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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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!

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!

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!

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.

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.
 

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.

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.

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.

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!

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!

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.

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?!

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

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.

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.

Head banging damage

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.

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.....)

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.

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!

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.

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.

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.

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!

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?

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.

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.

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!

Sleep damn it!

One am. That is 1am. The time J finally went to sleep this morning. The night before - 12.30 am. The night before that - 12.20am.
He sleeps for a few hours and then is awake and making noises.
Pacing the floor. Humming. Head banging. Door slamming. Making his echolalic phrases "ah starrr eee jush one" over and over and over a-flipping-gain. Grinding the lever down on his magnetic drawer. Going back and forth to the toilet. Opening my door and yelling "phone" (as he wants my I phone). Stamping around with all the grace of a trained herd of elephants doing a Bonnie Langford course on tap dancing and running when they see Lionel Blair wanting to join in ( you have to be over 30 to know who they are!)
And ulitmately waking my other two children up, plus the dogs who join in with their very own chorus of 'see how many times your tail can bang the wall before she tells us to shut up'.
When school is back from term holidays (and bank holidays and Royal Weddings) I am on that phone to the paediatrician and demanding more than the sleep clinic farce of time wasting waiting on a list for 12 months and form filling (which I have already done years ago).
Oh and what is that I see aloft in the sky at night? Is is a moon? Is it becoming full? Oh fantastic! Hello sleepless nights and moody days.
Sorry for the sacrastic nature of this entry but come on, we have been enduring this sleeplessness for years and no-one, not even the 'professionals' are bothered to help. Sarcasm is a coping method rather than banging my own head against a wall and joining in with J.

Blue Badges and Car Parks.

On a recent excursion to Hastings sea front I had to park in the council owned and run car park that services the sea front and all the amenities along there.
As we were with J I was able to use the Blue Badge. As with everywhere new we park when using the badge I always check whether it is free to park or if we still have to pay. The majority of car parks I have used around the country are free for Blue Badge holders, though some do have the exception that only the vehicle linked to the badge is allowed to park, whereas others are happy (and understanding) that another vehicle may be being used by the actual holder of the badge.
In this Hastings carpark it stated the following :

'Vehicles displaying a valid Blue Badge may park in the designated bays free of charge. If no designated bay is available they may park in an ordinary bay but the usual tariff applies.'

Tell me what is the logic of this? Surely the fact a car is displaying a valid badge is enough? Why is it only if they park within a designated bay that the fee is free? Add to this that there were twelve designated bays compared to the three hundred odd ordinary bays.
Where I live in Hampshire there is a carpark that used to be free. Then when a large Swedish company opened its big blue and yellow doors the council decided to start charging people to park (even though the Swedish shop had its own multi storey carpark).
The council decided to charge everyone to park. They had a thirty minute free part, but a ticket still needed to be procured from the machine and displayed in the car with this information on.
They had this rule even for holders of the badges.
Now it would have been sort of okay had they had plenty of machines for tickets, but they space them out and so (for the most) people with disabilites still had to traipse over to a machine, press the green button, secure the free ticket (or pay for a longer stay), take it back to their car, and then proceed to go shopping.
It seemed the council were happy to charge people with disabilites for parking.
Then it all changed. No fanfare. Just a sign up upon each ticket machine now telling people that a valid badge holder can now park for three hours, for free.
There must have been plenty of complaints as to have made this change occur.
My opinion is that there should be a blanket allowance country wide that in any carpark a badge holder (in any vehicle not just the car linked to them) may park for free, in any bay. Councils need to stop being crafty and start being kind.

A little paragraph I came across

This is a short piece I came across and is something that rings very true for me, so I thought I would share....

"I must learn to love the fool in me—the one who feels too much, talks too much, takes too many chances, lacks self-control, loves and hates, promises and breaks promises, laughs and cries. It protects me against that utterly self-controlled, masterful tyrant whom I also harbor and who would rob me of human aliveness, humility and dignity, but for my fool." ~
Dr. Theodore I. Rubin

Ear ache

J was brought to my front door today by the school van escort. I usually meet him outside the house when they pull up. The escort needed to pass on information from the school that J had been upset, crying and pulling/rubbing his ear. He was very upset still as he walked through the front door.
They had written in the home school book the same thing.

