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.)