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