MS diagnosis in the family

Heading to Cornwall for New Year after having a lovely Christmas at home with my family and brother Harry and sister-in-law Hannah.  I am amazed at how far Joel has come - overall he was very calm apart from the Christmas eve church service where the ipad kept him happy for a while but it all became too much for him so Jake took him out for a walk.  He is happy to walk and the Ashdown Forest meets all his sensory needs - lots of mud squelching, water, fresh air and open spaces.





Jake, Harry, Hannah, Joel and Holly on the Ashdown Forest

Joel on Christmas day walking on the Ashdown Forest

We are all in shock as my poor sister Sian has been diagnosed with MS.  I had done an interview on my radio show at 107 Meridian FM with Murray Ferguson who has MS and is an inspiration to many sufferers of MS in the West Sussex area and beyond.  You can listen to it on this link :-http://snd.sc/wLQOUL 

It makes you appreciate the little things in life that we take for granted.  Walking to the shops, running up the stairs, eating breakfast.  I hope things get better for her but at the moment it's the bereavement part of the diagnosis.  I can draw similar parallels when we received the diagnosis that Joel had autism and Jake and I were in our sitting room in Australia in flight or fight mode.  We were calling our family and friends from the other side of the globe with this traumatic news and we were looking for answers and solutions to  fix the problem.  Like MS there is no cure for autism but there are therapies to help make it better and manage the autism and MS can be managed but it's the initial shock of having a disability diagnosis and getting into the system with the paperwork which is hard.

When returning from Australia three years ago I had to get Joel into the system in the UK and filled out the Disability Living Allowance forms while feeling exhausted pregnant with Max and with Holly age 4. Jake was still in Australia finishing up his work out there and trying to sell our house.  It was a gruelling process and to the system Joel was another figure but according to them he wasn't disabled and it took a year to get the allowance and even a disability parking card took me nearly going to a tribunal even though I showed them I had one from Australia.  Don't ask me how I got it in the end but I did and I had to keep on knocking down the doors.  I even had to get him re-diagnosed here as his first diagnosis was PDDNOS (it means autistic features but not really autistic).  So had another battle on my hands trying to see the specialist autism paediatrician in London and her team who we eventually saw and got severely autistic written on paper which would help with my paperwork.

My sister is filling out the countless forms as will be many more who have just found out they are disabled or a family member is disabled. There is no guide book for autism as far as I can work out the system gives some disabled people more rights and some less depending on which county you're in as far as I can work out it's pot luck and a lot of hard work!  I had to fight to get a social worker initially as I was signed off as it was written that Joel had a good haircut and was presentable and nothing much looked wrong from the initial trainee social worker who came to see me.  (I am going to be adding a blog about middle class prejudice in the autism world soon to elaborate about this a bit more).  We all know it's not about what's going on from the outside and so many parents with children with autism are on the edge.  We were living on the edge in Etchingham when we had no disability allowance and just three hours help a week.  This was hard with a new baby in the mix.  Joel was also regressing heavily into his autism as he was in a temporary placement at a school for disabled children trying to get a statement for him but he ended up being there over a year but the autism provision was poor.  We are so lucky he's now in a school which can meet his severe autism needs.

Thankfully we have a social worker now and more hours help and two nights respite in the week finally as he just isn't sleeping at the moment so that gives us a break.  That's another story but we had to fight for every hour's help.  We need more help in the holidays as all the provision is down at the moment and with children it's tiring at the best of times.  We're getting there but will need to get more help arranged for holidays.

I guess we all have to handle each situation we're given the best way we can and take each day at a time.  When asked where I think Joel will be in the future I say I don't look beyond a year at the most.  I guess this is how anyone with a disability such as MS may look at it.  To keep it in the day and make the best of the situation.  I look at Murray and know he has re-invented himself after an MS situation as he discusses in his Nine Point Plan and perhaps we could all take something from it:-

Murray Ferguson's One Life - Live It! A 9 point plan

1. be at one with yourself
2.make realistic expectations of yourself
3,.approach problems actively and creatively
4. reinvent yourself
5. live in the present
6. participate
7. be willing to ask for help
8. feel the fear and do it anyway
9. see good in all

Happy New Year folks.  Hope 2013 is lucky for you.

Alicexx

The Nativity Play

 

I was very proud this week of my two year old who made a grand entrance into the pre-school hall as the one and only lamb in the play,  (there were about ten angels so he had a walk on part for sure).


Entering with the three Kings, he proceeded to walk centre stage with thumb firmly in mouth looking at audience with his head slightly cocked to the side wondering what all these people were doing. He certainly was cute personified (sorry if you don't like that word but it's the only one that will fit here).  The audience gave suitable coos and ahhhs when they saw him.


Maximilian acknowledging me in school play

The Kings and lamb then sat to the side of the stage whereupon Maximilian spent most of the time trying to take off his lamb hat which was clearly bothering him as he couldn't really see very much with it on. He eventually managed to take off the hat and decided to ignore  the director  - Head of pre-school teacher directing from the side lines and wonder around the stage while Mary and Joseph were busy concentrating on their lines.



I don't like this hat

It's coming off

Well it's not all about Mary, Joseph is it?

What's all the fuss about?

 

 

 

Not sure if I'm meant to be upstage...

He eventually ended up with Rudolf dancing in a circle and taking no notice of his role as a lamb and had taken half his lamb suit off revealing a Welsh rugby shirt inherited by his cousin so think his popularity was waning at this point.

Dancing with Rudolf with lamb outfit slowly being discarded

I was very proud of the lamb and it made me think back to my role in a nativity play.  I am convinced I was a tree or third pall bearer to the left or some obscure part in a tea towel.  I was also one of the seven dwarfs (Dopey) and remember even then feeling humiliated for not playing Snow White who had ringlets and was a right little madam.  I remember her sniffing her nose at us dwarfs and resembling the character of Miss Piggy more than a caring Snow White. 

I was never to take a stage role in my pre-school career and by the time I got to my convent I did play a protagonist but was a man, so that was even more frustrating as everyone burst into laughter as I entered onto the stage.  I commended myself for not bursting into giggles too as it was very serious business playing an old major and sitting like a man upright and with hands firmly placed on legs when you are sixteen.  It was so hard to keep a straight face I remember now seeing one of the most naughty girls in the school right in the front row desperately trying to make me laugh.

Anyway the pre-school nativity scene was very sweet and the mother of Mary in the play got some good shots of herself with her little daughter.  I asked her later if she played Mary in her school play when she was younger because she looks a bit like I would imagine Mary to look like; dark hair, lovely olive skin and kind face, slim build etc and she said yes she had played Mary!  Her name is Angie and she is one of the nicest mothers in town always friendly and with four kids so don't know how she keeps her patience and smile. Am hoping she secretly shouts at her children otherwise she wouldn't be normal would she.

