Moving on - Autistic developments!

I've some-what neglected my Autistic son recently, not physically you understand, but in my  blogging. After all that's what this blog is really about. There's only so much you can  write about our activities in an interesting way when his routine happens to be the same  every day .That's what makes him safe and comfortable. I've noticed however that things have changed  over the last few weeks, very subtly but they HAVE changed.

The sun has been out and I'm sure that has made a difference, my eldest has been around more too as he's on study leave. My autistic son likes that (even that is a change from three years ago when they hated one another)

It has been some time since my son ventured out into the garden- a real shame when you have  1 1/2 acres of field to play and run around in and watch the wildlife. Recently however I've noticed him popping out to the trampoline.This has been one of the best purchases we have ever made (in fact we are now on our second it has been so well used) My son has always loved the trampoline. He started when our National Autistic society organised some sessions with a wonderful teacher called Vicky. My son was 8 or 9 and demanded on his first day to do a somersault. I explained that was a bit advanced for a first timer but under Vicky's supervision he did it anyway and has never looked back! It's a great way for him to deal with his own stress and get some exercise.

Going out has been less of an issue too. He is old enough at almost thirteen now to stay at home.That has made life much easier as I am not stressed trying to go out while he resists all attempts to leave the house. Instead I will ask if he wants to come. If he starts to waiver I will say it's up to him and that I'll sit in the car for five minutes and if he doesn't arrive I will go and assume he isn't coming. It has worked (TWICE). As I've sat on the drive I've heard a little click on the back door and noticed an apparition in ear defenders climb the back steps ready to go. In fact over the last two weeks my son has been getting 'bored' with being at home and asking what he can do. I've learned not to suggest umpteen ideas as it never works- he doesn't really want me to suggest things he is just frustrated. He gets two suggestions and if they are turned down I walk away and leave him. It works wonders. All too often in the past I ended up with a headache suggesting ideas which he just continually turned down,becoming more and more frustrated. He wanted my attention.It doesn't work now as I walk away. Instead I found him in the garden cuddling the dogs yesterday after having 'nothing to do' and he quickly finds something when left with no options.
He has also asked to come with me to Grandmas when I visit on a Friday nights and has chatted happily away ( about his 'specialist subjects' naturally) and watched the films that she lovingly tapes with him in mind. (She really has 'got him')

Even food issues have abated somewhat.O.K so Gran has ended up with a bulk buy of Quavers which he has suddenly ''gone off" (A bit like my stock pile of those horrible hot dogs you get in tins which he took  a shine to at one point). Current favourites are now Chicken chow mein (so noodles are on the menu), curries (which have always been a favourite) bagels, white chocolate milkshake (in fact anything that begins with the word chocolate),roast dinners (but not pork because it isn't beef)- so he's not going to starve!

Oh and the sleep issues seem to be improving too - sleeping at 12.00am rather than 4.00am - we are obviously on to a roll (pretty sure it's all linked to anxiety)

As for bathing and teeth cleaning - well we are still working on that although I did do a double take the other day when he disappeared and I thought he'd gone to hide when in fact he was in the bathroom having a bath just as I'd asked him too.I'm just hoping he gets the hang of teeth cleaning before they drop out- we have got as far as chewing gum so far and the occasional mouth wash. But hey ho I'm doing my best- What more can a mother do?

My brother's Autistic Ability.

" Normal is just a setting on a washing machine"- Joshua Muggleton (Raising Martians- From crashlanding to leaving home)

What ME, follow the crowd?

