Disability Rocks

In June 2011 , Richard was made redundant form his job as a manager in the NHS. Shortly after this during a holiday in Ibiza the concept of Disability Rocks was born. During our stay in Ibiza we became very aware of all the club and party scenes and began to wonder just how accessible these events were for individuals with disabilities. Some friends took their children along to Ibiza Rocks and we realised that it would be impossible to take Max along to an event like this . On our return several sets of friends with children were talking about their experiences of attending festivals again we realised that attending a festival with Max would be very difficult if not impossible. These realisations triggered Richards dream of a concept of creating a festival that could be accessible to everyone.

Richard knew Bruce Fowler the Manager of the fabulous Nell Bank centre in Ilkley. It became clear that this would be the perfect accessible venue for the first festival to be held. He approached Bruce with his idea and to our delight was met with enthusiasm and positivity. Bruce is a truly inspirational person who has created a fully accessible out door centre which provides a significant inclusive environment and modern purpose built facilities.As is clear from the website Nell Bank is set in beautiful woodlands in a wonderful part of the Yorkshire Countryside. www.Nellbank.com.

 Having secured the venue, the next task was to organise some bands and performers. Richard began to tentatively put the feelers out and was amazed at the enthusiasm and generosity of people who were willing to give their time, energy and unique skills to make this event a success. We are extremely grateful to all those people who given their time and expertise to help make this event happen. 



It has been a steep learning curve for both of us, Richard in organising bands, photo shoots and submitting grant applications. I have taken on the Social Media side of the organisation and have recently had to familiarise myself with the art of tweeting!

We are both so excited about this event, what started as a holiday dream is fast turning into a reality. It will be a very emotional day for us probably requiring the wearing of dark glasses all day, whatever the weather! We intend to have a team of volunteers " helping hands" providing assistance to anyone who requires it. Emily has already ordered her festival wear and will be wearing wellies, denim shorts and a flower in her hair, just hope Richard doesn't decide to follow suit!

It will be wonderful to see people of all abilities enjoying the music, arts and comedy that will be on offer. We both feel passionately about improving societies' view of disability, we hope that our event will help to in some way send out the message that disabled people are talented, creative and resourceful and have a right to enjoy themselves just like everyone else. By showcasing the talents of disabled artists alongside providing an accessible venue we hope to create a wonderful experience with something for everyone irrespective of their abilities or limitations.

The finale will be sung by Inspiration-a vibrant  Community Choir .The resulting sound floating down across this part of the Wharfe Valley will be amazing.

For more details and to purchase tickets go to www.disabilityrocks.org 

Small step,giant leap.

Max's development progresses at "Max Speed, in Max time", like everything else about Max its Unique. One thing we have learnt to do over the years is to accept this, try not to worry when it seems to take forever to achieve things. The beauty of having a child with Special Needs is that other parents may note the milestones ,but we celebrate the inchstones, when those achievements come they are so sweet and the joy of them can lift me for days.

Today is a good day. We seem to have made a couple of leaps forward. Max is 8, he will be 9 in June. We started toilet training him at age 4. For the first 2 years he would have accidents numerous times a day. Over the last 2 years things have improved very slowly and nowadays he only has the occasional accident, mainly caused by him being too busy to go to the toilet. We still use pull ups at night but over the last few weeks they have been dry. This morning Max woke at 7 , his pull up was dry and he did the biggest wee on the toilet to which we all applauded. Now this may sound like a regular "normal" occurrence in most households but to us it means so much. Many a time over the years I have wondered will Max ever achieve full continence? will he always need to wear pads?. Now Max may take a few more weeks/ months before he is fully dry at night, it doesn't matter, we know he can do it now and to us that means the world. To all those parents out there with little ones with Special Needs never give up and remember it may take so long to achieve even little things but never stop believing in your child and don't forget to celebrate those inchstones.

Newborn

Max was born at 39 weeks and weighed in at 6lb 12oz. He appeared perfect and the Medical and Nursing staff remarked on what a beautiful baby he was. We were delighted with our long awaited little boy and Emily was thrilled to meet her new brother. Over the first two days in hospital a couple of little niggles fluttered through my consciousness, Max was very sleepy, cried like a premature baby and never once opened his eyes.Several of the nurses commented on his appearance and one Nurse even asked me if my husband was Oriental, a comment that caused Richard much amusement.When it came time for us to be discharged home  I mentioned my concerns to the Pediatrician undertaking his examination and she reassured me that he was fine. 