This traditional nativity scene made a change from my daughter's pre-school performance which made no reference to baby Jesus but was all about a fallen angel.  Very odd play where she played a star.  It was quite comforting to see that things haven't really changed from my day; even my children are following in my footsteps in their bit parts.  Maybe one of  them will get a better role next year.

 

 

Alice Gordon Clark - A Day in the Life of...living with autism and other things...: Sleeping, lights, keys and autism aren't the best ...

Alice Gordon Clark - A Day in the Life of...living with autism and other things...: Sleeping, lights, keys and autism aren't the best ...: This week I have had Joel up two nights where he just can't sleep.  Last night I ended up lying next to him and falling asleep just to kee...

Sleeping, lights, keys and autism aren't the best combination

This week I have had Joel up two nights where he just can't sleep. 

Last night I ended up lying next to him and falling asleep just to keep him in his bed otherwise he has these urges to go into the bathroom with a routine of  walking in - standing on the lavatory, opening the cupboard above the lavatory (the key for this has been thrown on the roof so it's rather redundant at the moment not containing much as it was there to hide toothpaste etc from him).   He then proceeds to go into the shower then hops into the bath where he kneels down and does what looks like a prayer to Allah (he doesn't go in the bath usually.  In fact he has a fear of the bath when it's full with water but for some reason this way of getting in is different).  He then sort of turns the light on and off.  Eventually this broke the light a few weeks back so the children have been having 'spa baths' by candlelight which sold it to Holly for a bit but the novelty soon wore off so finally an electrician came to fix it this week.

Andrew the electrician fixed other lights too which had broken and said he had another household he goes to as there's a boy like Joel who does similar things to their lights too.  He was so nice he even managed to fix a hook which fell off when he hung his coat up.  My word I need people like that around.  He will be back no doubt!

In the mean time I'm looking for a handy man as I need someone (a knight in white shining armour) to come and rescue all the electric toothbrushes from the roof !  Including all the keys for the windows and the key for the cupboard in the bathroom which I was supposed to have as a security cupboard as a deterrent from Joel!  The last handy man I had was so peeved off with these fiddly locks I gave him to put on my cupboards in the kitchen which took him double the time he thought he'd be that I've not seen him for dust .  I also had another handy man/gardener who spent most of the time in the garden as he didn't really want to do the handy man jobs.  Well you can't force these people can you?  I would love to have some sort of power over them but all I can offer is cups of tea and a look of gratitude from their mortal presence forever indebted to them for their DIY skills.  

I once had a Romanian au pair who was male (I have never had a male au pair again nor an au pair since for that matter so you probably know where this is going).  Anyway I thought I could have a ready made DIY man and gardener around.  Little did I know the guy hadn't stepped on grass nor seen flora and fauna in all his life and looked like he hadn't seen light when he arrived in the country.  He managed to actually break the mower by mowing over the electrical cord and he didn't know the first thing about changing a light bulb so I wasn't impressed at all.  He also threw up in my car on  the way down to Cornwall and blamed it on my DRIVING!   I very nearly ditched him on the road as I had him PLUS three kids which meant I now had four kids to look after.  Anyway that's a whole other story and I hope I don't have too many disaster stories like that again.

The main thing about autism are all the things we take for granted in a house like shutting doors.  I now have to lock every door like a cell block officer.  At the end of the night I  have to secure the doors as escape artist Joel will be onto them if not. Once he even managed to open the front and back doors very early one morning and we found him on the trampoline waking up half the neighbourhood.

Today I had my lovely neighbour over who babysat for sleeping two year old Max while I picked Holly up from school.  I shot back to meet Joel off the taxi who in turn ran upstairs and proceeded to do his bathroom routine and came down to hand me the bath plug.  Thanks Joel.  I wish he would solve the latest mathematical problem or make himself into one of these 'gifted' autism people for a change.  Don't get me wrong.   I do think he's gifted in some area, but just not sure what it is yet.  I don't think he's going to be the next Einstein by any stretch of the imagination, but I'm hoping he might surprise us with something.  Why else would he be here?

The Highs and lows this week...

I'll start with the lows.  Things kicked off the usual  busy Monday afternoon after school with a household of three children but all seemed relatively stable.  Until 4pm when Holly's piano teacher knocked at the door.  I opened it to the nice calm lady who was looked straight past me to something else to which she jumped appearing slightly alarmed with a 'hello' over to Joel standing by the bathroom totally naked apart from his school top on with what only can be described as a beacon appearing below which also alarmed me!  She ushered herself into the piano room and I ran over to Joel and asked him to put on his trousers and pants.  I reminded myself to put it in the communication book to his school for Joel to learn about putting his trousers on after going to the lavatory.  Phew!  He also does not know how to use the lavatory paper yet which will be another task to master with the help of his school.  I am explaining this because I know it's taken for granted with a child of this age but with Joel everything has to be taught and broken down into steps so that he can learn this task.

He's not getting any smaller and he has no awareness like a typical nine year old boy about being naked.  So after swimming on Tuesday he took off his trunks and showered in the lady's shower and I somehow thought this was not appropriate any more but inside I'm thinking he thinks it's totally normal and I left it .   I will have to think about him showering in the mens from now on but then he'd be alone and I would be waiting for him wondering what he was doing.  See this is just one thought of a parent with a child with autism.  It's just an additional worry which I will have to cross when I get to it and in the mean time not get too alarmed about Joel growing up.

The highs are that he saw his Granny Maggie this week and gave her an almightly welcome and we went to his wonderful school to see the opening of a bike area and senior school play ground.  It's amazing and all funded through a charity called the Wooden Spoon Society.  Please look at the website about the new senior section at Joel's school which currently goes up to age 16 :- http://www.stepbystepschool.org.uk/news.html
I was at the AGM yesterday for Joel's school and they can only cover the running costs and the staff costs.  There are 37 staff to 22 children. The staff are not paid a fortune and so the school relies heavily on charitable trusts therefore things like the school bus and the playground are all from grants and charities.  There is a new bus which cost £17,000 which was through a parent who managed to get a grant through a client - how amazing is that!

Step by Step are currently looking for funds for two interactive whiteboards totalling £3000 so if you're thinking of raising money or doing a marathon please think of this little school stuck on the East Sussex borders in a converted dairy farm and think of these amazing tutors working so hard to help these autistic children. 

There are amazing people out there who want to help. 
A plaque was put up and commemorated yesterday for Steve Cairns who sadly passed away in April 2012. He was one of Step by Step's original heroes, raising money over the years through the East Grinstead Rugby Football Club Sunshine Sevens to help the school. The staff will be forever in debt to his commitment and generosity towards the school. An amazing man who is sorely missed.  He basically was driving past the school one day in it's early days (it's now 10 years old) and saw the sign and went in and asked what was needed.  He raised thousands for the school and raised the money for the first school bus. 

