling words at me, flashing cards in quick succession in front of my face, and not letting the child be themselves.

With the rise and rise of the internet there are thousands of forums for parents to join. There are sub groups tailored for a specific genre, and within a forum I came across for mums there was  a sub group for special needs children. The majority of the posts created were related to autism. Questions about autism. Links to autism. Suggestions. Then there was someone posting links to supposed cures. She was replying to a fellow mum asking about how to help her autistic child aged four. I looked at the links and they were all about how all we need to do is re-programme the childs brain. It involved  an intensive course which to me looked too much for a neurotypical adult to cope with, let alone a child whose world is already so scary and so confusing.
When I replied that there is no cure, that these false promises were laden with a hefty price tag, a very dodgy 'doctor' ( we have learnt that anyone, for a fee, can obtain a certificate on the internet and become a doctor of X or Y, usually something obscure and non-commital, such as Dr of Modern Scientific Generic Crapola) , I was told I was doing my child a diservice by not trying everything to cure them. But, as was my final response, I was doing the only sure fire, guaranteed thing I could for my child, to make them happy, secure, safe and loved ; I accepted them. I accepted they had autism. I accepted that as of this moment, no cure had been found. Yes there were advances in discovering why autism occurs and more advanced diagnostics, but, there is no cure.
I left the forum after that, never to return to see the endless bile and spiel promising something that would not come forth.

Rather than tar all therapies as a con I am adding that there are a lot of  out there that are popular and safe and make no claims of being a cure, rather a positive effect on these children. Light therapy, music therapy, animal therapy, swimming, dancing, sports, singing, art, tactile, and sensory. These all sound lovely. No yelling in your face like an army sergeant, looking at quick changing images, being made to sit still and obey.


The one valuable thing I learnt from this course I attended was watching a video clip of how a child with autism and a child without react to a screen showing one flashing white dot. The flashing dot went on for a few seconds and then was joined on the other side of the screen by another flashing dot. The non-autistic child switched their view to the second dot that appeared whereas the autistic child did not. They had not noticed the second dot appear. I learnt how J sees his world. How he does not see something that appears so obvious to us, non autists, and how we need to appreciate this and accomodate it within our lives.

Instead of packing your child off to some latest cure that you have paid handsomely for, a cure that is filled with so many promises and big flashy words, go and buy some child safe fairy lights, fix them up somewhere safe, and let your special child look at them, twist them, admire them in their own way, and see how happy they are. If fairy lights are not their thing, find something, fun, non pressurised and safe for them.

A happy child is an accepted child.

Saturday, 30 April 2011

Sing-along-a-song

I have blogged before about J and his love of my IPhone 4 that he can use so easily to access YouTube and record images of himself with either the camera or the film camera.

Well, he has one YouTube clip of Bear in the Big Blue House singing the song 'Co-operation' and J tries to sing along to it. J recorded himself on the video element of the phone singing this song.

I found him pacing up and down the garden patio (happily pacing) with the phone close to his ear and was listening to his own recording of himself singing the song. There were bits missing and most words were not recognisable to anyone but me, but he paused at the right parts and was able to add the "ow" and the "umm umm" bits that filler the song between sentences. Where he did'nt know the words he stayed silent.

As he was listening to the recording he was also singing along to it perfectly out loud, and every word and "umm umm" or "ow" was in time to the milli second along with the recording. With some auto tuning and lip syncing he would rival Cheryl Cole (what, she does'nt sing live?!) for a hit. Add in some dancers, a ridiculous 'look at me' outfit (Gaga et al) and a Euro pop beat and it's number 1.

I was annoyed I did'nt have another camera spare to film him doing this. It really was quite amazing.
Since then he has recorded himself in various facial expression modes, changing the expression or blinking his eyes rapidly, and again he is in perfect sync with the recording.
The only thing I have to be careful of is him recording himself whilst I am chatting to the boys or on the phone. I hate hearing my own voice! J on the other hand seems to be loving it!