Some time  ago my friend overheard her young daughter explaining her older brother's Autism to her school friend.
'Oh don't worry' she said 'It's just that he has an ability!'
It's great when siblings learn to accept their brother's or sister's disability as part of their normal family life- it's non threatening, occasionally annoying,can get in the way of family time but it's also part of their lives.
I've been thinking about the subject of being normal and I've come to the conclusion there isn't such a thing.Tony Attwood has said that the difference between having Autism and Aspergers is happiness. He may be right, People with low functioning autism may often be unaware of their differences and be happy in their own secure world. People with Aspergers are aware of their differences and are often not, mostly I think, as a result of expectations of other people.
I learned the other day of a young lad who has successfully gone through University having made many friends - most of whom were Assylum Seekers and Foreign students. It was as though they understood what it was like to be different because of their different cultures and beliefs and he was accepted without question!
I am reading Joshua Muggleton's book Raising Martians at the moment.I find that the best way to learn and educate myself about Aspergers is to read what Aspies themselves have to say.So far I've found the book clear and articulately written. It confirms why my son does much of what he does and has once again reiterrated how many children going through puberty can rarely get out due to anxiety  and suffer from insomnia. Once again I ask myself the question whether it's really right for us to be pushing them to go to school with it's inflexible structure and rigid time table .I've convinced that for us at least it is not. It would be my idea of hell to fight my son every morning to get him to school. Instead this morning when I came down he was working on his computer and when I said " Oh dear , couldn't you sleep?" His response was "Why Oh Dear? I didn't want to!"
With a softly softly approach I'm finding that my son is willing to do things as long as I don't MAKE HIM. Yesterday evening for example we went to the local fish and chip shop for tea. Not much for most of us but it was busy and crowded when we got there and I could see my son struggling to process everything even with his headphones on. He was barely audible when he spoke but because I know what he likes I was able to lip read. He sat and ate his tea in silence but he didn't go into meltdown mode or walk out the shop and, after the rush had died down he was able to talk again and even managed a trip to our local supermarket for an ice lolly afterwards. That's my idea of success. Worries about independence and adulthood can wait for now. Although I'm already genning up on the problems we may have to face in the future and campaigning for better support for adults we will deal with my son's specific anxieties nearer the time. Meanwhile we will work with our 'normal'.

Martian's mother xx

In at the Deep End.

My daughter spent the evening scuba diving. Albeit at the local baths but she is practising for a 'real' dive later in the year. She was really excited and announced that given another chance she would jump at the opportunity to do it again.
I don't know where she gets her nerve from, certainly not me . I was always the child who tiptoed round the ice rink so as not to fall over whilst my daughter will launch herself straight into the middle. It's probably why she ended up in Scouts amongst the boys rather than guides where she found the activities too tame.

Her big brother spent the day at school.It's the middle of the school holidays but he's preparing for his GCSE's and wanted to finish his D.T project as they haven't had enough time at school.Fortunately, as a home educating family we have often discussed the importance of self motivation and my son was up and ready to go at 8.00am. He'd worked out that if he started early he would finish early and he was right. He was able to spend the afternoon socialising with his friends .

Living in a remote rural area public transport isn't great but we have discovered a students' pass which allows the children to travel anywhere round Cumbria for £1. Their passes are well used and have enabled my neuro-typical children to travel to home from school after after school clubs without relying heavily on me- a god send particularly when their Autistic brother felt unable to leave the house making it virtually impossible to collect them.Having an autistic member in the family certainly encourages independence!

The brighter weather has definitely made a difference to my son who took the dogs for a short walk with his brother yesterday. At twelve he likes to be supported when he goes out and I've noticed he is much more likely to try new activities if his brother and sister are there but never the less there has been an improvement. About a year ago he wouldn't set foot out the house- he was too frightened in case a jet flew over our house (low flying jets occasionally fly over the estuary and can be very noisy when they come). He wouldn't even let me go out and leave him whilst I walked the dogs. He has moved on however and whilst he doesn't often choose to come out with me,he will now happily stay at home for a couple of hours with a mobile phone on which I can contact him ( he doesn't answer the house phone when I'm out - actually come to think of it- never, unless I ask him to.) I've learned something else too from another parent whose son is further down the line from me- what I thought was agoraphobia ISN'T. If my son wants to go somewhere such as K.F.C or to pay money into the bank in order to buy a pc game on-line then he will willingly put on his shoes and coat and climb into the car without so much as a moan. If on the other hand we need to go to the dentist or on a day trip (which in my son's mind has no purpose) Then no amount of cajoling by me will persuade him to go out the house. I have learned not to feel a failure that his dad can successfully get him to do these things whilst I can't- it's a common feature amongst oppositional pre- teens.Instead I use his father's ability to get my son to go to the denstist, have a bath, do his teeth- in fact all the things that most people would regard as everyday normal routines but that parents of Autistic children know only too well can be a nightmare!

