Lock down, Autism and Dogs


Sometimes I go into 'lock down' when encountered with this huge thing called autism. 

One friend of mine who's son is in the same class as Joels said she goes into 'shut down' mode when her son displays so many autism behaviours that your body somehow protects itself from this destruction that happens right in front of you and you just have to close up shop and let it happen.  Examples are when Joel has got creams out and smeared them everywhere, emptied food from kitchen cupboards, peeing on the floors around the house. 

That last behaviour of Joel's though has really got to me as I can't seem to control that one and I am supposed to re-direct him to the loo and not say anything but my instinct is saying the opposite. 

Joel can pee in the toilet but for some reason he's got other ideas at home at the moment.  The good news is he's not doing this at school as he has one on one support there but at home it's a different story.  With Holly (7) and Max (3) around too I can't supervise Joel all the time so he'll just get on with these behaviours which with a kid of 2-3 you'd expect maybe, but not one who's nearly 10.  Yikes.

I have been to see Karen incontinence nurse of West Sussex this week to discuss strategies.  Pictures, signs, rewards (we decided non sugar polos could be an option and Karen suggested haribos).  Please Karen can you just come to my house and be on his case and not leave it all up to me?  That is just not going to happen.  Like most of these services I'm left with paperwork but not results.

This is why so many things in life which would have worried me before are so not important now so that's a good thing I guess.  

In my pilates class this week I saw a fellow autism mother who has a child Joel's age who goes in a push chair when she's out as she can't control her child if she was walking so I felt grateful we can walk with Joel when we're out.  Her child also has seizures so it's a constant strain for her and I could see a haunted look on her face this week.  Do you offer sympathy?  Yes but not pity.  Anything but that I've had enough dished out to me for a lifetime so not giving it to her.  Though I do talk to her when I can about what's going on with Joel so that she can maybe chat to me.  We don't really know each other so it's not like just because you both have something in common you have to automatically set up a support group.  



Holly, Blue, Joel and cousin Bea at Granny and Grandpa's in Cornwall

Holly wants a dog for her imminent birthday coming up in a week.  I said we'd get one if it was trained and looked up dogs for the disabled as you can get dogs for autistic kids now.  But they are based in Oxfordshire so will only give dogs to autistic kids in the area.  They offer something called PAWS http://paws.dogsforthedisabled.org/ so am looking into going to a workshop to find out about how to train a dog for a child with autism.  I think I must be mad to be thinking about this but Joel, Holly and Max love dogs and love their Grandparent's dog Blue and I do think a dog could help Joel with communication and maybe these behaviours he gets into.  Having a dog may break the cycle of these behaviours and bring so much to the family life maybe disentangling the many parts of autism.  Then again it may be like toilet training not one, two but three members of a family and not so into that part.

Respite in Portugal for two nights

I think I lay here glued to the spot like this for two days solid while Jake was working and I was so grateful for the break.  Don't underestimate the power of rest and recuperation.  I am very proud of my toenails too.

Holly's blog

 

 

Holly my seven year old daughter wants to start a blog.  Here's her first page as she envisages it.

 

Here is her First Holy Communion cake design for a few weeks time. 

She's a very industrious girl and always has a project on the go.  She has a list of all her teddys and what they are called and how old they are.  (she has a lot of teddies).  So I was surprised at this book she has about them.  I don't remember doing any of this.  In any case I preferred dolls and she prefers animals.

Holly is the best sister Joel and Max could have.  At a recent parent's evening her Welsh teacher was welling up talking about her and said she is kind and a peace maker and also funny at the same time.  She's got amazing qualities.  Whether Joel brings them out in her I don't know but I do know she's one in a million and I'm very blessed to have her.

 

Music evokes memories

No other music is more profound to me than Delius 'The Walk to the Paradise Garden' as this was the sound I heard when walking into the church at my father's funeral. 

It was heart wrenching and at the same time a comfort and empowering to hear this music my father so loved.  The music reached a crescendo and it all seemed quite dramatic but I'm sure that's how my father would have wanted it as he loved Delius On hearing the First Cuckoo in Spring.  I love it too and play it to think of him.  This is probably the closest I get to him when I hear this and Gershwin and other music he loved like Holst's Planets. 