Saturday, 23 April 2011

Wasting money

As I am now involved with more services in our area because of my youngest and his Nystagmus I have begun to see how much money is spent,and wasted, in resources which employ people to provide a service, a service which has little impact for the majority and is also a huge waste, when so many other more important services are being cut back or scrapped altogether.
Along the way with W, my youngest, we were referred by the paediatrician to a service which I was told provides help and support to children with a sight problem.
I was contacted within a few weeks by this service and a woman came out to visit at our house.
Our whole meeting was a very start stop affair. She handed me a leaflet on Nystagmus. I said as we had had the diagnosis months ago I already knew about it. The leaflet was a folded A4 piece of paper, so nothing very much more than a general outline of Nystagmus.
She then told me there was a group of mums that met up every two weeks and rotated it in each others houses. And then she said "oh but they have now changed that to every six weeks and not at houses anymore, just outdoor places such as the zoo or the theme park." So really this was an expensive meet up with other mums, in a place where I could'nt ask questions and sit and relax a little, more so chase a baby round and get bored having no-one to talk to as they were off chasing their children, but have to pay for the privilege.
Then she told me about the toy library. And wait for it - "oh but it closed a few weeks ago."
Then she told me about a teenage girl of thirteen who lived up the road. She had Nystagmus, but she also has a few major disabilities which are more of the issue with her. She wanted to get this girl to come to my house and visit me.
And finally when I asked what actual service does she provide apart from handing me information on things that have become obsolete  she said she could come to our house when he is eight years old and teach him to make a sandwhich. Yes, that's right. She would be paid to come to my house and show my son how to make a sandwhich. Of course I am far too lazy to do that myself.
Her team is made up of three people. So three people are paid to hand out this information and provide this service, but closing down vital Sure Start centres which are accessed by the whole community and provide information (up to date and not like this service) is deemed okay.
I know there are many parent focused groups out there, groups that are formed to source ideas and present to councils. But really, how much do councils take on board? Would they be bothered that so much money is being thrown at this service when it is not really providing much?
So all this woman offered me in the end was this teenager coming to my house. To be honest I felt very uncomfortable about it. I could explain and give reasons here if you find this odd, but I don't feel I have to justify myself in my own blog.
The woman called several times trying to arrange it with me until finally I plucked up the courage and told her that I felt uncomfortable with this. She became a little offish and then said "okay I shall close his file then" and hung up!
Waste of money. Waste of resources. Another council run service that misses the point of their existence. A meet up, run by this service, and held at the same council run place, every week/fortnightly would surely be better? Information leaflets made available to take home. Sharing stories and ideas with other mums. A place to feel secure in. How do they get it so wrong?

Friday, 22 April 2011

Oh I do love to be beside the seaside

Down by the seaside. A place children love. Splashing in the water. Throwing stones into the waves or building castles in the sand. Eating ice creams that begin dripping the minute they are served. Listenting to the squeals and excited screams from the thrilled and enchanted children.The smell of suntan lotion and wilting cheese sandwiches.
It is a place J loves. If it were possible he would spend all days splashing in the water. He won't go in past his thighs but that is all he needs to have fun. Throwing stones into the small ripples of the waves that lap in around his feet.
I can just sit on a blanket and watch him at play. He looks round every so often to check I am still there.
The only time he needs a break is when he has to go to the toilet or he wants another ice cream.
Yesterday he obviously got the urge for a toilet break and instantly pulled the top of his shorts down revealing his bits. I thankfully was watching and called him over. I'm not sure who saw but I stopped him swiftly and took him up to the toilets.
And to change the subject slightly, the seagulls around here in Hastings are massive. Enormous even. They are like regular seagulls on protein shakes. I thought the first one I saw was a plastic model (it was on a roof) but it flew off, probably to go and catch a whale or something.
They strut around in pairs, kicking stones and eyeing you up for potential food. They are also camera shy as everytime I try to capture them they turn and flee. I will keep on trying though just to prove their gigantic size.

This Easter holiday has been made fanstastic by the glorious weather. Pure sunshine all day. Usually school holidays mean stress and tension but apart from the sleep issues with J and his hyperactive nature it has flown by with much joy and relaxation.

