Cornwall, Wedding and Hamsters

Chilling out after a swim August 2013

Joel had a wonderful Summer and was the calmest yet this holidays.  So when we got back to Sussex he kind of crashed and this change for him hit him quite badly.  The comfort of being with the Grandparents in the tranquil country to being home which is still tranquil and still in semi-rural setting still took him time to adjust.  I think we're over the worst of it but he hadn't been sleeping or being the relaxed boy he was on holiday.

Joel on the beach Summer 2013



Joel at his Grandparents resting on the sofa where he likes to chill out

For me personally who has a child with severe autism I would say the most important things I want for Joel before anything is that he's :-

a) calm and not in distress as the latter can happen in bouts and this gets very stressful as you just have to ride it out and wait until the storm's over and this can last either a few days to weeks.
b) sleep.  This is majorly important for any parent but sleep is a precious commodity in the world of autism and when we get it - i.e. when Joel sleeps we are truly grateful. 

Since coming back from Summer in Cornwall Joel has got into his weird habit of going in and out of the bathroom, climbing into the bath (only when it's empty), and then putting his head on the floor like a ritual.  He has also been putting his light on and off and the bathroom one and all the other bedrooms and rooms to the point where he's taken off the light cap switches whatever the technical term is for that...he's also been in a sort of hyper mood with lots of anxiety. 



Max, Holly, Joel, Sinead relaxing after a swim

This brings me back to his behaviours last year  and reminds me that when he goes through good patches you never take it for granted.  Autism behaviours come and go and sometimes you can eliminate one behaviour and then be hit with another.  So you think you're moving forwards with a behaviour like this ritualistic behaviour had gone for  months yet it came back....and then the light switching thing takes on a new meaning for Joel.  

Sinead, Joel's carer said that it's perhaps by switching the light on and off it's a calming thing to do for him having read The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida, Keiko Yoshida (Translation), David Mitchell .

Joel at th eMinack theatre, Cornwall with Sinead

 

There are reasons why children with autism do these seemingly pointless things and this amazing young boy manages to explain some of the reasons why they do these things.  This is the first book I would suggest you read if you want to get an understanding of autism without all the cures and the behaviour management.  It actually celebrates autism and all of it's complexities; this boy is a true hero and shows he's compassionate, deeply sensitive, hates the fact he could be upsetting anyone and craves to be social and is loving.  These are all features which are generally written off by most people who assume somehow these aren't given to an autistic child because they can't necessarily display these signs or tell you they love you it doesn't mean that they don't feel all of these things.  I know Joel is all of these things and by reading this book it really opened up his world to me.

 Joel, Max, Holly and cousin Evelyn and Atticus

When we got back from Cornwall we went to Uncle Gavin and Aunt Laura's wedding and Joel did amazingly well in the service apart from saying 'oh no' once which made everyone laugh.
I was so proud of him that day as his behaviour was impeccable and all the sleepless nights seemed to fade when you have a day like that.  He's come a long way and I thank his school for helping with these behaviours tirelessly.  Just this week his class teacher and speech therapist came to the house to help with speech and said to get Joel to talk we can sort out the washing and match socks, pants (he calls them undies from Australia days) and to get him to say what the word is and put them away and if he says socks we have to add 'green' socks or a word on to the one he said so he can start putting two words together.  As he was sorting these clothes out I had a glimmer of hope that he may one day have a job.  I later told Jake this and he said he doesn't look at it like that he just doesn't put any expectation on Joel in the future.  Jake was just proud he was talking and labelling some clothes.  Something we only dreamt he'd do a few years back.  Of course Jake wants him to do things but he doesn't project in the same way I do!

