— Scope (@scope) January 8, 2015
At the Ricoh for the launch of Face2Face. Extremely good turnout for a great cause.
— Matthew Duffy (@coventryculture) January 8, 2015
I WOULD LIKE TO THANK ALL THE PEOPLE AT SCOPE FOR THEIR SUPPORT IN MAKING SURE THIS FEATURE IS ACCURATE AND FOR PROVIDING ME WITH INFORMATION TO HIGHLIGHT THIS GREAT CAUSE. I WOULD ALSO LIKE TO THANK LOUISE FOR ALLOWING ME TO INCLUDE HER STORY WITHIN THIS FEATURE. I FULLY UNDERSTAND THAT THIS WAS A DIFFICULT STORY TO TELL AND I APPRECIATE HER GENEROSITY AND WILLINGNESS ALLOWING ME TO INCLUDE IT HERE.
THIS IS BY NO MEANS THE END. IF YOU HAVE INFORMATION, CONTENT RELEVANT TO THIS EVENT WHICH YOU FEEL COULD BE INCLUDED HERE, LET ME KNOW VIA THE CONTRIBUTE TO COVENTRY CULTURE LINKS IN THE SIDEBAR OR BY EMAIL @ MATTHEWDUFFY11@ICLOUD.COM.
On Thursday 8th January 2015, I was invited to The Ricoh Arena for the launch of a new befriending service from the charity Scope. Face2Face is a service which provides parents of disabled children a chance to meet parents in the same position and through this, gain “the emotional strengths and practical skills to manage their family suituation”. There are currently 25 schemes running across the UK.
Face2Face services are available all over the country, from Preston, to Northampton, to Brighten & Hove, to Merthyr Tydfil. The event to which I was invited was to launch the Face2Face service in Coventry.
The event was attended by Coventry’s Lord Mayor Hazel Noonan, whom praised the work of the charity as well as the volunteer sector as a whole saying “”During my time as Lord Mayor, it never stops to amaze me when I go to organisations the amount of people who do things as volunteers. They do it because they want to help somebody, they want to help somebody less fortunate than themselves. They’re not doing it for any praise or financial gain, they’re doing it because they know what they do will make a difference to somebody’s lives”
The event brought together befriends to share their stories, one of such and with great thanks, CoventryCulture is able to share with you today. This is Louise’s story;
During our befriending training we were asked to share our own personal stories. I think I speak for all of the befrienders when I say this proved to be more emotional and difficult than any of us thought.
So today as I stand here it is to share a fellow befrienders story.
This is Louise’s story.
I fell pregnant with Daniel in 2003 after being told by doctors that it probably wouldn’t happen.
I had a few kidney problems during my pregnancy but finally Daniel was born and weighed 7.5lbs. He was healthy and beautiful and I and my husband Steve were instantly in love with him.
We loved being parents and enjoyed watching him grow and meet all his expected milestones. He was as bright as a button and walked for his 1st birthday.
I’m May 2006 things were changing for us as a family, Steve had a new job in Manchester and it was a great opportunity for us as a family. So we sold our house in Coventry and bought a lovely semi-detached property in Manchester.
I fell pregnant with our 2nd child in September and we were overjoyed. But due to developing health problems with my thyroid the pregnancy became high risk. I was placed under a consultant and found myself in and out of hospital.
Daniel had started nursery at this time and was doing well the teachers were really pleased with him.
But one evening whilst putting him to bed, reading him a bedtime story I noticed that Daniels mouth had started twitching and he was dribbling. Neither I nor Steve could get him to respond to us and we had ever seen anything like it before.
It only went on for a few moments and then stopped as quickly as it had started.
He settled down to sleep and he was fine in the morning but something about the incident bothered me immensely and I took him to our G.P. No one talked about what it might be he was referred to see a paediatrician.
We attended this appointment very unsure about what we would be told. We were asked numerous questions but then we were sent away being told not to worry he seemed fine and he wouldn’t need to be seen again.
I continued with my pregnancy, but doctors were now recommending surgery to remove my thyroid when I reached the 6months stage.
But at 23weeks I became incredibly poorly and admitted to hospital. The doctors said that due to my illness Daniel wasn’t allowed to stay on the ward and we as a family decided that Daniel should go to stay with his grandparents in Coventry for 2 weeks.
My parents drove him back to me in time to celebrate my birthday and I vowed right there and then that I would never let home go away again.
My illness had become worse and my operation had to be cancelled as the risk to myself and the baby had become too high.
Ciaran was born prematurely and was born by emergency C-section and he weighed 4lb 11oz and was quickly taken into special care. I don’t remember much after the birth as I was taken to intensive care and had 4 operations that weekend.
I finally got home at the beginning of June. 1 week before Ciaran.
Life started settling down and Daniel started school in the September.
He struggled to like his teacher and he was bullied.
The teacher approached me during the 1st halt term and was told that Daniel was untraceable and would never cope in school.
In May 2008 Daniel had a major seizure and we took him to the local hospital, we were surrounded by doctors. Daniel was injected with medication and this was the first time epilepsy was mentioned he was transferred by ambulance to the children’s hospital. Daniel was still fitting 6 hours later he was admitted overnight and I stayed with him. He didn’t sleep all night long.
Daniel was sent home once things had calmed down. And we were sent an appointment foran EEG to confirm whether he had epilepsy.
It was difficult to explain to family and friends and everyone reacted differently. I don’t feel that we were supported by the medical staff and we were left to research this for ourselves.
The EEG was done but we had a 6 week wait for the results which eventually confirmed he had Focal epilepsy. Daniels seizures continued and were hard to control. His school gave no support and his education problems continued.
In 2009 Steve got a job in Birmingham and in December we moved to a property back in Coventry close to both of our families.
Daniel started Parkgate primary school in January he was now in year 1 and had a brilliant teacher who soon put additional help in place for Daniel. He was the diagnosed with dyspraxia and over flexible joints which explained his difficulties with reading, writing and accessing all areas if the curriculum.
The school were supportive and did everything they could for Daniel and most importantly Daniel was happy.
He had a good consultant and we were learning to come to terms with all the different diagnosis.
Daniel struggled in spite of all the extra help that was being given.
He was now in year 3 and evidence was being gathered to start applying for a statement.
The gap with his peers widened and Daniel was becoming more distressed about this, he was struggling to maintain friendships.
Then as he went into year 4 he was sent to see an educations psychologist it was then that I learned she believed Daniel to be autistic. We were shocked and yet again left to find out about what this was and more importantly what this meant for Daniel.
It was through my own research that I realised that Daniel was definitely autistic and it was going to be a long and ongoing process.
I have recently received the proposed statement for Daniel and I don’t mind admitting I am finding this process difficult.
Steve and I are looking at secondary schools for Daniel as he is in year 6
Daniel struggles with school but is happy there.
He is a kind, gentle boy who is well liked. He is helpful to everyone and never ceases to amaze me.
He sees the world in a beautiful and special way.
He and Ciaran are very close and they accept each other’s differences. I am incredibly proud of both of my boys and believe anything is possibly for both of them.
View the 2 videos which, due to technical problems, were unable to played at the launch;