I looked and could not see any redness either on the outside of the ear or in the entrance.
I dosed him with children's Nurofen.
I telephoned the GP.
I was booked a slot for a telephone consultation after describing the problem and the fact I also had two other children with me. J is a bad patient in terms of being examined and the wait before hand is hard for him.
I received a call within five minutes asking me to take him in.
Upon arrival we were ushered into a side room away from the main reception, much to the tuts from a gentleman waiting in the seated area with a female companion.

We waited for twenty minutes and were then seen.
The female GP was amiable and understanding of J and listened to me when I explained he would not be examined of free will.
I had to grapple him and hold him in an almost headlock so she could look inside the ear canal with a light.
It was inflamed and red.

A quick print out of the prescribed antibiotics and we were off.

Now, I have to thank firstly the school staff who were on the ball with this. When he came home he was not ear pulling or rubbing at all. I could easily have taken his crying as a sign he had been upset by something at school, not by the reasoning he was in pain.
I then am grateful I pursued my instinct in calling the GP. Again I could have medicated him with pain relief and presumed it was a headache.
Then finally the staff at the GP clinic were swift, non-questioning and polite to all of us.

All the boys were well behaved.
No crying from them, apart from J panicking that the GP was going to do something terrible to him.

He has now had two doses of the penicillin and topped up with pain relief.

This side of his disability is so frustrating and so sad. He can not tell us what is wrong. We have to guess from clues he gives off. Clues we could miss if we are busy or not focusing.
He is sleeping now thanks to the pain relief calming him enough to drift of without the usual pacing around the floor.

Swim Boy

J has been going to swimming lessons with his class at the local swimming pool.
This only occurs once per school year however as they block book two weeks worth for each group.
J has never been a fan of the pool.
I have mentioned before I think it is to do with the echo and noise and also that he feels unsafe with the danger of slipping and being out of his depth.
I handed his kit into the school reception on Monday and asked them to take it down to the classroom as he was saying "goodbye swimming" over and over again and did not want to take the kit bag with him.
I had a note written in his home-school book on Monday evening asking me to send his kit in.
I replied I already had.
I see his teacher this afternoon and she tells me they could not find it. He had hidden it!
They eventually find it inside one of the teachers lockers where they keep their personal belongings!
He re-hid it again.
They found it.
He hid it again.
They removed it from the vacinity and even though he protested upon alighting the school bus, knowing he was heading off to the swimming baths, he did actually enjoy the lesson - according to the staff.

He is a cheeky young man and so very clever in his own way!

One Year Old Blog!

One year ago I sat down and decided to put into words what life for my family is really like.

The truth of raising an autistic child ; from the sad and frustrating to the funny and uplifting.

I am aware my blog has reached many many different countries such as Belarus, Germany, China, The UAE, Australia, Canada, Russia, Slovenia, Hungary, Indonesia, France, India and the USA.

Thank you for reading my blog and for coming back again and again.

                                                               Here is to another year!

Au Revoir Super Moon ( don't hurry back.)

So this was the moon that caused the manic noises, flapping flapping flapping, almost zero sleep, and restless marching up and down.
I won't mention the WWII bombs that were discovered a few miles away up the coast from us thanks to the super moon and it's extra strong effect on the tides.
To me it will be remembered as that week that saw J become so unsettled it eventually affected all of us in the family, the dogs included ; as they were subjected to J and his over zealous cuddles and neck holds.
It is a different story this week thank goodness.
Still the sleep problems, but then we have had that for as long as my (very tired and adled) brain can remember.
There were of course the sceptics who wanted their name in print in various publications, but then they (as far as I was made aware) do not have an autistic child and therefore can not stake claim to pour scorn on the super moon and it's effects.
Every full moon sees a marked decline in his behaviour as I have blogged before, so it is with much gratefullness that the supermoon is not a monthly or even yearly occurance. I think Clairol Blonde would sell out to cover the grey I would grow from the stress.