I had an idea at the AGM to set up a parent fundraising party called Friends of Step by Step so we can raise money for the school and have just spoken to a parent friend who loved the idea and is calling round to see if we can meet to discuss how we can raise money for two interactive whiteboards.  I'm thinking of asking a curry house in Lingfield who have supported the local Young Epilepsy school and hoping they may support Step by Step.  When I last went it was only £10 for a delicious curry and this went to the school and now I have something to focus on am going to try to organise this!  It's people like Steve Cairns who inspire me and there are more on the website too but thank you Steve for thinking of these children like my boy Joel and I know your legacy will last for years to come.

Autism Angels...thank you and Happy Christmas

I have met many angels along the way since discovering Joel has autism.   Not meaning to sound too sentimental but this life I've ended up having has given me an opportunity to  meet these amazing people who work with children with autism .  They have come along at times when  I've lost faith in humanity.  They have helped restore this faith and given us hope.   I  wanted to thank just a few...

Hazel Whittaker who has been an amazing carer for Joel from Crossroads Care taken after Joel's First Holy Communion in Spring 2012

1) ABA tutors from our lovely Australian ABA Tutor Michelle Wilkin who had the patience of a Saint and always a smile and positive attitude to his current day tutors at Step by Step school for children with autism.  All Joel's carers too especially Hazel who took Joel through his First Holy Communion sessions and helped take him to the Beavers.  Lyn Chadwick needs a mention too from Aiming High East Sussex when we arrived in the country she gave us an afternoon out while taking Joel out usually on a local train ride!  Izzy Zeigler who started Joel off in the oxygen tank and helped with the exercises and picking up Joel from school when he first started at Step by Step before I got transport for Joel.

Michelle Wilkin - Joel's ABA Therapist in Sydney



Joel in our pool in Freshwater, Sydney with Michelle and Holly



Sinead who takes Joel to Cubs and helps with the Scotson therapy exercises.



2) Felicity Ellacombe at the Fred Foundation based in Fulham London www.thefredfoundation.org who came to the rescue and funded Joel for a year and a half at Step By Step School when we were losing our battle with the East Sussex Local Authority. 
She believed in our case and that we would get the funding once we had enough evidence of Joel's progress and finally this year once we had moved to West Sussex the Local Authority agreed to fund Joel for the next two years and then with a review.  Without Felicity's charity which is so specialist Joel would have regressed even further into his autism and wouldn't be learning but he's got that chance now.  They really do need the funding now more than ever so if you're thinking of sponsoring any charity please consider them. If I'd asked now they would not have been able to pay for Joel's fees as they are helping so many families like mine so please support them even if it's going to one of their events - look on their website please!

3)   Matthew and Alison Pope - who told us about FRED!  They are amazing parents who have helped give us advice about how to get autism related services as they are a bit further ahead than us and have a child with autism who's about five years older than Joel.  They freely gave us advice about funding for Joel's school through the Fred Foundation who had also helped this family.  I told you Fred were amazing...

4) All my friends who supported me when we discovered Joel had autism in Australia; Marianne, Sophie, Vicks for babysitting Holly especially when I had all the Joel related meetings, Jael, Helena and many more friends who helped me along the way once I was on a mission to get going with Joel's therapies.  All my friends in England new and old who have given me support and laughs along the way. 

5) Jeremy Marris from The Tree of Hope http://www.treeofhope.org.uk/ who has enabled Joel to have oxygen therapy and for carers and ourselves to learn the Scotson technique therapy for him from the Advance Centre in East Grinstead.  Without this charity we wouldn't have been able to fund this and Joel is benefiting hugely from this therapy and requests the exercises and it helps him sleep and YAWN!  Lots of children don't yawn much as they don't get enough oxygen to their brains so this amazed me that this simple technique can help with this and generally with calming and even talking.  Joel requested the exercises be on his 'back' yesterday and even though you may think saying 'back' is nothing to blink at believe me for a child with significant speech delay and severe autism this is HUGE and gives me and his carers hope!

6) Joel's local hairdresser Emma at The Wright Studio in East Grinstead for her patience and perseverance!  Joel now can sit happily in the hairdressers (with his ipad) while he gets his hair cut.  A year ago he wouldn't even let you touch his hair let alone cut it!  Hoorah for willing hairdressers all round the world who cut autistic children's hair they are unsung angels!!

7) David Urani, Educational Psychologist.  Without your letter regarding Joel's educational needs we wouldn't have got the funding from Fred and perhaps from the Local Authority.  I know you help countless other families too.  Gem.  And Australian too! 

8) Tasha Figg from The Springboard Project www.springboardproject.com where Joel has spent many hours on a Saturday morning having lots of fun with you and your helpers especially Tom who has gone to Uni now.  For taking Joel to the cinema for the first time this October half term and him actually sitting for the whole film with one 'toilet' break.  For Joel this is amazing.  Springboard supports families in the holidays too offering days out.  Joel went to Chessington Park and is going to a pantomime too this Christmas with Springboard.  Hoorah for Tasha for her smile, positive attitude and for giving us a break knowing Joel is having fun.

Joel with Tasha Figg at Grasshoppers in Crawley where he's loving the messy sensory play.


9) Lesley Schatzberger at Jessies Fund www.jessiesfund.org.uk/ .  Joel had music therapy through Jessies Fund with Jo Brazier and he really benefited from this becoming more and more compliant at the end of the funding when he first started he would hardly stay in the room.  Music is so important to Joel and without this charity and others like it so many children with disabilities wouldn't benefit from this which can bring on speech and help them with communication and expressing themselves. 

10) My family and Jake's family especially Granny Maggie, Grandpa Lawrence and Granny Mary and Joel's Aunts for all your help and support.  For giving Jake and I a break and looking after the kids.  Not forgetting Uncle Harry for his love and support and Uncle Gavin for being the new Wicked Uncle.  (I had a Wicked Uncle James who had a twisted sense of humour who hung me off a Cornish cliff and chased us on the cliffs and gave us lots of fun with lots of fear at the same time if you get my drift!).

 

Sarah Merrifield at Tablehurst Farm with Holly and Joel also rides on Liberty

 

 

11) Sarah Merrifield - Joel's riding teacher at Tablehurst Farm who takes Joel most Saturdays.  For her patience and care.  Joel was very fidgety to begin with a year ago on Liberty one of her beautiful Haslings and now he is calm and sits beautifully. 

12) Di Churchill the organiser of  Activenture and all the young volunteers who make it possible  http://www.londonyouth.org.uk/inspiring-young-people/activenture/about-activenture .  Joel had a wonderful activity week in the Summer in East Sussex and hope it's the first of many with Activenture.  It's the only group for disabled children who have young volunteers from age 13 who are one on one with the disabled child so that means they also share a dorm with the disabled children and it's often their first experience with kids with disabilities so it's a steep learning kerb for them in a week!  One young person looking shattered said to me 'they're having fun but we're exhausted!'...try having that 24 hours a day 365 days a year!

13) All the volunteers in Lourdes who helped out with our family this year including Jane, John, Pip, Tony, Angela and many more...