The Academy of St. Martin in the Fields – Delius: The Walk to the Paradise Garden (Intermezzo from "A Village Romeo and Juliet")

When I hear music on the radio which my father liked I often think it's a sign.  The biggest sign I had recently of him was when I had an arrival of an old dresser I got off eBay complete with an old newspaper in the dresser drawers from 1971 from Bideford, Devon and there was an advert about Edgehill school which is where my father worked as a bursar in his final post.  He was already retired but they wanted a good bursar in place to troubleshoot for them but he ended up staying longer than planned.   Surely that was a sign?  It's like he's reminding me he's there looking out for me in some way.  It was very coincidental and this dresser had obviously been sitting in a dusty old house for years without being used although I've now painted over it in Farrow and Ball's Cornfield and somehow brought it up to date.  I love it when things like that happen and I'll keep the newspaper in the drawers as somehow it would be sacrilegious to remove them.

Joel loves music and is currently singing a hymn he learnt at Lourdes beginning with Alleluia Praise the Lord which he joyfully sings on his travels.  He also likes Aha 'Take on Me', Alesha Dixon and Pink according to another special needs girl who stays with Joel on overnight respite at High Trees and said to me I should get him these albums of the latter two as he enjoys this music.  When Joel's in bed at night and his music has stopped playing he shouts out 'MUSIC' pronounced 'MUJIC'!   So we have to go upstairs and turn the music back on.  We're trying to teach him to turn the music on himself but patience is a virtue....

Joel enjoyed his half term holiday and always does get so much from seeing all his Grandparents in Cornwall.  His Grandparents make sure he has music by his bed and Mozart is regularly played at bed time.  I wonder what he hears and if it's every pitch of the music as he has perfect pitch and his carer Sinead who is also a singer said they sang together and Joel sang a duet with her and gave her goose pimples as he anticipated her note and matched it perfectly.   Maybe we could find a choir for him or somehow bring this musical side to him out and give it a purpose.  I know he's gifted in this area.  Until we make him a genius for now every time Aha comes on I'll think of Joely and my father when Delius comes on and think how does music evoke so much?

Joel on May half term 2013 Cornwall holiday

 

Dana International - Eurovision Song Contest 1998 and my Israel Experience

Dana International after winning the Eurovision Song Contest 1998

I can claim to have met some really random d list celebrities if you can call them that and the one I am most proud of is spending the night with Dana International after she won the Eurovision Song contest 1998.  I was the only Brit in her hotel room sharing the glory and it was probably one of the most entertaining and exciting evenings I have ever had as Dana  and her entourage were watching themselves on the news having won Eurovision and were buzzing, though it was funny seeing her without her wig on.

Apart from playing tennis with Phil from East Enders in Cornwall and on to a BBQ at his house in Falmouth with Billy from East Enders ( he was very polite and gave me a lift home like Cinderella when I really did think there was no hope of any romance with him) and once meeting Paul Daniels who wanted to go to bed with me when I was 16 if I picked the Ace of Spades when I demanded he do a card trick.  When I asked where Debbie was she was back at the villa apparently (we were in La Manga Campo de Golf in a bar and he was lurking in the bar in the early hours).  I did pick the ace of spades but I wasn't going anywhere.  It all sounds very dodgy now doesn't it.

So by the time I found myself with Dana International I had truly reached the dizzy heights of fame and felt privileged to be asked to the after party.  'Diva' was a  very catchy tune wasn't it ?

http://www.youtube.com/watch?v=M5lkNj0kx0k (I am on the credits under 'Delegate Services').  This is seriously funny.

I was the International Delegate services co-ordinator as we were hosting Eurovision in Birmingham in 1998 or something to that description which meant translating letters to all the 25 or so countries taking part and making sure they were all happy which included looking after 25 guides who in turn were each looking after 25 bands from their respective European destinations.  I hit it off with the Israeli guide instantly and we became friends hence why I joined his gang at their after party celebration in Dana's hotel room.   I was invited to Israel soon after!

I joined Guy the guide and his friends in Tel Aviv and immediately loved the country.   I loved the Israeli's and their attitude and charisma and we ended up travelling around Israel reaching the Golan Heights and the Lebanon borders where the army guarding the borders suddenly brought me back to the tensions going on in this vibrant country and it's borders.

We travelled to Jerusalem and walked around the gardens of Gethsemane and watched the fascinating people at the Wailing Wall. The Holocaust Museum was probably the most memorable site and resonates with me most.  Inside the Children's memorial with the simple calling of the children's names was the most earth shattering experience.  These children will never be forgotten and the visit to this memorial has never left me and it is a very necessary reminder to all.  I hope to take my children there some day.