Gavin, me and Harry my brothers at Gavin's wedding

 My boy Joel at the wedding August 2013

Holly with her new hamster Sammy

We also have a new member to the family.  Sammy the hamster.  He's ok apart from the fact that Max let him out for a few hours with me chasing it around the house.  Joel likes him and stroked him and even said 'hamster!'  So it's that's got to be good.  He's also sleeping a bit better and seems calmer.  I did get reinforcements in - my friend Fr Peter said a very powerful prayer in his room and this was before I got the geopathic stress guy in (acupuncture on the house man).  Believe me you try anything to get your child in a calmer space.  Anyway it turns out I don't need the latter person after Fr Peter came by and some friends came by with some Lourdes water after Joel poured mine away!  Life is never dull...

 

Woodlarks Adventurers Camp

I can't be the only mother in the world to admit that the Summer holidays fill me with dread?  Especially  if faced with a child with special needs.  So am happy to announce Summer '13 was the best yet with my children.  

It started with Joel going on a camp for disabled children called Woodlarks Adventurers' Camp for boys aged 10-18 with disabilities in Farnham, Surrey.  http://www.woodlarks.org.uk/ 

It's the most amazing camp you would want your child to stay on with an outdoor swimming pool, beautiful grounds and Joel stayed in a purpose built chalet with two helpers Zoe and Emma and Michelle who was supervising.  Michelle has been on this camp for over ten years and I knew immediately Joel was going to be in good hands under her care.  Michelle lives in Brixton and is a teacher's assistant in a special needs school and other volunteers were at school or uni with many studying medicine.  One doctor in the making Greg helped with Joel too and Emma and Zoe were Joel's helpers on the camp who were great with him.  Yet again I am amazed at these young people working with kids with disabilities like last year when I was in Lourdes with Joel.

Joel with Zoe, Greg and Emma

Joel on Aerial Runway

I couldn't believe Joel had a lovely chalet style room; I could even plug his cd player in as he enjoys music at night.  I didn't think Joel was ready for a tent just yet as most were out camping.  But Joel entered into the spirit of things and went to the camp fires joining in with everything.  Thank you Woodlarks and thank you to Bob Newport who is the camp co-ordinator who is disabled himself and in a wheelchair - 'I'm the man with no legs and one arm when you see me'.  He had a great sense of humour and years ago was scout leader to the camp 'cooks' who were now in their 50s and have been coming to Woodlarks since they were 13 to help out.  I still get bowled over by all these amazing people who choose to take time out of their work schedules to volunteer with kids like my boy.  I think the pictures say it all.  Joel was very happy there.  Bob said Joel will be able to come every year until he's 18.  What an amazing offer.  I took a leap of faith into the unknown (the nurse who met me when I turned up picked up I was a little nervous leaving him but immediately put me at ease).  

Joel Climbing at Woodlarks Summer Camp 2013

Joel on the Aerial Runway Woodlarks Camp

Bowling day out 

Earth Child - Joel with Zoe taking time out to meditate

Chilling out at lunch time on camp

Joel singing with Emma

So I went to Dorset and Devon to see friends with Holly and Max while Joel was in camp and Joel came down to meet us in Cornwall to stay with the Grandparents and had the best time ever but that'll come in another chapter.

Joel has had an amazing Summer with his family and for that first week of the Summer holidays with these wonderful young people.  That week made a huge difference for me and doubtless the twenty other parents or carers of the other kids there .  It gave me a breather and it gave me a chance to go on a road trip with my other two and spend time with them.  Max was particularly hard work that week but he's in his terrible three stage.  Someone said it was the xxxxing threes which I thought was a very apt way of describing it.  A stranger said I had my hands full when Max had a tantrum and I said 'you don't know the half of it' with a wry smile.  This was a break from the other with severe autism!  Hoping Max will get out of that stage some time soon and it's hard to tell as Joel age three was just a screaming wreck most of the time and didn't have any communication or social awareness and Max is very social.  Just a boy who's just getting to grips with potty training...that's another story.

I have survived this Summer unscathed and actually will miss them when they're back at school tomorrow.  But not that much.  Roll on tomorrow....thank goodness it's over!

Joel, Holly and Max enjoying a swim at home Summer 2013

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?