Thursday, 21 April 2011

That old,outdated,discriminating word

What word? The word retard. I HATE it. It is only used nowadays to be rude towards others, others for the most who are not with a learning diffculty, but there are some disgraceful people who use it towards those in society who do have a disabilty.
I have blogged a few times about this word.
The latest person to use it? 'Lady' Gaga. Whilst trying to be hip and cool and oh so different she used the word to describe her retort for not copying another artists work.
Of course news broke of her usage of the word.
And of course the released statement from her camp claiming she is so sorry for using the word, and then bleating on and on with much contrition.
Why are the press jumping on the bandwagon though? Mock horror and outrage from them. The Sun being one of them. Well, The Sun can not stand in much condemnation over this 'Lady' as I have read in one of their columnists pages before now the word retard, used within a paragraph to describe the kind of viewer who would watch a certain programme they were reviewing.
This paper also employed the much dethroned from humour Frankie Boyle who saw fit to ridicule a disabled child not once, but twice (see my previous blogs about that).
Teenagers and immature adults use this word. Much sniggering and guffawing from them and a misguided feeling of being a comedian and exhalted to poplularity amongst their equally immature and poorly raised friends. It is not funny. It is not clever. It is discrimination and it needs to stop.

Monday, 18 April 2011

RAC a man that can. KwikFit a man that can't.

Yesterday I was going to blog about the wonderful RAC. Today I am going to blog about the fairly okay RAC and the completly useless KwikFit.
Yesterday morning I found we had a slow puncture on my back tyre and on closer inspection could see something sharp imbedded into it.
A quick call to the RAC via the Motability special 'hotline' and the first RAC man was here within 45 minutes - even though it was not classed as an emergency as we were based at the holiday home and so were okay with J and his needs.
The RAC man was fab. He diagnosed it quickly (well it was obvious!). However I was worried he would inflate the tyre and do a quick repair, and send me off to KwikFit myself to get a replacement tyre on my own time ; this happened to me the last time I had a puncture and it was lucky I only had the baby with me as it was a school day, so no J and his silliness and noises to stress me and everyone else out.
This RAC man was amiable and lovely. He said he would call KwikFit and order the tyre (as my car is classed as a 'heavy load' - my bottom is not that big).
Tyre ordered, he booked a visit from the RAC team for today who would collect the new tyre and come and fit it for me. He said he did not expect me to travel the 30-40 minute car journey to the nearest KwikFit with all my children in tow. He was lovely.

Today came around, and as promised an RAC man came out at the time stated. I did think it odd that he had'nt collected the tyre first but it was his time he had wasted as he then had to go out and collect it and come back to me. Simple enough? Why of course not!
KwikFit had ordered the wrong tyre! (I heard the RAC man on the phone to them ordering the correct tyre so it is their fault)
So RAC man comes back to tell me this.
He tells me the right tyre has now been ordered but will not be in till tomorrow.
This RAC man was hinting that I should go and collect it and get it fitted myself.
I hinted back that I was not traipsing all that way, with three children, one of which has learning difficulties and would be absolutely nutty in the waiting room at KwikFit, (who never seem to be able to fit a tyre 'Kwikly' rather they take their time faffing about ).
RAC man is not billed personally for doing this job. So RAC man can do it.

Funny how it all comes down to who you get coming out as to who understands and who wants to go that extra mile to help a stressed out mum with one flat tyre and three children all with different needs.

So todays RAC man has booked the job for tomorrow and has said he will inform the call centre to advise the man on the job tomorrow to get the tyre first to save time.

KwikFit (I won't name the location) will be getting a complaint. How difficult is it, for a mechanic company, (who specialise in tyre replacements) to order the wrong tyre - and not have it in stock anyway? My car is not rare. My car is not unusual. I don't have chavtastic extra wide tyres with which to pimp my car with. So to not have it in stock seems ridiculous.

Meanwhile I have a car sitting lopsided on the drive outside the caravan. Good job we don't need to go home for a week!