Sunday, 28 July 2013

Travels with my Aunt- and Son and Daughter's friend.

I waved off my eldest as he set off for Austria on Friday with Explorer scouts. They were off to London before taking Eurostar to Paris and were then going by train to Stuttgart, before taking another to Salzburg and the final leg to Zellhof by bus. I felt very jealous.Last time I visited Austria was before he was born and he is now sixteen. I love the Lakes and Mountains and I'm sure that this trip  will be a challenge and an adventure. Before he left school my son had the chance to do the Government Citizenship scheme but as he said,

"It's a bit sad when they teach you life skills in three weeks, after your school education has ceased!"

This will be my son's third major trip now. Over the last three years they have got progressively more challenging - from a week travelling round Cumbria, to a round Britain trip last year taking in Ireland and now a chance to visit Europe. He even has the chance to spend summer in Australia next year if he decides he wants to do it.

That's why I love home education. It's about seizing new opportunities and meeting new people. Only a few weeks ago my son escorted some Irish scouts round our local town which is the birth place of Stan Laurel. He met them last year in Ireland when they took him to the Orange parade. 'An awesome experience' and one which I as his mother would have been terrified about had I known.

Meanwhile my daughter has had a  school  friend to stay over.She used to live in the Canary Islands and speaks fluent Spanish- my daughter spent the entire journey in the car learning rude Spanish words!
"I wish we learned Spanish instead of French at school" she said " Can you teach me some?" 

Her friend will be spending the Summer holidays in Fuerventura and has promised to send us photos of where she stays and tell us about real Spanish life. It will also form part of my Autistic son's education.

This type of education is real and relevant - children learn because they want to and what's more the language sinks in and doesn't get forgotten.My daughter has spent the entire weekend asking the dogs if they want to go into the garden for a wee and poo IN SPANISH!

And education is not just about 'taking' either, my daughter's friend spent a day living with us and our Autistic son- she was intuitive and non judgemental and he sensed that.By the end of the stay he was laughing and giggling with her on the trampoline and he invited her back again. Praise indeed!

Thursday, 25 July 2013

ATOS and what the professionals should really be told about Aspergers.......

Yesterday was a prime example of what it’s like living with Aspergers. My son awoke to find he had no internet connection and as the day wore on his temper got worse and worse and he became more and more frustrated. You see ,he had planned to go online with his friends and he couldn’t. Everything I could say or do to pull him out of his depression made the situation worse until his response to anything I said had descended either to a swear word in reply.or thumping loudly around the room in defiance.

I recognised the signs , it was  time to walk away. He followed me into the kitchen, took out a kitchen knife and ‘pretended’ to cut his shorts and his legs with it. Having been there before the thing then was to decide how to de escalate his anxiety. Fortunately my tustle with the bread knife was quick and without incident so he obviously didn’t intend to use it. but either of us could have been cut. Cue to hide all kitchen knives away AGAIN.

I was taking my daughter and friend to town so suggested he come too and we would go and see his gran. Fortunately he agreed and got into the car, head in hands.

 Having dropped the girls off we went to grans and he sidled into her front room without a word, before sitting down for five minutes. As conversation turned towards the internet he began to become more distressed, stood up and walked out onto the street where he sat on the pavement out of view of mum’s window. Five minutes later I followed him into the street and sat with him for twenty minutes or so and was then allowed to massage his scalp to calm him down.

He finally allowed me to pull him up and usher him back into the house where gran (bless her) had a film on standby which he started to watch, enabling me to shoot off and get my much needed shopping and pick up the girls.

To anyone reading this who doesn't have an autistic child this may sound shocking, it may sound like I’m being blasé, but I’ve decided to share our story as this really is happening in many families across the UK and things need to change. As a family we have found out the hard way that there is no emergency help – in fact there is no help at all.

 Autism is not a mental health condition so the children’s mental health service (CAMHS) don’t want to know. The trouble is there are no Autism specific support services either  so you end up with the wrong help which at it’s worst can be more damaging than if you hadn’t been in the first place

. That’s why I choose what services I want – it’s not that I don’t want to help my child I DO but I want long term support for anxiety before he ends up with mental health problems not some ‘quick fix’ from which you are discharged after six weeks. Aspergers is a life long condition   – it doesn’t just ‘go away’. If you manage it well you can lessen the impact and help adult autistics to live a much happier and stable life style.

 They may not always to be able to work – it’s not that they don’t want to. It’s just that there will be times when it all becomes overwhelming and they will just need one less thing to deal with so that they can handle their anxiety.That’s where the ATOS assessment for working capability has been going wrong. A person with Aspergers may seem to function well one day but may struggle  the next. You have to take it day by day. And as for today – well we will just have to see.It doesn’t bode well. The internet isn’t working again….

Tuesday, 23 July 2013

Oh we do like to be beside the Seaside (but only when it's quiet!)

Yesterday evening, after the crowds had gone and the temperature had cooled, we spent two hours down on the beach,playing and taking in the view. It was one of those a rare special moments (which only the parent of an autistic child could understand) when my autistic son asked to come with us. 
Free of crowds and noise he played happily with his sister and I captured the  moment with the camera.

