Tuesday, 17 April 2012

The Oxygen Junkie - Guest Post.

Fran aka The Oxygen Junkie has kindly written a blog post about Max and Disability Rocks. Fran may be only 14 but she is wise beyond her years. She has recently got through to the final 3 in the Amnesty International Young Journalist of the year. We are very proud of her and wish her good luck for the final on the 8th May. This is the post Fran wrote for her blog

Disability really does rock.

Ladies and Gentlemen, lend me thine ears!

This post is about disability.

Disability can be many things. It can mean a physical disability like paralysis, or motor neurone disease, or it can be a learning disability like Autism or downs syndrome. There are some disabilities with obvious symptoms, and some that aren't that visible.
I guarantee you though, that you will not regret letting someone disabled into your life. 
I know a little boy called Max Sutton. He is the most amazing child  you could ever wish to meet.
He loves cricket, badminton, his hamster Leo and standing in his pants like he runs the world.  Not even Paul McCartney has as much swagger as Max Sutton does.
(Read all about him at www.mumtochromoboy.blogspot.co.uk

Max Rocks. He knows he does. And Max thinks that disability rocks. Which is why his parents, Caroline and Richard Sutton have created a festival to rival the mighty Glastonbury. 

After having a bit of an epiphany whilst on holiday in Ibiza, Caroline and Richard realised that there weren't any disability friendly music festivals in Yorkshire, and decided to do something about it. 

Tickets are only £15 (£10 for young people and disabled folk) and the line up is spectacular, it has everything from bearded men with guitars, to witty comedians, to drum workshops to a 5 piece Jazz band.
All situated in the best place on earth; Nell bank, West Yorkshire.

Sunday, 15 April 2012

Boys and Fire

Fun in the garden.

An impromptu decision by Richard to burn some rubbish in the garden made two little boys very happy. Max can be so loving and playful and he is never happier than when playing with his friend from next door.There are days when you think things will never get easier then we remember that a year ago Max would have to be closely supervised, the play session would have probably ended with Max attacking his friend. His social skills and ability to communicate are really improving and now he is able to play without becoming angry and frustrated. It makes us so happy to think that Max can now play and interact well with other children. Strangely I think it is the added confidence that he has gained from going to Special School that has helped this progress.   

Monday, 2 April 2012

Acceptance or hope?

Those of you who have read my blog about the early days with Max, will know that at around the time of his first birthday it became obvious that he wasn't following a typical developmental pattern. In the space of a few weeks a bombshell was dropped on our calm and carefree  life. We began to juggle a variety of appointments and started hearing medical words spoken about our little boy. Words like hypotonia ( low muscle tone), dysmorphic features and developmental delay soon became part of our everyday lives.
 Not a week went by by without some form of appointment and often several. Max was seen by a Pediatrician, Neurologist, Psychologist,Occupational Therapist,Speech and Language Therapist,Audiologist,Orthotist and the list went on. In fact I felt that we were going for some kind of record to see every "ist" that existed. Our beautiful little boy suddenly seemed to become the focus of many Professionals attention and each one bought with them their concerns about what he couldn't do. It was rare for anyone to say anything positive about him and suddenly the things we had regarded as positive became an issue. His placid nature and passivity which was to us a bonus became a problem. His cuddly soft relaxed limbs became hypotonic or floppy.

 I can remember experiencing a variety of different emotions. They ranged from fear, what did this mean? what was wrong? was it serious? life limiting? degenerative? Would he ever walk? talk? go to school? ride a bike? I played the trade off game in my head, tried to work out what I could cope with and what I couldn't. Ironically the thing I feared most was learning disability. Some days I felt desperate, others I just got on with it, sometimes I would dip my toe into the world of special needs only to feel guilty and like we didn't belong there, yet it became increasingly more apparent that he wasn't like his peers either. So where did we belong? Where did we fit in?.

Each appointment bought with it a hope that maybe this time we would be given an idea of what was wrong, what was causing his difficulties and how we could help.  Each appointment was stressful and disappoiniting, Max often didn't cooperate with the Therapists and sessions turned into battles. I would ask questions like "will he ever walk" and "what does this mean" usually to be met by responses like " we are not sure, yes probably, but he is very floppy". At the time I remember feeling that it was all some kind of strange power game and that really they all knew what it meant but just didn't want to share it with me.
Max aged 2 years.
Looking back I now realise that they geninely didn't know how Max would develop, or what was causing his difficulties and what that meant for the future. One thing I do wish is that the Professionals we came into contact with had been clearer with us. I wish they had explained that although they were unsure of exactly how Max would progress that it was very likely that he would go onto have some form of learning disability. Instead over time this concept slowly became more obvious to us. I wish they had had the courage and confidence to share their experience and intuition. I wish more than anything they had encouraged me to enjoy him and to hope and to hold tight to that hope and never ever give up. Instead I think they confused hope for lack of acceptance. They viewed our quest for additional and alternative therapy as a sign that we couldn't accept Max's disability. 

Over the years I have processed many different emotions in my journey to understand and accept Max's disability. There is however a recurrent theme and that is the difference between acceptance and loss of hope. Max has a lifelong neurological condition, it will never go away and there is no cure. I accept this and even if I wanted to I couldn't change this. Accepting this is not the same as giving up hope. I still have hope, dreams and aspirations for him. I want more than anything for him to lead a happy, fulfilling life where he is accepted and loved. There were times when we wondered if he would ever walk,talk,run and ride a bike. He has achieved these things and many many more. I accept Max unequivocally for who he is but I will never ever give up my hope.