Floating on the Dead Sea was pretty cool and I remember Lake Galilee being one of the most beautiful places I've ever been to.  My childhood images of Bethlehem were shattered when I arrived at literally a shell where evidence of bomb blasts were all over.  When I visited Jesus's birth place in the Church of the Nativity in Bethlehem it was under the church in a grotto and a hole was presented on the ground with marble flooring.  I don't know what I expected - some straw and an old stable maybe?  This was far from my expectations. 

I digress - but If it wasn't for Dana International my life would be a little less richer.  I hope she's still having a wonderful time in amazing outfits with feathers sticking out everywhere.  She is one of the worlds most well known transsexuals and also voted in Israel in a pole as being the 47th-greatest Israeli of all time.

Eurovision will never be the same for me as I will always remember Dana and somehow our UK entrant Bonnie Tyler doesn't really do it for me, but I hope she wins it tonight in any case! 

Dana did enter a few years back for the second time but didn't win.    I don't follow Eurovision and I didn't ever really take much of an interest in it and always get a bit worried when I hear people are having Eurovision parties!    I loved Bucks Fizz and 'Making your Mind up' when they won when I was in primary school and seem to remember buying the single and copying the dance with my friend.   

Bring back Dana that's what I say, third time lucky next time?

Flag Down

I was so touched at the following email received the other week about feedback from Joel's cub sessions from cub master Jok.  I honestly thought as I was reading his email entitled 'Flag Down' that Joel was going to be booted out of the cubs.  It has a very official tone at the start and I thought here we go...Joel's really done it now...but to my relief Jok picked out a positive in Joel's singing voice! 


Just thought I would drop you a line to let you know that at flag down yesterday Joel decided to sing during the normally quite bit and all the leaders agreed afterwards ( and indeed the District Commissioner and Group Scout Leader how we're also present) that is was really beautiful.

 I don't know if you hear his singing often, but it was a real treat for us.


Jok

Joel on a Cubs outing in East Sussex having just had a great time going tunnelling

My heart melted for this man who I thought was going to be a hard nut to crack.  But Joel has a habit of cracking hard nuts.  He tends to get the best out of people.  He will be singing on a train full of commuters and bring a smile to a face.  He will try and nick someones croissant on a street cafe because he can and I will run after him apologising profusely to said cross person who will soften once I explain the situation.  He really is going to give me a heart attack I think but at the same time I don't know it any other way and I love him with all my heart so it's just tough luck I guess if someone doesn't like him or the things he does. 

An example of someone who really didn't like Joel's peculiar traits recently was a rather large lady sitting with a bunch of conspiratorial looking mothers watching our children swim (I was in the pool with Max age three as it was his first lesson and he was terrified of the swim instructor who I must admit did look like a witch and I have no other way to describe her.  She also had a piercing voice which didn't help).  So I brought along Joel and Holly age seven to the swim class too as the pool had a section for free swimming.  But of course Joel didn't want to sit or swim in the free swimming area but he wanted to sit and paddle where the lesson was as this was the only part of the pool that had a ladder to enter the pool. 

Joel was happily paddling away minding his own business and the teacher didn't mind nor anyone else until this lady came up and said he was disturbing her view of her child who was having a swimming lesson and could he please move as she is paying good money for these classes.  Sinead who was with me to help out with Joel was standing up to this lady and trying to explain Joel had austism to which this appalling woman said 'autism aside he's getting in the way of my view'.  I moved closer to the conversation or let's say I waded towards them with Max who was screaming in the lesson and not letting me out of my sight.  Fat Lady then repeated the story to me to which I immediately told Joel to move as it just wasn't worth having an argument and I knew I would never be returning to this hellish swimming lesson! 

Sometimes it's just not worth fighting these mini battles - I have to choose my battles.  And believe me I have fought many for Joel.  Just this one was too small and too unworthy.  This lady was never going to change.  I wasn't going to try and make her take a different stand.  Although if I was feeling really wilful I would have told her if she couldn't see her darling boy swimming she should get off her fat backside and start moving about a bit and then she may then see him and lose some weight and to stop being a miserable certain type of animal etc etc.  But I felt quite good about not divulging into all of this.   Especially as I didn't want to give other conspiratorial looking mothers who were sitting with the Fat Lady any other form of entertainment to the one they had already had.