Aspergers and Puberty

At the moment Autism is consuming our lives. Hence the lack of blogging for a little while. Sometimes it does that.You can be going along hunky dory then wham bam , you suddenly hit an unexpected blip! Puberty has been like that. We thought we had it sorted and then suddenly out of nowhere we had agoraphobia, anxiety, lack of eating and now inability to sleep.Actually, that's not quite true. Over the past two weeks my son has fallen asleep at 5.00am and slept until about 4.00pm every day.

On the bright side,he is sleeping on the sofa so we get a better nights sleep, also as I'm home educating  then he doesn't have to go to school in the morning. Other than that there isn't a lot of bright side. I'm stuck at home most days unable to go anywhere and when I do go out there is a battle to wake him up and go out the door so there is little incentive to do so.Offers of bowling and the zoo have both been turned down this week and my son has managed to go out once after much cajoling.
We have decided in the short term to go with the flow. I'm obviously worried about him and that this will spiral due to lack of exercise and going out but I have little faith in those that are supposed to help us in the NHS. A friend with a child with similar sleep problems has just told me that the local CAMHS have no staff. They are ringing people on the waiting list to see if they still need help as many on the list  'have got better' since they were added to the list. At what expense to their mental well being I hate to think. We really are living in the dark ages as far as mental health goes in Cumbria!

Whilst the disgusting lack of appropriate services continue I choose to get my help and advice from local parents, specialist books and the internet. They are the real experts. It's easy to become overwhelmed when several problems hit at once so you have to create a list of priorities and   we have decided to concentrate on sleep.Having made enquiries and done research we have opted to buy  a weighted blanket from sensorydirect.com to see if it helps my son sleep. Some parents swear by them. They are not cheap at over £100 however as my son generally walks round swaddled in a smelly old duvet for comfort anyway there is the chance that it just might work.My mum re-read Luke Jacksons Freaks Geeks and Aspergers syndrome and suddenly the chapter on sleep made sense. Luke was unable to sleep until 5.00am and he had school the next day. My son is the same. It's as if he gets sleepy as soon as it begins to get light.

 I've also ordered an Indian head massage book. My son has always loved having his forehead rubbed and I thought it might help. The trouble is I'm not very patient so I'm having to slow down (it feels like I'm coming to a stop sometimes!)

Any way so that's how it is in our house at the moment! If anyone has any inspiration then please feel free to leave a comment. All suggestions welcome! Meanwhile for any of you in the same boat out there I found this link with several suggestions http://www.myaspergerschild.com/2011/09/insomnia-in-aspergers-teens.html
to help your children sleep and this http://aspergersthealien.blogspot.co.uk/2010/06/insomnia-and-aspergers.html which suggests they might not. In which case I suggest our children learn as they get older to do their shopping at night and find themselves a night shift!

Learning as we go!

We  had a breakthrough this week. My son suffers panic attacks which have become more severe since he reached puberty. Trips out have become rarer and rarer.My son started to panic if i left the house to such an extent that I have to work my trips round my husband, Shopping trips to the supermarket with my son were abandoned months ago when he began to suffer meltdowns once in the supermarket.E ven getting out the house to go somewhere he wants to go can take ages just getting out the door he is so anxious.
Yesterday however he asked if he could come with us to Morrisons and eat in the cafe! Simply asking to come made me take a sharp intake of breath.I spoke to my daughter and pre-warned her that he might not make it and we planned a get out clause so he wouldn't feel a failure. I fully expected not to make it out the door but to my surprise  at the arranged time he bounced down the stairs fully dressed, donned his ear defenders and walked to the car never once looking up at the sky for noisy aeroplanes. Once in the car , off came the ear defenders, a sign that he felt O.K and he chatted animatedly with his sister about what he would eat.
We had purposefully chosen to go at 2.00pm on the assumption it would be quieter. Despite this there was a ten minute wait. My son opted to choose his meals from the menu outside the door then he and my daughter went to the far corner of the cafe where it was quietest to wait whilst I ordered.
They were chatting happily when I came to sit down and as my daughter disappeared to the ladies my son said that he felt far happier because his sister was there to support him.
He ate his meal with gusto and then asked the time . It was 2.30. His lip started to wobble and when I asked him what the problem was he said that we had planned to buy a halloween costume but he had to get home for three as he had arranged to play on-line with his friend.
To maintain his sense of success I  abandoned our trip for halloween outfits and said I would do that the next day. I suggested that he tried to calm himself by reading a book on the way home and that is just what he did! He was so pleased at his achievement and realisation dawned that he wants to do so many things that he feels unable to do and that my job is to teese life skills into him slowly and carefully .