This is what life was like for him only a few years ago and I realised that it can be like that again in the future  if only we tailor the world around him and plan our activities for the 'quiet times'.

He loves the company of his siblings- it makes him feel secure and that is why he finds outings so much harder when they are at school.He misses social contact- but only a little bit.That's why the X box plays such an important part in his life. Sadly he doesn't feel able to join in the activities put on for autistic children at the moment - he has a fixed idea in his head as what they will be like!

We have had so many fewer 'grumpy' days since we followed his 'rhythm'- we have no expectation or demands and understand that when he says 'I don't know' he often actually means 'you choose'.
His sleep patterns are still irregular but he is sleeping less during
 the day- giving him time to go out and play or talk to his siblings
I heard the slap,slap slap of wellies the other day as I tended the front garden. My son, donned in red ear defenders walked passed the gate and waved at me. He had decided to walk to his friends over the road to ask if he could play. That hasn't happened in a long time - he normally waits for his friend to come here! I didn't see him again for three hours.Such a small thing to people who don't understand but for the parent of an Autistic child a massively SMILEY event!

Saturday, 20 July 2013

Autism, the weather and changing behaviours

Heatwave in July 2013
Well we are officially going through a heatwave here in Cumbria and it's been interesting to see how my son has coped. So many autistic children struggled to regulate their temperature and my son quite frequently wears his anorak on the hottest of days!
Thankfully we are lucky. If anything the hot weather entices him out of the house more- not far you understand, but into the garden to play with the dogs, nip out for a quick trampoline or a water game and into the house again. He's also enjoyed our family barbecues when the evenings were cooler.
Only the other day we were the only customers at KFC on our weekly outing and he sat in the car,sweat pouring down his face but he didn't complain.
Whilst drinking enough is usually an issue I notice he does keep himself topped up- it's just a pity he doesn't wash up his glasses afterwards- there is a trail round the house.
It is important to watch our children - for many they struggle with this hot weather and it can lead to melt down. Whilst we celebrate the coming of summer they are stuck in airless, stifling buildings, unable to go out or when they do they are inappropriately dressed.
Leaving cold drinks around or making ice lollies can help ( a great science lesson on changing materials), leaving curtains closed, explaining clearly and scientifically how the body regulates itself through sweating and pointing out what others are wearing in the hopes they will follow suit.
Weather is so closely related to the sensory issues our children experience that it is worthwhile paying close attention as it may well be a reason for their behaviours.
 Fortunately for us the hot weather is not a major issue but there are children who will not leave the house if it's windy because it 'hurts' them or they don't like getting wet - don't underestimate how influential it is upon our childrens' moods.
 I would love to hear of others experiences and any tips which they have which may be of use to others during this period of hot weather. Parent's are by far the most useful source of advice!

Sunday, 14 July 2013

Summer Days

I've just looked out the kitchen door to see my daughter put the finishing touches to her tent. She managed to erect it in 10 minutes- she has come on leaps and bounds since she joined scouts two years ago.

She plans to sleep in the garden tonight. It's been a beautiful weekend.She spend Friday evening camping on her friend's farm. Up at six to milk the cows, first breakfast at 7.00am then three hours haymaking before second breakfast at ten.
She and her friend followed behind the tractor over the fields on their bikes and helped with the baling! At one point they stood on top of the hay bales, gloves on their feet like ducks and did the birdie dance!
Lunch in the farmhouse of sausages followed by home made fruit flan then down to the river Crake for a dip (or three) in the shade of the trees!
It's the stuff Enid Blyton stories are made of and the memories will be with her for life.
She has learned so much. Did I know that all the fields have their own names? That lambs are born with tails and they ring them to cut off the blood supply? She is learning where her food comes from and just how hard the farmers work to supply it- and yet they have time to play host to her provided she chips in and does her bit!

We've had our fair share of culture here this week too. My daughter worked with the Rambert Dance company this week, producing their own dance in just one day. It was a hot day and required hard work and concentration but she loved it.

And last night Italian food with good friends.Sixteen of us,parents on one table and daughters on another. It was good to get together.

Then today. a picnic on the beach followed by a stroll to our local Buddhist retreat for cake and refreshments in their cafe before walking back to the car.

And tomorrow - in total contrast, a day at Blackpool Pleasure Beach.This is what summers are made for!

Friday, 12 July 2013

Summer time andStrawberries

I ate my first three home grown strawberries today,They gleamed out from under the leaves and I couldn't resist the warm sun drenched fruits. They were shouting out to be eaten!

In fact I found loads of wild strawberries by the roadside this morning. Gone is the fresh greeness of spring with it's frothy verges and dappled fields. The tractors have taken over.The fields have been cut and instead of a lush green are scorched yellow in the sunshine.In place of buttercups and daisies are seagulls and crows searching for flies and worms.