Volunteer Helpers Jane and John looking after Joel on his 9th birthday in Lourdes with Joel and me in the City of the Poor, Lourdes 31 July 2012

14) Lianne and the staff at High Trees where Joel stays a few nights a week.  I was so grateful this came along in October so that we could have a day once a fortnight to spend with my other two children.   I recently read an article about a woman who regretted not spending time with the two siblings of her disabled daughter and it was sad to read this so I try and give time out for them too.


The list goes on and on.  I just wanted to thank a few autism angels and will be adding to the list as I go along.  We need people like you and we love you all!  Thank you and Happy Christmas to you and all the other incredible people who dedicate their lives to helping children like Joely.

What does Christmas mean to Joely?

I guess I can be grateful that I don't have a nine year old demanding the latest gadgets/gizmos/toys/computer games etc as my darling Joely doesn't demand anything other than 'cake', 'biscuit', 'Thomas' (for Thomas DVDs), and now 'Ipad' which I'm very happy about as he enjoys playing with it and he's learning so much from it too with verb applications he's naming so it's helping him with the speech.  He loves to do jigsaws on it too and generally seems to find his own way round it.  He also loves his bike and scooter and has an amazing sense of balance which is unusual for a child with autism.  His trampolining is pretty good too!

Joely in his trampoling group he does every Wednesday after school

Big smiles for those great jumps with his lovely teacher Tracey

 

He also loves his TST exercises and will ask for these and place your hand on his chest area which relaxes him and I guess he knows this does him good.  (www.scotsontechnique.com).  He was there just this week with four of his carers who were all training in this and Linda Scotson who has known him for over a year since when we first started noticed a real difference in Joel's speech, eye contact and generally being more calm so it's down to these exercises and regular oxygen therapy and the ABA therapy he receives at school and biomedical intervention with the odd bit of chiropractic work from Stuart Korth!

Joel goes in a tank made to look like Thomas the tank engine and sits there for an hour five times a week once every three months.  I did try to sit in this tank with him but got so freaked out when they shut the door it was what I imagine being in a gas chamber to be like and got so claustrophobic I immedietely asked Ken the oxygen man to let me out!  He said it's quite common with parents so the helpers I have including Carly, Sinead, Mandy, Lacey and Izzy who started him off a year ago have been brilliant sitting in there getting oxygen with Joel ( I did sell it to them saying it was very good for their skin).  At the last Treating Autism Conference a Russian Grandmother Tamara Kimelman an autism researcher in the biomedical field who had recovered her
Granddaughter lectured on the benefits of oxygen therapy for autism and a leading doctor in autism Dr Goyal also noted the benefits of oxygen therapy.  (see her fascinating lecture at http://vimeo.com/50490123)

If you want to see this oxygen chamber see Ken at work at :-
http://www.scotsontechnique.com/videos.php?id=3  - it seems a bit odd but it works for so many children with autism and cerebral palsy.  *

Hey I'm up for trying anything if it helps!   My husband has the same attitude and even accompanied us to Lourdes this year and he's not a Catholic and doesn't share my belief in God but he admits that all these things we do with Joel help in some way.  Do you know these volunteers actually pay to go to Lourdes to help others and take time out of their work schedules to work with the likes of Joel and others which amazed us and certainly showed our faith in humanity! 

Kevin our hotel leader and Joel in the City of Poor, Lourdes

John a volunteer helper for Joel

What does Christmas mean to Joel?  I know he loves the carols and his favourite Christmas song is Jingle Bells which he first learnt in Sydney on his ABA programme and he learnt it too late so was singing Jingle Bells in January and actually months after Christmas and even now sings it occasionally.  He likes opening presents but not too keen on the actual present if it doesn't interest him so have no idea what to get him this year.  But he likes putting animals in barns so I may buy another barn as we've got through quite a few.  Also any transport I buy him the wheels will be bitten off within minutes so I am not getting him a car unless it is totally Joel proof and so I guess something like a Tonka may work but he will be interested in it for a minute so sometimes I wonder why I bother.  Obviously Father Christmas brings him a stocking of things that he usually tries to dismantle or destruct but am putting a request into the Santa's elves to make Joel some autism proof toys.

 

 

Joel on the beach at Polzeath on Christmas Day 2011 with his beloved 'Grampa'

Christmas will be low key for Joely and he'll go to bed like any other night.  He will probably get excited as his siblings will be and he may know Santa is coming and just not be able to tell me that.  We'll take him to the beach in Cornwall as he loves being by the sea and he finds peace there like anyone.  This will make him happier than any gadget a boy could have for Christmas.  But we will spoil him as will his Grandparents and relations and make sure he has a Christmas to remember.  He loves being in the family and is a very loved boy when he goes to Cornwall.  On the journey down he gets excited and says 'Grampa' and rocks back and forth with a big smile.  That's changed since a few years back when Joel had regressed so badly he was mainly in tears and upset and in pain on any long trip.  But since this biomedical intervention and the variety of different therapies we're on the right track. 

Maybe one day he'll be able to share a few Christmas memories with me....until that day we'll just keep trying.





* Taken from the scotsontechnique.com website

What is Hyperbaric Therapy?

Hyperbaric Oxygen Therapy (HBOT) involves breathing a high concentration of oxygen, in a chamber, under greater than normal atmospheric pressure.

HBOT accelerates normal healing by increasing the amount of oxygen in the blood plasma and therefore healing tissues. A greater concentration of oxygen stimulates the normal healing and repair function of cells and tissues, enabling them to heal much faster.

Pressure chambers for HBOT have been used in the UK for over 20 years. In 1994 Ms Scotson commenced investigations into the use of HBOT for children with cerebral palsy and other neurological injuries. After a successful pilot study she set up the charity "The Hyperbaric Oxygen Trust" which encouraged the use of HBOT for children with cerebral palsy all over the world and studies have shown that these children clearly benefit from the treatment.

HBOT assists children with cerebral palsy on The Scotson Technique (TST) by helping improve oxygenation of cerebral tissue and their ability to develop a more flexible and responsive breathing pattern.

TST strengthens weak, underdeveloped respiratory muscles, creates new core strength in the connective tissues between the bones, improves the nervous connection between the muscular skeletal system and the brain and improves understanding and intellectual development.

The HBOT programme supports this approach by helping to improve the cerebral metabolism and encourage a more flexible and responsive use of the respiratory muscles.

Some of the other conditions, which can be helped by HBOT, include:

Trauma or sports injuries, fractures, muscle injuries, post -operative healing, anaemia, stroke, asthma, MS, ME, neurological conditions and other related problems. (See other internet references on Hyperbaric Oxygen.)