Creativity with liquid

A blog from last year mentioned J and his like of chucking liquid onto the patio in the back garden, stomping through it and making patterns with his foot prints.
Recently he has taken to doing this indoors, namely ,( and thankfully) in the kitchen.
At first I thought it was an accident and he had dropped it by mistake, but I caught him today, mid act, with a cup full of water and a wild carefree chucking motion with his arm.
He was smirking (the facial expression was a smirk, but I am pretty sure he does not know this actual emotion and therefore it is not a proper smirk) and laughing, but I made him clean it up.
Not much fun in it then is there? Being made to wipe it all up with kitchen roll.
I could label it as creativity I suppose. I could invest in a large blank canvas, kit out a room with protective covers, buy some paint, and let him loose with his feet, his hands and his mind to produce a masterpiece.
I could sell it for a profit and turn the second floor conversion into a sound proof haven for him, where he can stomp around, singing his Bear songs in Brazilian, and have time out from the hustle and bustle of his brothers and dogs.
I shall await a call from Bonhams.....

Lights. Camera. Action.

Oh dear. J has now discovered the video element on the I Phone.
So not only do I have a stream of hundreds of repetitive photos of his hand up at his mouth and the sole of his foot (no I don't know why either) I now have three second clips of him making various noises and replaying them back over and over again.
I spend my time deleting these images and clips so as not to block my memory up and also as whenever I come to upload photos to which I have taken, if I have'nt checked prior to connecting the wire to the laptop, I find me being prompted to upload 234 images instead of the four I was expecting.
Perhaps he will keep this interest for the future and capture his thoughts inside of his head and let all of us, especially me, see what he is thinking and feeling.
If you zoom through his captured images it is almost like an old 'talkie' movie and is quite artistic in it's own right!

Little clues from the past

You know when you read about autism and the tell tale signs, do you ever look back to when your child was a baby and toddler, before perhaps you became worried (or other people/professionals told you they felt something was not quite right) and realise there were signs?

With J being my first born I was a little green in parenting. Yes I had the books and the parenting magazines to read, but there is always a get out clause of 'every child is different and reached milestones at different times'.
I found a parenting style all by myself which felt natural to me and fitted well for J too. At that time there was no name for it but nowadays it is called 'attached parenting' or 'AP'. I do not adhere to every 'AP' mantra however as I found my own groove without reading about it first.

I remember clearly one cloud free blue sky spring morning, out walking the dog (not with us now) and pushing J in his pushchair, and a plane went over us, making noises, and I said "look J a plane" and pointed. He had no interest. He did'nt look up to see what the noise was or at my pointing.
At the time I thought it strange as my book said they would be very interested in their surroundings and look to things being pointed at or that made noises. But, I had no knowledge of autism and so the thought it was a little odd never took issue with me.

When he was a toddler he loved to stack VHS tapes (not that long ago were they?!!) up in to a giant tower. Over and over again, day in day out he loved doing that.
The same for wooden bricks.

Another gem gleamed from the books was that he should notice if I was wearing a hat or a towel on my head. He could'nt have cared less and took no notice or even seemed bothered. Just the other day baby W looked perturbed by my towel on my washed hair and was unsure it was me until I spoke to which he grinned - and my heart went "phew, another positive sign that he is not autistic",

J never had a temper tantrum. Never. He was placid and accepting of everything. He was'nt bothered if he lost a toy. He sure has made up for it now though with his meltdowns.

He was able to complete a 26 piece 'lift out' alphabet puzzle (sometimes 25 piece if the dog had gotten hold of it) in record time. He could do it upside down as well. I used to say to people who watched him to look how he scanned every piece on the floor and just zipped through picking them up and placing them in their respective holes. This was at age eighteen months!

He never put his arms out to be picked up. He never made noises as if to say he wanted to be picked up.

He never pointed.

