Part 7 - Access to Further Education

Henry with his Granny (my Mum) and 
Uncle Rupert at my wedding

Mark and I got married in 2003.  We married while Henry could still walk me down the aisle. I gave birth to another baby in 2004. A little girl called Saskia. We had genetic counselling and Saskia was a 9lb healthy baby.  I just needed her to start walking before Henry stopped walking. Saskia was a year old when she walked. Henry was twelve years old and he was still on his feet. She is a huge asset to our family, a ray of sunshine, the jewel in my crown. The most beautiful, loving, big hearted and caring soul in the whole world! She continues to be my biggest supporter and I am so grateful to have her in my life; a best friend and why I am still here today, my reason for living.

Me with Saskia - My Angel

When Henry was thirteen, he had an accident. We moved into a bungalow in 2004 and lived through dusty building work and endless renovations to make it accessible for Henry. I remember, it was a Tuesday evening at six o’clock. I heard a crash in the kitchen and Henry cry out. He had walked up the two steps between the conservatory and kitchen, lost his balance, and put his hand through the glass in the old kitchen door. We did not know that the glass was not toughened. The glass sliced through and severed the main artery in his wrist. I walked into the kitchen and there was blood everywhere, on the floor, up the walls and over the ceiling. I rang 999. I used a tea towel as a torniquet and waited for the paramedics. They took twelve minutes to arrive and that was the longest twelve minutes of my life. Henry had forty stitches in his wrist by the Plastic Surgeons. He managed to get full use off that hand back which was testament to his relentless exercises he had to do. But they strapped his arm across his chest while his wounds healed and that was the end of Henry being able to walk independently. He was no longer able to use his arm to steady himself and sadly he finally lost his mobility. He finally lost the ability to walk.

Henry attended the EACH hospice at this time. He would go for respite a few times a year. At this point, I did not need respite from Henry, but it was good for him to go. It was an amazing resource. They took the children out on day trips, entertained them with music therapy, art therapy and hydrotherapy. It helped Henry to be around children who lived in his world. There were quite a few teenage boys in wheelchairs and Henry attended until he was eighteen years old. We also got involved as a family. Edward and Saskia attended sibling groups and we were invited on many outings. We were invited to the Dream Nights at Colchester Zoo where The Zoo would shut its doors to the public. The staff all dressed up as animals and entertained the children. I found these trips bittersweet. Such amazing experiences. Sadly, making memories while we could.

Chilling in the pool!

Henry was an A Grade student at school. He was an intelligent boy with many interests and hobbies. Just like the gym, his interests became obsessions, and he showed a lot of OCD tendencies. If he was interested in something, he would research it inside out and talk about it until we all went crazy! He was interested in rocks and minerals, Greek Myths and Legends, Birds of Prey, Warhammer. He spent hours building Warhammer figures and playing with his armies on his Warhammer board. He worked hard at school. He never used his disability as an excuse to stay at home and if he ever did complain I used to tell him that he could lie in bed and feel sorry for himself, or he could get up and live his life, because it was the only life he was going to get and he still had the opportunity. I was desperate for him to wring out every drop of life from every day, and he did.

Henry achieved thirteen GCSE’s including Latin and Statistics, and I could have burst with pride. Henry’s school did not have a sixth form. We looked at the sixth form schools in the surrounding area and he decided to apply to Hills Road Sixth Form College. Hills Road is considered one of the best, if not the best, state sixth form in the Country, only accepting the top 25% of students. Henry applied, went for his interview, and was offered a place. The A level subjects he chose were Chemistry, Biology, Philosophy and Classical Civilisation. I started enquiring about transport because the school was 24 miles away and it would have been impossible for Henry to catch the bus.

Henry eats like a horse!

I rang the Council and spoke to a Secretary in the Transport Department. I explained that Henry was leaving secondary school and going onto Sixth Form College. I could hear her tapping away on her keyboard as she told me that she would send out the application for transport to Bishop Laney Sixth Form College, in Ely. I told her that Henry had been accepted at Hills Road and she said that, no, he would have to go to Ely Sixth Form College because it was the nearest school within the catchment area. I explained that Henry had applied to Hills Road, won his place and that was his school of choice. I even explained that Ely Sixth Form did not teach Classical Civilisation, a subject of his choice. But she was adamant. Before I put the phone down, I told her to jot my name down and remember it. I told her my name would be coming back across her desk and Henry would be going to Hills Road. This was my first experience of the difficulties of disability and inclusion. I spent the next few weeks ringing anyone I could think of who might be able to help me with the transport problem. Everyone I spoke to would give me another name, another number, and so it went on. I felt like I was going round in circles.

Around this time, Edward, who was also at Secondary School, broke his hip. I was called by the school to say that they had found him lying on the school field unable to move. I raced over there to find an ambulance waiting to take him to hospital. I followed the ambulance to the hospital. I left late that night when Edward was settled. I got home in the dark, exhausted, but full of adrenaline, unable to sleep. I turned on my computer and composed a two-page letter to a lady in Transport that I had been told to contact. I woke up at 6am the following morning and turned on my computer. There was her reply; Henry would be going to Hills Road, and they would provide and fund the transport. As I gave Henry the good news, I spared a thought for the secretary in the transport office and wondered if she had heard the news! Another battle won!

The transition for Henry between Secondary School and Sixth Form College was seamless. The Sen Co at the Secondary School was so brilliant and professional, and smoothed the path for Henry’s next chapter.