Middle Class Prejudice in autism families

I am not a single mother, I am not on social services, I have a good husband and a pretty good home.  I am classified as white British and have recently ticked all the boxes in the Times confirming I am middle class (I hate those pointless surveys).  I speak with an English accent but it's not plummy.  I didn't pick up any Australian when I lived there apart from beginning my sentences with 'Look....' but I've got out of that habit now.  I did quite like using this phrase and other words like 'this arvo...'.ie afternoon.  The ending of a word is basically dropped and replaced with  'o' on the end for example 'the salvo' - 'the salvation army', 'Vinnies' for St Vincent de Paul, 'Rego' for registratrion.  For some reason this really amused my husband and me and we would be entertained at how many words were totally obliterated into Aussie terminology but the they got away with it in their very relaxed and irreverent style.

I have had a good education and appreciate the good things in life including the arts; theatre, architecture, dance etc.  I also appreciate mundane things like Coronation Street - do not ask but believe it or not my husband got me into that one and he's the last person I thought would ever watch Corrie. 

The thought of a social worker and the whole bureaucracy that comes with having a child with severe autism never crossed my mind.  I do remember in 2003 watching a drama preview about a mother with an autistic child with Juliet Stevenson*  and then thinking it would be too painful to watch so never bothered.  Little did I know I would soon be entering a similar world with a strong belief that vaccinations did contribute towards my son's autism. I witnessed how after one particular jab administered by a GP the lights in Joel's eyes literally went out - he'd had the MMR and then I firmly believe that the additional chicken pox jab pushed him over into his autism and I know because I'm his mother.  This was also backed up by a well respected paediatrician in North Sydney who started Joel off on the process of healing his gut which in turn heals the brain through biomedical intervention. 

This was so scary as while the Medical profession at large were telling us that there was no correllation between the jab and autism I knew in my gut that there was. Even worse was the guilt that I felt over this matter as I really didn't want to register that this could have damaged my son.   So I carried on and hoped it was just my imagination but if I've learnt anything on this path it is always to trust one's instincts.

After Joel's diagnosis when he was nearly 3  my world turned upside down but that wasn't to say it wasn't completely chaotic because after Joel's birth I was living on a roller coaster and the ordinary life had turned extraordinary in minutes after his continual screaming and challening behaviors wouldn't subside.  There really wasn't anything the medical world could offer us apart from sympathetic looks and a few special needs play groups.   Many people would enter my life in various shapes and forms, usually with big doughy eyes feeling sorry for me but not really offering any practical help. Our first sense of taking a form of ownership was when we  until we retained some ABA tutors to work with Joel. This was my biggest relief since acknowledging that Joel had autism as it was something tangible that was actually being done to directly address all his behaviours in a uniquely positive and constructive fashion.

So when I returned to England in 2009 I realised if I was going to get any help with Joel we needed a social worker.  This was something I was apprehensive of as naively I thought they were for deprived families and families with social and abuse problems initially and had no idea that they were to help families like mine too.

I was staying at my sisters wonderful country home in her converted stable with little Holly and Joel and I was pregnant.  Pregnant and in a stable sounds quite romantic really but it was far from it.  I was exhausted and wondering where Joel would go to school as he was truly regressing as we had dropped all therapy and biomedical intervention which was helping in Sydney.   He was put in the nearest special needs school where they had little idea about autism to get his statement until we could find a suitable school for him.  This would involve meetings with East Sussex Special Education Needs department who would later pan the idea of Joel going to 'Step by Step' school for children with autism hence our move from East Sussex to West Sussex about a year and a half later.

When a trainee social worker rocked up half shaved and looking like he could do with a wash - I think he liked the rock star look.  He was immediately impressed with the house, setting and the car - a maserati which Joel had a tendency to climb all over (my brother in law understandably was not impressed with this habit of Joels).  I had to explain that this wasn't my home or my possessions and that we were staying here because we'd just got back from Sydney and were trying to sell our house in Australia so were saving on paying a mortgage in Sydney and rent in the UK.  We didn't even have a car as that was on its way to us on a ship somewhere.  That seemed to go right over his head and he wrote in his notes about Joel - 'well dressed, nice haircut, something about his appearance which was well kept etc'  I really didn't understand at the time but now I think back I  was coming up against middle class prejudice.  Joel was signed off his books with a few leaflets thrown in and a 'nice to meet you good luck and you're on your own' .  This was put down to the fact I didn't tick any emergency boxes to him.  I was married, well spoken and looked like I was managing pretty well in my surroundings.  I wasn't offered any financial support and should have been offered something called direct payments which are for all children with a disability especially at the level of Joel's high needs.  

To cut a long story short Jake actually found out about direct payments through the author
Charlotte Moore who lived in the area and who has two children with autism.  We found out we were entitled to this to get a carer to help out with Joel for a few hours or more a week and have been knocking down doors ever since.   I don't know what a parent with a child with autism has to do when they are feeling like they can't cope - you occassionally read about tragic stories involving parents and their autistic children.  Like the mother who jumped off Clifton Suspension Bridge with her autistic child.   I doubt she was getting much help.   I wasn't getting much help until recently where I was at my wits end and my mother in law called the current social worker and spelt it out to him that if I didn't get help soon the whole family was going to go under.  From late September I got a night a week off where Joel goes for what's known as 'short breaks' in a small house in Crawley and it's great for him and great for us as a family.  They have recently given one more night so that we can actually sleep at night and have our evenings.  Joel has a tendency to go to bed very late and you spend lots of nights telling him to go back to bed and this can drain the resources.

But the question I want to ask is this.  What do you have to actually do or say to a social worker or to the system to get the necessary help?  I don't  think it's straightforward.  There is no rule book.  Each county works differently.  Each parent has their own battle and is on their own.  They have to  find their own way and some slip through the net.  I am not surprised as I could easily have slipped through the net and probably looked like a Stepford housewife in their eyes.   One friend I know who has a son with autism who is older than Joel and so she's been in the 'system' longer and pointed it out.  "Middle class prejudice".  I get it.  Can it be actually harder for a person like me to get more help for my son as opposed to a mother in a different demographic? 

Everything to 'the system' on the outside looked good and even when I told them I was struggling it still took months and months to get the right help and this is still ongoing.  We are getting there but it's like moving a mountain.  We moved the earth to get Joel into Step by Step school.  We moved to a town we don't know.  To a county we don't know (which we like very much).  We just had to do it for our boy.  Because he is our precious boy who drives us insane but we love him dearly.  Thank God we have done this together as I couldn't have done it on my own.  

I have no idea how the system works, but I find it incredible to believe that it is actually harder to get the help if you have a husband, nice house and all the rest of the trimmings when Joel's needs are equal to that of a child with severe autism where he needs one on one help at all times.  This should have nothing to do with class.  It's a need and it should be met and I shouldn't be made to feel guilty about it.  It's taken me a long time to realise this.  We'll keep going and I pray that other parents get the right help too.  Does it really have to be so drastic ?  It was for me.  Maybe my case is different but I know there are complicated cases going on all over this country with children with autism in the families.   I hope they are supported before it's too late.  I am totally serious.  A reminder of this comes from 14 year old Mary, a sibling who knows from experience that  'autism is no game'.  This is big and it needs to be dealt with properly with ongoing support from social care.  Not after reading about it in the paper.







