ME, MYSELF, AND I......

Hi everyone my name is Henry Blythe Wright I was born on the 12th September 1994 at The Royal London Hospital right in the middle of the east End of London ( proper Cockney land).I was born at 9.04 on a Monday morning and weighed in at 9lb 4oz.Was all going well but at about 3 months stopped making noises, cognitive was fine , I understand what was going on my Mum informs mebut verbally express myself was not happening, could make facial expressions though. Was also making the right reactions too. Had a few problems with feeding couldn’t breast feed and formula milk was also a no-no , I would cry for hours and the tiniest amount would expel and I would be fine until the next feed where it would repeat so a very anxious few months, after speaking with a consultant was put on watered down Carnation condensed milk, very high sugar content ,but you will be pleased to hearthankfully I have all my own teeth still with no fillings lol .Fast forward 12-18 months and I had a very unsteady gait so Mum was taking me backwards and forwards to the Doctors, on one occasion was told by one GP that all children had a funny gait, also with no speech coming along either he decided to tell us that Einstein didn’t speak till he was 3,so Mum told him wasn’t interested in Einstein but Henry Wright. Eventually at the age of 2 at my dad and Nans insistence we got to see a speech therapist, after 15mins in her session she said that I had a co-ordination problem, finally we were getting somewhere, appointments made for various Paediatrics MRI scan etc, eventually after seeing Dr Harris was given the news that I had Ataxia Telangiectasia AT for short. He was hoping that it was mild Cerebral Palsy but heigh Ho it is what it is. I was at home with my family until it was time for reception at Main stream school (no nursery for me was wrapped in cotton wool lol). I was still walking but walked like a new born foal and a string puppet ,I was still able to join in lots of activities with help, but eventually I was falling a lot moreand at the age of 8 a had to be assessed for a wheelchair for my safety and the safety of others. At the age of 9 I was in the wheelchair pretty much all the time. When I left Primary School I attended another mainstream school , SENCO did their best in all depts to make sure I was included in 90 of the curriculum,the main problem was communication I had very bad drooling and slurring of my words and used to get very upset and stressed, I had one particular TA who couldn’t understand me and I couldn’t understand him, not the ideal situation to be in ,it came to a head when my Mum asked for another TA and we was then accusedby him of being a Racist as he was African, NO he had a strong accent and that was the problem, I had dysarthria and was fighting a losing battle, I need a TA who could understand me and Visa Versa. Eventually Mum got the problem sorted andhad a happy time until I left, I then attended college and did Business studies. I have since done an Apprenticeship for a year and I loved itwas dumbing down websites for people like my Mum who isn’t really Tech savvy ( she said its ok to put that lol ),sadly since then there has been nothing ,every time I apply for volunteer work or positions I get knocked back as I need 1 to 1 assistance. My brain is being wasted sadly. There are no groups where I live that cater for my age grp with interests that I like, I really don’t want to go to do flower arranging and card making as I wouldn’t have much luck, I think the Government needs to pump a lot more money into a forgotten grp as we have so much to offer, look beyond the person in the chair or not in the chair as disabilities come in all shapes and sizes ,delve a bit deeper and you may be surpised on what we have to offer.