We were discharged home on 26 TH  June which was  my Mums Birthday,I remember her saying "he was the best Birthday present she could ever have". It soon became obvious that Max was struggling to feed from the breast. The Community Midwife visited every day and I tried everything possible to get Max to feed from the breast. After 10 days ad a visit to A and E , I was told that Max had lost a large amount of weight and would need to be bottle fed. This also proved difficult with him seeming unable to suck from the bottle , eventually we used teats designed for premature babies. Each feed took over an hour and Max had to be woken for feeds. He was slightly jaundice so his poor feeding and sleepiness were attributed to this. He was such a lovely placid baby, feed times were difficult but we soon learnt to accept that it would just take time.  With hindsight I realise that these problems were due to his Chromosome disorder but at the time I was so delighted with the whole experience of being a Mum again I just got on with it. Apart from at feeds Max was a lot easier than my friends babies, I secretly congratulated myself on being a relaxed second time Mum and thought that his laid back nature was due to this. I had no idea of the roller coaster ride we were about to undertake.

No answers

I promise this blog won't just be about me moaning. I am most of the time a very positive, glass half full sort of person. I have long since learnt to accept Max's disability and a lot of the time wouldn't have it any other way. I don't spend time thinking what would Max be like without his chromosome deletion, because he wouldn't be the Max we know and love without it. Max is funny, happy, full of energy and melts my heart on a daily basis. The love, pride and admiration I feel for this little boy is intense. Max has and continues to amaze us with his determination and sense of fun. He has made me appreciate things that before having him I took for granted , his innocence and the pure joy he experiences from everyday things is infectious. There is a but and that but punctuates our lives on a daily basis. The but is Max's behaviour. This evening we have experienced over an hour of Max hitting, biting ( us and himself), kicking, head butting and attempting to destroy our home. Why? I don't know the answer to " why". Is it behavioural? is it sensory?. How do we stop it? We have had years of input from a behaviour team, a learning disability nurse and a Psychiatrist. We have spent a small fortune on therapy. We have and still do use visual timetables, behaviour charts, time out, rules boundaries. He takes medication to attempt to control it. Things have improved in some ways, eighteen months ago he displayed these behaviours indiscriminately, at school and with carers. Now he saves these outbursts for Richard and I. They are shocking, scary and violent. They leave us and him drained and exhausted. They isolate us and him and at times leave us feeling desperate. It's lonely having a child who attacks himself and others. We are as a family pretty resilient. We try to deal with the crises and move on, but there are days when it feels so bleak and hopeless and I guess this evening is one of those days. We cope by drinking far too much wine and by getting some fantastic support from our carers. We both worry about what will happen if this behaviour continues as he grows older. Currently the pressure on Richard is immense he is the only one who is strong enough to restrain Max, which means he needs to be around almost all of the time.Most of all we both feel for Max , it must feel terrible to feel this intense rage, it's almost like something takes over him, he ends up red in the face and exhausted.I will continue to look for answers and solutions but currently there don't seem to be any that we haven't tried. We just have to hope that as Max's speech improves that he is able to find other ways of expressing himself that doesn't involve violence and self harm.

The First Post

On 24 th June 2003 our second child Max was born.Soon after Max's birth it became clear that he was not following a typical developmental pattern. At age 15 months a Paediatrician told us he had Global Developmental Delay and low muscle tone ( hypotonia). It was to take a further 5 years until we discovered the cause of these difficulties. Max has a rare genetic condition caused by a microscopically small deletion ( missing piece) on chromosome 16. I intend to write about our journey with Max, his condition and the impact it has had on our family and our lives. I will use this blog as an outlet for my thoughts and emotions and hope that in doing so it will act as a form of therapy. Our life has become " the road less travelled" I hope that by writing about it I can help my fellow travellers on their journeys. When Max was small I was told by a parent of an older child with a disability that I was in for the biggest roller coaster ride of my life, I don't think I could have imagined then just how true her words would be. In the past eight years I have experienced the most extreme emotions, I have become stronger than I ever wanted to be.The strength of my amazing husband and the compassion of my beautiful daughter combined with the love and support from my family and friends has carried me through some of my darkest days. Max is truly unique he is complex and challenging and the sweetest little boy you could ever meet. 

Floppy, bendy boy aged 2.