* Taken from Wikepedia
She has been a critic of the MMR vaccine, as well as a supporter of the discredited^[13] Andrew Wakefield, whose research was based on a sample of twelve children.^[14] In 2003, she appeared as the campaigning mother of an autistic child, alongside Hugh Bonneville (as Wakefield) in the 90-minute drama, Hear the Silence, based on this issue, while Stevenson vocally joined the campaign against the MMR vaccine.^[15] Wakefield's work has since been discredited;^[13] and the articles against the MMR vaccine recanted by The Lancet.^[16]

My Seven year old daughter's Christmas list

I was so charmed by this Christmas list I wanted you to see that not all kids at this age are desperate for all the latest gadgets (unlike me at her age I'm sure so this is why I find this list so extraordinary, but then Holly is no ordinary seven year old).

1) Nintendo DS (ok so this is the most extravagant thing to note)
2) a notepad and pencil
3) a flower candle
4) a book about invaders
5) a book about nuns
6) a clock but only a small one
7) a decoration to go on our Christmas tree
8) a torch
9 rocking horse  (note - where do you get these from)
10) Encyclopedia (eh?  when did I ever ask for that age seven???)
11) a spotty scarf
12) skipping rope

As far as a list goes I'm not complaining !  Not sure I can find a book about nuns though for her age group?  Any thoughts appreciated.

Axx

I have a dream....

My dream doesn't involve yachts, hot climates, second houses, holidays...it is really much more simple than that.  It is set on a beach in Cornwall on an average sort of grey day but it's fresh and has probably just been raining which is quite typical of Cornish weather.

I am on the beach with my beloved family and I'm watching the sea and the kids are playing.   It's in our blood to be by the sea as Jake was brought up there and so was I from a young age.   It's not an unusual day but we're quite peaceful as Joel is always calm and happiest by the sea. 

Suddenly Holly runs up to me shouting 'mummy mummy come and see Joel' and then we run to see him and he's talking and he's being normal and being a sweet little boy to his brother Max and he is not surprised when he looks up at us.  Just begins to chat as if nothing has ever happened.  As if the autism he had has just been dropped and he's the boy he's meant to be.  I am so happy.  We all are.  It's a simple dream but it's the only thing in the world I wish for.  I would happily trade in anything I could for Joel to be like this.  I have never known anything quite so painful as seeing a child in pain, frustrated and trapped in his own body trying to get out.  That's how I see him.  Locked there somewhere and trying to find the key is an ongoing task.  I have never seen pain written so clearly over those that love him too.  He really does knock you for six.  It makes every day simple things when you're not with him seem quite surreal as you're not having to be hyper-vigilant every second about where he is, what he's up to, what destruction is he causing now.  Because it's rarely ever constructive.

Yesterday the university of Western Ontario made a breakthrough with being able to read the mind of a man severely paralysed and in what they thought was a vegetative state and they could look at his brain patterns and discover he wasn't in pain and that he was imagining playing tennis which is when the patterns in his brain went nuts.  www.bbc.co.uk/news/health-20268044

I didn't know if that was a cruel question or not but at least they could see his brain was responding.   I wonder if they'll come up with something like that for kids or people with autism who can't talk.  Joel is talking a bit.  It's mostly getting his needs across but that's a start so we'll keep going with all the help we can get him.   We're currently  looking into Talk Tools programme for Joel which help some children talk especially this amazing boy who's mother is an ABA therapist and has helped him to speak.  She was an inspiration to me and is on you tube as RISCA27.  Here's an example of how far she's come with her child with Talk Tools and ABA therapy  :-
http://www.youtube.com/watch?v=YadwN77KYQs 
This therapy requires more funding though for Joel and we're waiting to hear from the Local Authority to see if they will fund Talk tools for Joel as I think he'd really benefit. 

This AMAZING Welsh lady Risca Solomon is one of the unsung mothers of this world if you can see this clip it brings me to tears.  She is working tirelessly for her son and other children like him and I am so moved by her attitude.  I think it's the Welsh spirit or grit and determination in her too, which I I like to think I have a bit in me too from my father's side.

We were at her day course at the Healing Autism conference earlier this year at Brunel University. 
http://autismtherapy.co.uk.s88828.gridserver.com/meet-the-team/risca-solomon



Risca Solomon - an unsung hero and mother and tutor to Dan her son

There are people out there who have the same dream as  me and are living it like this lady Risca.  She is getting there.  People like her deserve medals from the Queen.  Not for how many TV programmes they have starred in.   There are amazing people working tirelessly for this dream and I'm not giving up as long as they are out there showing me the way.

Letter to Cherie Blair - Yummy Mummies Versus Working Mummies

13th November, 2012

Dear Cherie,

No doubt you've had a lot of letters regarding your concerns about yummy mummies wanting to stay at home to put all their best efforts into raising their children instead of working.  I'd like to add another to your pile as thought it may shed some light on the whole debate.

Your comments that all women should strive for both a career and motherhood so that their children will be able to in your words 'actually live without me' are to be commended.  I think you have completely got it right.  You have avoided probably the hardest job in the whole world.  Staying at home and being a mother is clearly not all it's cracked out to be and I think it's commendable you're telling mothers to go and work.

Why would any sane woman want to hang out with other mothers they hardly know with a group of dirty toddlers discussing nappies, nipple soreness, cake recipes and piles? 

During my career as a mother and working mother on part time contracts I would like to comment on both.  My contract work was the easiest by far.  I would go back anytime in a blink.   I can read on the way to work.  I don't have anyone asking me questions, don't have any mundane jobs to do like mainly clearing up dirty washing, clearing up dirty plates, cooking vast amounts of food on a regular basis, shopping for more food and changing dirty beds. To be going to work and being able to have a coffee in peace, have adult conversation, stretch my brain and actually remember I have a university degree and to be paid for it.  Well it's a no brainer isn't it. 

If you are part of the yummy mummy brigade there is an enormous amount of pressure on you to look good and have a good looking well behaved baby.  I encountered the yummy mummy experience in Chiswick when I joined the rather exclusive ante-natal group Christine Hill http://www.christine-hill-associates.com/ based in a very quiet and smart road in Chiswick.  You see I'd missed out on all the NCT ante-natal classes in the area so thought I'd better join one much to the dismay of my poor husband as it was at vast expense!

To say the group wasn't snobby would be the understatement of the year.  I walked in to prada handbags and polished nails.  Slick blow drys and Jimmy Choo shoes.  Oh dear I knew it was a mistake.  I am clearly not one of these.  But regardless I carried on going each week hearing about each and every one of their paediatricians.  Did they have their own?  yes.  Were they private?  yes. Was the New York apartment conversion going well?  yes... I had no idea how it all worked as I was going to a local GP in Chiswick who didn't even spot my darling Joel was breech.  Now that was why my pregnancy was so uncomfortable.    The lady running the group was very traditional and didn't agree with eco nappies saying disposables were better for the planet in the long run and that we were to answer no phone calls when the baby is born as we are to rest.  Some things were useful but to be honest the £480 it cost to enrol for 8 sessions just wasn't worth it.  My husband's previous PA had a similar experience to me and also felt slightly out of place with the yummy mummy brigade she encountered.