At around twenty months old he went for a hearing test as we thought he was deaf by his lack of communication and lack of awareness to being spoken to. He passed.

He never liked to share an activity. Not share as in turn taking rather looking at a book together or helping me to do something. He hated looking at books with anyone in fact. He would walk away from you if you tried to join in in what he was looking at.

One day I was carrying a friends child who was two days younger than he was and they were nearly two years old. I was talking to this child and they made noises and facial gestures that implied to me they understood me or at least acknowledged me. It struck me then that J was not doing that at all.

Then after that it becomes hazy as we moved and saw different professionals, but one incident which stays with me was around the age of two years and three months, when, at a toddler group for lonely mums, a lady whose job it was to befriend us newbies asked me about J. I explained he was going to see a paediatrician and she said "oh I expect it's autism". I said "no, no, it's not that", even though I did'nt know what it was! I was shocked she had made a claim and I did'nt know about it and I was in denial that he had anything more serious than just a lack of communication - nothing a bit of the impending speech therapy would'nt cure (!).

Unfortunately, when you have a first born with autism, you look at your next children with close inspection and manic fears.
When pregnant with O and J was still at the assessment centre (even though we all knew it was autism by then) I had found out O was a boy. This opened the floodgates to those around us in the autism world that this baby would have a one in four chance of having it too, how did I feel about having another boy (?) etcetera.
O was watched by me closely for signs. But, as if to reassure me, from such a young age as well, he did everything 'normal'. At aged four weeks he hated being in his pram and loved to be carried up right to see around him. He pointed at ducks, and dogs, and planes and lorries when sitting up in his pushchair.
He grunted and squeaked when he wanted something. He loved to look at books with us and shared the story without crawling / walking off.

Again, this time round with baby W I got the comments on having another boy. The risks.
And yes I am on high alert for the 'signs'. But, even with his sight condition, he is reaching out, not pointing as such, but the hand is going in the direction of something he sees and wants to touch. He notices me wearing my glasses and will grin and swipe them off with the speed of a leopard.

Time will tell of course but naturally I am hoping he is another O and goes on to prove to me he is.

Disabled People Against Cuts - A link I have found

I have come across this website via Facebook which I think is a very good idea and is enabling all who are disabled to have their voice heard even if they can not go on an actual protest march.

There is apparently a march occuring on the 26th March and all those who are armchair bound, wheel chair bound or perhaps are parents like myself who would find it impossible to attend due to the nature of my childs disability and the fact I have two other children to care for too.

http://www.dpac.uk.net/2011/03/in-solidarity-with-the-protesters-on-the-streets-on-26-march-online-map-disabled-people-and-allies/

There is a virtual map on this site and all those who sign up for it get a 'pin' on the map for their location.
The idea is to show that there are plenty more voices shouting out "No!" to the proposed cuts to the disabled community. As a parent who is directly affected by these proposals and who is already experiencing a lack of support from the professional body in our area, further cuts would be disasterous.

Get your voice heard!

The Vase and the Wee

Do you remember me blogging about J and his inapropriate weeing?
In the garden and on the landing carpet? Not the complete missing of the toilet bowl though.
Well the other day I saw something but did'nt really put two and two together.
I called J down stairs and he walked over to the tall but empty floor vase we have by the front door. It stands at a round a metre high off of the floor.
He goes to touch his private area and I tell him "hands off" - he is touching himself a lot recently and may well be puberty starting.
Fast forward to this morning and I am standing by the front door talking on the phone when I can smell urine.
I look down and see liquid floating in the vase. I move it slightly and there is liquid under as well.
It is most definately urine.
So he has now started using this as a toilet? I hope not!
There will be a 'talk' later ; me telling him "no J" as I point to the vase, "no wee wee". He will repeat back to me "Noooooo J" and let us hope that is the end of that.

What a great idea!