Aspergers and agoraphobia

Making the most of a good Day

When I started to home educate I had a picture in my mind of beach combing, walking in the Autumn woods and visiting museums.
For many that is how it is. Not that long ago we were able to have some fantastic weekends away visiting, London, Manchester, Halifax , Bristol  and  the wonderful countryside on our doorstep has enabled us to sail on Coniston water, climb Gummershow and jump over limestone pavements.
However over the last year, as puberty has hit my twelve year old son who has Asperger Syndrome  I have seen a decline in my son's willingness to go out. It came to a head on Friday when a suggested trip to our local shop resulted him holding a knife to his chest in fear at the thought! It is a terrible thing to see your twelve year old child so anxious about something as little as stepping out the door but to him it is enormous!
High anxiety and fear of the unknown is common in children with Aspergers and we are not alone ,but it is hugely stifling and needs to be addressed. I have learned that I am not the person to fight this battle. As the main educator and person in authority throughout the day my sons physical violence and anger is directed at me if he perceives any criticism. Living with him is like walking on eggshells and I have learned to pick my battles. In contrast my son will immediately do what his father asks of him.
This is not because I am unable to discipline - if I had bad parenting skills then my other two children would misbehave but they don't. This is down to the condition Oppositional defiant disorder. If I chose to discipline my son in the same way as his siblings in the normal day I would spend my life fighting with my son, Something which is draining and exhausting. I have learned to pick my battles and that means when it comes to having a bath, cleaning teeth or going out on non urgent trips I wait for my husband to be present I then know that my request will be carried out (eventually) and that violence will not be directed at either my other children or myself.
 I have struggled with  the fact that he can be disrespectful, swears at me and has the capability to be violent however I have learned that normal strategies are inappropriate. These behaviours result from severe anxiety and stress and my main role is to keep them under control so that Family life can function. Educating-Oppositional-Defiant-Children and The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children have been confirmation to me that my strategies are the right ones. Despite criticism from parents who have 'perfect children' and can't understand how any child could be badly behaved unless the parents lacked the correct parenting skills I have stood my ground. I know my child. Sadly requests for help dealing with anger and violence from our local CAMHS have been to no avail. I have learned that not only is there a lack of ressources but a lack of specialist knowledge in Autism too.Some of the advice I have received would have been downright harmful had I followed it. One locum pschyiatrist criticised my decision to home educate and suggested I put my child straight back into school to learn socialisation skills. Perhaps she is unaware of the terrible bullying that some Autistic children receive at school or that children like my son spend half their lives being excluded because mainstream schools can't cope, or that suitable specialist schools are not available in this area! My son is above average intelligence and our local special school is for severely learning disabled children!
My experience of this system shows that this is not the place to go for help with my sons agraphobia, at least not for now although we have a campaign locally for better services after an eighteen year old with Aspergers comitted suicide lately, having been diagnosed too late (at 15) and having had inadequate and appropriate help.
Instead for now I will be seeking help from parents who have been through this, and adults with Aspergers to see how they handle it. They after all are the experts! I will also be reading as much information as I can to equip myself with strategies to help my son.Hopefully in time our children will get the support and expertise to which they are entitled from our NHS.