I was invited to a few of the yummy mummy's houses and brought along little Joel who gave me heart palpatations every time I visited these immaculate places as he usually wasn't doing the usual gurgles of the other babies but usually was upset, in pain and hence I was usually quite stressed. He certainly wasn't following the Gina Ford book Contented Little Baby Book to a tee like the others were.  Oh the pressure.  I found it so isolating and even though I tried to invite them to my house in Poet's Corner in Acton (Chickton to some), they weren't too impressed with the postcode I'm sure and spoke of exclusive parties I wasn't being invited to.  So Cherie I can see why you're so disheartened with this type of yummy mummy as they clearly were enjoying their husbands' bank accounts and shopping without a care in the world oh and bringing up their children.  I would not want to be classed in this category and soon found a lovely NCT  post-natal group in Chiswick who were much more normal and mixed with some working and some staying at home.

But Cherie when a mother isn't in the yummy mummy brigade like the ones you mentioned but the mums like me who try and juggle it all.  You make is sound easy.  Please don't make us feel guilty.   We need to be paid enough to be able to work and as you're a wealthy barrister you'd be able to afford the childcare that goes along with it.  Otherwise we are covering the cost of the childcare and nothing more.  For some mothers this is enough to give them the satisfaction of being a working mother and I can see their point.  I also know one mother of a child with autism who works full time and wouldn't have it any other way for her sanity's sake.  I understand this more than any mother. 

It's tough being a full time mother especially when there's a disabled child to look after. I work one day a week and it's like a break for me as I am concentrating on a job which is nothing to do with my family life and I love it!  Hats off to you for supporting mothers setting up firms in third world countries.  But if you took a closer look at mothers in this country you would see it's not as straighforward as just going to work with childcare costs to cover. 

Quite frankly why can't yummy mummies stay at home and be mothers to their children?  Live and let live is what I say and surely the child will benefit from seeing their mothers even if they do spend most of their time with the filipina nanny!  

I hope that we can meet to have a chat about this and how you can help normal women like me who do not fit into the super yummy mummy brigade but average mother with qualifications trying to start up.  Perhaps you could help me set a firm up nearer home?  I've got some great ideas I'd like to run by you.

Yours sincerely,


Alice Gordon-Clark

A Day in the life of....autism and the future for Joel

I have a few tips for you when you ask a parent with a child with autism what the future holds for their child and where the parent thinks they will end up.  Stop there.  Please don't ask that question because guaranteed every parent will be very brave and do their best to answer it with the best answer they know how but you know what?  They won't have  a clue.  They won't even be thinking more than six months to a year ahead I promise you.  And if they are spelling out said child's life they will be hoping for the best and the best laid plans are put down but not guaranteed.  They know that.  They will be telling you to reassure you and themselves.

I am asked quite frequently what I think will happen to Joel and I have to be honest I usually say I am only looking into the next six months to a year for Joel's future apart from his education.  This at least is guaranteed for the next two years until he reaches 12.  God willing he'll stay in this educational setting we have fought so hard to keep him in but I can't predict what the future holds.  That's in the hands of the local authority if they approve Joel's place to stay at his current school until he's 16.  He loves his school by the way -   www.stepbystepschool.org.uk .  This school has helped Joel from regressing more into his autism and finally he started to learn when he joined over a year and a half ago. 

I was asked on Friday night what will happen to Joel and I decided to play around with the answer....well I said he's probably going to live on a farm with a few other special needs adults and will have a farm job or something that he'll enjoy and be good at.  But that we would make sure he would have a fulfilling life.   There is a farm near where we live which does cater for a few adults with learning disabilities. Tablehurst Farm in Forest Row is a bio dynamic farm and I don't know the details but think it's a great scheme.  But to tell you the truth I have no idea if Joel will be pushing hay around, milking cows, shearing sheep or whether he'll be capable of sweeping the floor in the cafe there.  I hope he learns all of these skills but at the moment I just am hoping he puts his clothes on the right way.

I have been told about various communities where adults live with special needs and I haven't looked into any of them yet.  I am currently trying to keep my head above water with Joel's current behaviours.  Not sleeping is a biggie.  Last night I had to stay in his bed with him as he woke up at midnight and had a compulsion to keep going into the bathroom next to him and hopping in the shower to the bath to touching the shower glass a few times.  I think he has obsessive compulsion disorder too but that's yet to be diagnosed and it's a given with autism but no-one's ever told me that from the medical profession.  I am still waiting to see a paediatrician in this specialist autism field to help me understand this. 

Joel was so panicked last night that I was stopping him from going back into the bathroom that I could feel his panic attack but was told I did the right thing by his tutor today.   I was stopping his obsession to do this all night which actually makes him wired and even more hyped up.  So I pinned him down and got a very heavy blanket over us and put some music on (classical) and prayed he would calm down.  He did.  I was breathing out loud like they do in yoga classes and then he started to copy me as I told him to breathe.  Then I  literally prayed.  That's all I have left.  It worked for us.  He fell asleep and so did I - creeping back to my bed with with neck cramp at 2am. 

So I hope you can see now why I'm really  not looking too far ahead into Joel's future. A day at a time is all I can manage at the moment.

My viewpoint on Autism books

I have read some books about autism and my favourite is by Charlotte Moore called 'George and Sam' which probably gives the real truth about the daily highs and lows of autism.  But to be honest there weren't too many lows from what I remember as Charlotte's very positve ability to turn things round about her sons was inspirational. For example she talked about how her sons don't answer back and all the other negatives a parent can get from their children but are not in this vein when confronted with a child with autism.  Her boy Sam sounded just like Joel and I related much to her writing and her humour and it was a welcome relief from all the sentimental drivel a parent has to sift through about their children who have autism.

To some extent I agree wholeheartedly with Charlotte but at the same time I do want my son to answer back to me.  I would love him to be sarcastic but I would be grateful if we could start with having a simple conversation.  The best I get is something he learnt by rote a few years back 'how are you Joel?' to which he replys 'good' even if he's not so good.  I'm  still trying to get a conversation off the ground with him but feel guilty that I've temporarily given up reading to him. 

I have given up because if I read to him he snatches the book off me and proceeds to turn the pages like a speed reader not really acknowledging the story as such just getting a kick out of the general way the pages turn and perhaps registering the pictures I'm not quite sure.  I think basically once he's started turning the pages he needs to get to the end of the book so it's a procedure he has to carry out from beginning to end.  Does this sound harsh?  That's autism it is so crazy I can't be all American about it either. 