The grass verges have flopped and the flowers have suddenly become untidy in their bid for sunlight. However as I roamed the village today there was a mix of cultivated and wildflowers living cheek by jowl.

At the end of the drive I am greeted by my neighbours deep crimson rose which is interplanted with lambs ears just coming into flower. The planting is perfect as the flowers complement each other although she tells me it is more by chance than design.

Stella's rose

I love this mixture of delphiniums and roses too. A real cottage garden and I'm delighted at how hardy the delphiniums have proved to be as I expected them to be devastated by the slugs which can be found everywhere in  our garden.

Seeing the roses opposite me reminds me how beautiful they are and that I should buy some more.

My own front garden needs thinning this year. The plants are competing for space and need splitting up in the autumn.

In the hedgerow the elderflowers are out ready for making elderflower lemonade. Delicious but not as much (in my opinion) as rich red elderberry wine.

This convulvulus looks like a stick of rock with its candy stripes.

Here are those wild strawberries. There were loads - but in view of their size you would need a fair few to have a strawberry tea!

And the foxgloves are here, together with honey suckle,

I've always loved the scent. That and lily of the valley are my favourites.

The blue flags (or iris) which a friend gave me a couple of years back are well established and add colour to the garden,

And when I have the time to relax and paving slabs to build it on I really fancy one of these!

Sunday, 7 July 2013

Anxiety and Autism- Making it Better

Making it better - not an easy task....
Despite being a fairly experienced mum of an ASD child ( I've had thirteen years to learn!), it didn't occur to me until quite recently just how much anxiety and sensory problems play a role in causing autistic behaviors. I sometimes wonder why I didn't notice it before but I suppose that the problems are more evident now that my son can explain how he feels.

At the age of 5 my son told his teacher that the playground 'was too noisy'. For many children no matter how much support you put into the education system it won't solve the problem of the babble of excited children or the echo of a school hall with high ceilings. Only the  other day I rang my daughter whilst she was travelling on the school bus and I could hardly hear myself speak over the noise of screeching children- for an autistic child it's a form of torture, I couldn't  put him through that,

For anyone who tries to argue that my son needs to socialise and that home education isn't the answer I would answer that  being with his peers for 6 hours a day, five days a week isn't the way for an autistic child to learn how to socialise.My son can socialise perfectly well when he's comfortable, in fact he has friends of various ages- most of them older than him., Yesterday for example his sister's friend came for a sleepover. She has been several times now and my son has barely spoken to her.Yesterday the sun was shining and I found the three of them playing a game on the trampoline - my son has taken his time to assess the situation to the point where he has wanted to take part and be included. My daughter's friend on the other hand has had the opportunity to learn a little bit about autism .

My son functions well on a one to one basis when the person he is with has something in common with him. I try not to manipulate him into 'false' situations- he is capable of making his own friends- something he has done through his gaming and a tool which I think will benefit many autistic children as they cross the line into adult hood. It enables them to interact with others and get to know them before they commit to 'meeting them', I suspect that for many it will be a way to form relationships as the 'niceties' will be over before they even meet.

What is clear to me is that if you deal with the anxiety or sensory difficulties then you will help the behaviour.Home education gives you the opportunity as a parent to observe your child and establish why he is behaving in a certain way. Often when they come home from school it is difficult to unravel what caused a meltdown or anxiety because the moment has been 'lost' amongst the constant demands of thirty children on their teacher,

I know that if my son starts rocking or puts his hands on his ears that things are building up and to get him out of that situation before an explosion. We now have an arrangement that if shops get to much for him with their bright lights and ringing tills he will just walk out and stand by the car. (Obviously that wouldn't work if he was buying something at the tills but at the moment and for the short term future he will require support in shops anyway)

There are tool kits you can make up to help with stress. For older children , having a stress ball to manipulate when they are out ,or in my son's case ,a book he can dip into when thinks get too much) can really help.

Changes in routine cause massive anxiety so a diary (an electronic one for an Aspie kid would be great). For non verbal children picture cards or PECS of where they are going can help but be aware that it pays  to have a 'wild card' for when things go wrong (which they definitely will sometimes). Recently I came across a card with a picture of Homer Simpson and the words "DOH" above his head.It worked for a child who liked the Simpsons and calmed him down when the going got tough.

For my son we have found that Indian head massage works. I bought a book and taught myself - I'm not the most patient mum but it seems to work for us. We don't talk too much if he is feeling really anxious. He often just can't hear me but he visibly relaxes as the tension subsides.

The most important thing I have learned though is to talk about what my son is going through. I reassure him that every one has anxiety, not just ASD kids and that it's normal. What isn't normal is that it is more excessive for him and that an adult he will probably have the same feelings to deal with, which will be scary but that we're building up strategies to deal with that now. (He fancies one of those massage chairs you see in electrical retailers!)

That's where home education and mainstream education differs. In mainstream he would be concentrating on exams so he can 'get a job'. We on the other hand are learning how to deal with the one biggest thing that will prevent him from getting one and keeping it because if we can get that one right then the qualifications (whether formal or otherwise) will follow.