There is a woman in Dorset who took her redundancy money and used it to create positive roles for people with learning difficulties.
Instead of paying off her mortgage or saving it for her retirement, this woman, Jill Symes, bought a cafe (so an investment of sorts but still a risk in this economic down turn) and now employs these adults, so as to give them the ability to learn social and life skills.
Ms Symes used to teach at a local college for young people with learning difficulties so knew first hand the positive effect of having a job that enables them to mix in society and learn more.
The cafe is called Poundbury's Cafe which is located on The Green.
There are signs out for customers asking them for patience - something we all seem to lack nowadays.
According to a newspaper columnist who has written about this cafe, she saw one of the young female staff members the next day whilst out shopping, and this girl and her friend were buying themselves some handbags, with their own money for which they earnt for their work in the cafe.
Ms Symes (and her daughter Kelly) are providing a positive experience for everyone here - the staff, their families, the customers, and the rest of society who will read about this.

I wondered what role J could have, when old enough, to work in a cafe environment.
Serving the drinks would be a problem as he would be helping himself to the cola all day long.
Serving food which smells (pretty much all food then!) would make him gag, unless it was chips and then he'd be eating them.
He would be good at filling up the dishwasher though, and emptying it.
A little bit of direction and a lot of repetitivness and he'd love it.

Well done to Ms Symes and thank you for bringing our special young adults into the fore and proving that they should never be written off or forgotten about.

To sleep or not to sleep

The sleep issues that still plague J have had me pondering.
Being pushed back and forth between the GP and the paediatrician with both saying it is the others responsibility is not getting us anywhere.
There is a 'sleep clinic' in operation in our area, but as I have accessed this kind of service previously in Cheshire I am all too aware of the time wasting, paper pushing, form filling that you have to do for them, before they will look at medical ways in helping your child.
Filling out daily diaries with exercise activites, routines and timings for bed is time consuming and not practical when you have more than one child. These diaries are requested over a number of weeks so as the 'sleep clininc' team can assess and try to find a pattern.
However, all to often there is no pattern that is discernible enough to warrant a simple change in routine.
Parents who are seeking the final step for helping their child to sleep (IE medication) have exhausted all avenues of reasoning and have tried all suggestions and methods.
Medication is the answer.
Why then, is it hit and miss as to who is prescribed it?
Surely a child who is sleeping four hours a night is not sleeping enough?
Oh I have heard the classic line of " special needs children don't need as much sleep as neurotypical children" many a time from the medical field, but when the child is presenting with dark circles under the eyes, poor health, behaviour issues, yawning in the day and lethargy towards activites, surely these are signs that the sleep (or lack of it) issue is affecting not just the family but the child?
Melatonin is a popular prescription drug and is a naturally occuring substance within the brain. It encourages sleepiness and if not produced enough by the childs brain can cause problems in getting off to sleep as well as maintaining sleep through the night.
If this is a naturally occuring hormone in the body and is available on prescription, why is it treated as gold dust? There are other stronger sleep inducing medications out there prescribed for children, but this basic starter is very hard to aquire it seems.

If a child can not get off to sleep until very late, wakes in the night, and is often very lethargic in the morning due to the lack of sleep, would this constitute a form of negligence from the medical professionals? If it is affecting his day to day life and physicality? I am not talking about the impact it has on myself and the rest of my family either, simply J and his body and well being.
How can months of form filling be deemed acceptable when it has already been done by me?

Oh and let us not forget that to actually meet with the 'sleep clininc' initially is a wait. Another waiting list.

My GP told me to give him an over the counter drug for allergies called Piriton. Apparently this foul tasting liquid can have a sedative effect. I tried it on him and apart from gagging on it (I did too and that was only through smelling it) it had no other effect.
It appears fine to medicate him with a drug designed for allergies but not a naturally occuring drug.
My GP has no knowledge of prescribing melatonin apparently so would not do so.
I did mention that online pharmacies sell it from abroad (usually the USA) and that I think it dangerous that with all the fobbing off I get from professionals I could easily input my credit card details and send off for some bottles of the stuff immeadiatly - never mind that they may be dangerously formulated.

So perhaps I should push again for another try at actually seeing someone who can prescribe a medicine and not a questionaire.