The first book I was ever recommended to read when Joel was nearly three and freshly diagnosed with autism and newly started on an ABA programme in Sydney, was called 'Let me hear your voice, A family's Triumph Over Autism' by Catherine Maurice and I was a total convert to ABA and all the other therapies Catherine recommended.  But I wasn't keen on the sugary way it was written and it lacked irony, humour and was too earnest and quite frankly unrealistic for every family who have a child with autism.  It was a happy ever after story about autism and I've already mentioned I haven't got a 'happy ever after' at the moment.  I am not getting that warm fuzzy feeling in my heart regarding Joel's autism.  I'm getting the confused beyond belief feeling about Joel's autism.  Like tonight for example.  I have bought the children yet more electric toothbrushes as they mysteriously disappeared a while back (mentioning no names).  So they disappeared this evening and I instantly knew where they were.  On the roof.  Again.  Why?  It's an autism thing and it kind of drives me insane.  I know it's a tiny thing to deal with it's just a toothbrush or two but when you're having to play inspector Morse on a really small scale every day with regards to Joel's autism it kind of drains the resources.  Kids do that anyway but ...

Regarding the Horse Boy book.  Please don't say to someone who has a child with autism the following.  Has he/she tried riding?  Re the book about a dog who helped a boy with autism- I tried to get to the end but the pain and angst I had to get through initially mirrored my own life so I simply didn't need more angst at the time.  I have made a note when feeling stronger to go back to that book as I hear the dog did miraculous things for the boy with autism.  But please don't say have you thought about getting a dog?  I know you're trying to be helpful but I have tried the horse.  Joel goes riding weekly and there are no earth shattering moments.  Joel enjoys riding now and no longer requests for the 'car' once he's on the horse., but I don't think we're going to get more than that.  Nor are there any dog earth shattering moments other than Joel loving his Grandparents' dog in Cornwall called Blue and trying to ride it like a pony saying 'horse' much to the dismay of Joel's Grandparents.  I have called the Horse Boy Camp and the cost for a week in a camp with the family was surprising so quite frankly I'd rather spend a week in the South of Portugal in the heat as opposed to damp Bodmin moor chasing miracles on a pony! 

I have been recommended to read a book called 'For the Love of Ann' about a lady who according to Joel's swim instructor Chris was 'just like Joel' but grew up to surprise those around her as she obviously overcame a lot of her autism and so I've ordered it.  I may even suggest it for my book club.  Talking of book clubs I've just joined one and the book is so mundane it's almost enjoyable 'Mrs Palfrey at the Claremont' by Elizabeth Taylor is such a light read after reading all the books on autism the trials and tribulations of this protagonist feels like a walk in the park.

Ten Autism Challenges to deal with as a parent...

We all know parenting is hard work...my two year old Maxi is particularly testing at the moment and won't put his coat on, won't put his seat belt on without an almighty tantrum and numerous other things.  So it's challenging at the best of times with any kid even my gorgeous daughter Holly knows how to push my eject from seat button and crash...anyway with my son Joel and his autism it's in a different league...it's the constant demands of a child searching his way in this confusing world and whether he's trying to find the answers I don't know but try and figure these ten random autism traits of his....

Joel's siblings Holly and Maxi. 

1)  Rescuing Joel's Ipad (AGAIN), and various other sundries from the outside roof after returning from New York for four nights.....  It was soaked through.   Joel likes throwing things out of windows.   He has also taken a particular dislike to younger brother Max's bottles as they get slung out too and also a particular Winnie the Pooh book (AGAIN).   I dried the Ipad on the radiator and to my astonishment it seems to be working after a second soaking.  This is really good PR for Ipads as it's been sitting in the rain for four nights.  But now discovered the password isn't working...

2) Running half way up a beach after a kite TWICE after Joel let go of it ON PURPOSE so that he could see a kite fly off.  Nearly killing myself to jump on it to rescue kite.  With staring gormless onlookers not catching it as it passed them..  Why would he do that?  Just because...he also does it with any helium balloon he gets given or any balloon for that matter....Just because...really there is no explanation for it...that's autism for you

3) Stopping Joel from stroking mens beards or moustaches.  He went through a funny stage because his school bus driver in Sydney had a goatie and indulged Joel's curiosity to feel the texture of a beard. I know this sounds weird but he was a good man.  Autism is about sensory processing and Joel does not process his senses in the same way we do...believe me I'm still trying to find out how this process works.  I'll do a blog on it when I do find out.    So this meant that Joel thought it ok to go up to any man and stroke their beard.   He's not doing it now after much disapproval from me.  Thank God.  Although he's not great at giving people space and will go up to them and stare close up.  I am impressed with this as his eye contact is good when he does this and with autism eye contact is usually pretty bad so you sometimes have to take the good with the bad in autism and make the best of it.

4) Nicking chips from a man who was just about to pick them up from MacDonald's.  Just because.  Joel knows no boundaries.  We're working on it.  Luckily said man and friend seemed to have a sense of humour about it.  Which reminds me it's a good idea if you come across a child with autism to go easy on said parent/grandparent/carer and child in this sort of location.  Even if the child looks pretty normal there's probably something going on with them which is more than meets the eye.

5) Watching Joel climb into a rowing boat whilst on holiday and having to wade into water and mud to get him out of said boat to safety.  I did leave him in for a while though as he was so happy and calm and LOVES being on the water. 

Joel enjoying the rowing boat.  How did you get there so quickly?

Where are you going Joel?  Whose boat is that?

Joel on the water at Dittisham.  We often say he'd make a great sailor or fisherman as he's always happy on boats

6) Losing Joel age 8 on a Cornish beach for what seemed like an hour but was probably about 15 minutes.  A lifeguard had put on the load speaker could Joel please come to the lifeguard van.  I told them point blank Joel would not be able to register this request but thought it worth doing anyway.  It turned out after much panic that Joel was happily in the sea jumping some big waves.  Thanks Joel!!  A few more wrinkles there for me then.

7)  Joel splashing a young toddler getting in his personal space to the response of very uptight parents 'you'd think he'd know better at his age'...to which I didn't reply as really sometimes I have the energy to respond to other people in this type of situation and other times I don't.  This time I didn't but thought how unhappy they looked in any case so with some people it's just not worth it!

9) Joel waking up early any time from 4am and proceeding to sing/make noises/laugh/ get up and put all the lights on.  He's also regressed a bit with the night time bed wetting so changing sheets at this time is probably the worst thing about this thing to do with autism.

10) Joel not hugging much but when he does it lights up my life and I am particularly taken aback.  For example today at the llama park we visited at Ashdown Forest he was very affectionate on the walk around the park and looked me in the eye, smiled and hugged me!  This made my day and made the trip worthwhile just to receive this simple affectionate gesture!  But believe me with autism this is massive as he was making a connection and often you may not get a connection from him in days.

Look I could go on about the negatives but there are so many rewards along the way like the carers who work with Joel who adore him and say what  a pleasure he is.  One was on the phone to me today saying how wonderful he is and how polite and confident he is.  Wow that blew me away it brings a tear to my eye when I hear something like that as I think we must be doing something right .