Back to Jok.  This was a man who sat me down with Joel and another cub official at the start of Joel's cub experience with a somewhat scared and confused attitude to Joel age nine with severe autism joining his cub group.  He's a meat and two veg type and quite gruff and what my Grand mother would have described as 'manly'.    Jok had never come across this sort of thing and certainly none of the other cub leaders had.  He admitted this and said his group was a back water middle class group where people didn't experience a child with autism.  Joel's track record in Beavers had come before him across to the cubs about his love of painting (he smeared paint on the walls in the hall rather than on a poster so rather a lot of clearing up had to be done).   


Sinead Joel's carer and Joel at Cubs

So we started Joel off in the cubs with quite anxiously and I would be relieved to hear from Sinead that it had gone well and gradually Joel has really taken to the group and they have taken to him.  Sinead says Jok's face lights up when Joel comes into the room.  It's because Joel has endeared himself to Jok as he loves Jok and goes up to him jumping up and down so happily when he sees Jok.  Jok didn't know how to take this but he is getting used to it. 

In a recent cub inspection by Jok in a uniform inspection line  up (hope Joel hadn't chewed his toggle off again).  When Jok got to my autistic son Joel leapt out to Jok and said very loudly 'I got you!' which gave Jok a minor heart attack probably but apparently he did see the funny side to this.  Joel gets away with these things when another nine year old couldn't.  Joel likes to smear mud all over himself when going on cub outings to the Ashdown forest.  Other cubs won't be doing this but I'm sure they would secretly love to be doing this.   But they don't have the same sensory needs that Joel has.  They accept him though.  When going on a recent trip to the park Joel said to a boy 'hold hand' and the boy looked taken aback (it's not cool to hold hands when you're a nine year old boy especially with another boy) but this boy did hold his hand without question.  

Yesterday at cubs they were doing ballet.  Yes ballet.  All the other cubs were not taking part and some were sent out of the room as they were being rude about ballet and being generally very boyish about the whole experience.  Not Joel.  He was jumping up and down enjoying the ballet and loving the music and copying Sinead doing basic ballet moves!  It's Billy Elliot in the making!  You just gotta love it!   

The point I guess I'm trying to make is if everyone kept an open mind like Jok even though they admit they don't have a clue about autism but are willing to go with it and put up with the peculiarities that autism brings with it, then the world would be a brighter place.  I am sure he has wanted to control the environment when Joel is in like the Fat Lady, but  we can't control people least of all people with autism but we can try and help and guide them and teach them approriate behaviour and playing but with that it's not plain sailing.  Every person who wants to accept, include and help children like Joel will be making a difference.

Keep bringing a smile to our faces Joel we love you.

 

Joel with his beloved 'Granpa' and Granny today in the garden

Parents pack out East Grinstead restaurant to raise awareness of autism

Thursday, March 28, 2013

East Grinstead Courier and Observer

By Sam Satchell

 

A charity curry was held in support of an "invisible disability".
Parents and children packed into Nizam, in East Grinstead High Street, for the meal which raised more than £2,000 for Step By Step – a specialist school for children with autism.
The event was also designed to provide a better understanding of the condition prior to Autism Awareness Day on Tuesday, April 2.
Parents of autistic children face a daily challenge and issues can include shouting, crying, sleepless nights and developing specific routines.

Meridian FM presenter Alice Gordon-Clark, whose 9-year-old son, Joel, attends Step By Step, said: "I think it's very important to  raise awareness of autism, because some people aren't aware of the signs of autism. It's a hidden disability.
"When Joel was younger, people thought he was a bit naughty, but that was obviously his autism.
"He joined the cubs and has done really well. Joel's behaviour is so good now because of the school, but autism can also be treated with diets and therapy."
East Grinstead mother-of-two Amanda Clark, whose 10-year-old son Archie goes to another autistic school, Manor Green in Crawley, said the condition can be very unpredictable.
She said: "Archie is very bright and in lots of ways, he's just like any normal 10-year-old boy.
"But he can't keep himself safe. He might run out in the road. I have to have him by my side at all times because it's like constantly being on a knife edge. His behaviour is very unpredictable.
"Our lives are constantly affected. We can't really go on holiday because as soon as he's out of his routine, he can go on a downward spiral. It's trying to get people to understand that this is an invisible disability and that's what makes it so difficult.
"We are not irresponsible parents; we are brilliant parents struggling with children that have very specific needs."
The curry lunch, on Sunday, March 17, was suggested by Alice and organised by the Step By Step Parents' Association. Committee members are due to meet with the Sharpthorne school next term to discuss how best to spend the money on equipment for the children.
Both Alice and the school staff thanked everyone for their support.