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.