When J was young, we suspected that the day would come when he would say “I can’t do that because I am blind.”
We knew, as his parents, we could encourage him, we could tell him that anything was possible but we also knew he was very bright and would realise we were his parents and we had sight so our understanding may be limited and our comments may be biased.
So, when he was six months old, I started to research adults who had a visual impairment but had still been successful in their chosen field. There are quite a few to choose from. It also had to be someone I could make contact with.
Stevie Wonder. Stevie has Retinopathy of Prematurity like J, but to be successful in his field, he also had to be gifted with an amazing voice. Now, as J’s mum, I think J has a great voice but I may be biased. J does say he wants to be in a band called The Flowers when he leaves school so watch this space.
I wrote to David Blunkett MP and asked him if he would write to J explaining that anything was possible, it may just be more of a challenge.
Amazingly, we received a response within a week. A letter to J in braille, a letter to us in print and a copy of David’s autobiography which he hoped would give us some insight into the challenges he faced.
David offered us the opportunity to stay in touch and contact him should we need to do so.
Eight years later, the day arrived. J told us that he wanted to go to Grammar school (we still have Grammar schools here in Kent). J started his conversation with “I know this will be a no no because I’m blind but….” My heart stopped. We knew this day would come but I had not expected it to be around an educational provision. Of course, me being me, I immediately thought “oh yes you can sunshine and we will use the Law to ensure you get a fair chance” but I also thought he needed some other reassurance so I contacted David’s office and asked if we could take him up on his offer of chatting with J.
Again, we received a response within two days offering us the chance to pop up to London and meet him.
The big day arrives.
The day before his 9th birthday, we headed off. J loves trains and he loves meeting new people so it was a great day for him. We headed into Victoria so we could spend a few hours “mooching” as J calls it. He entertained the other passengers with his accents and imitations. He does a great Northern accent, an amusing London accent, a lovely Spanish accent counting to ten and then when asked for an Italian accent, he just says “lasagne, bolognese” so perhaps we need to work on that.
The day was the windiest Tuesday possible, with lots of weather warnings being issued. On arrival, we laughed so much walking against the wind with J holding onto me to avoid falling but we decided to take cover from the wind and rain when his cane had almost been snatched out of his hand once or twice.
We walked down to the Houses of Parliament after a long leisurely lunch. J loves having lunch with just one of his parents. He loves to chat and ask questions which can be difficult when his siblings are there and one of them would rather be at home on his iPad.
As we walked past Westminster Abbey, we were moved to the other side of the road and as we had time to kill, we decided to see what was happening. It was worth the wait as The Queen, William and Kate were arriving and J loved the atmosphere of the tourists cheering and excitedly chatting.
We sauntered down to David’s offices, and amusingly David Laws was desperately trying to get past us on the pavement but was struggling due to J’s cane (he still swings it quite wide when he is rushing). After some of the suggestions coming from Mr Law’s office with regard to testing and scoring children; all showing a total lack of understanding of children, parents and SEN, it was so tempting to encourage J to swing his cane that little bit wider but, of course, I was a grown up and refrained. I hope Mr Laws appreciates my restraint and learns from it.
On arrival, we were shown into a waiting room and for some reason, I decided it would be ok for J to eat a Twirl. We had chocolate everywhere, it was over his hands, clothes, t-shirt and I went from super-relaxed because we had arrived early to super-manic because I was trying to wipe him down with one tissue!
However, thankfully his staff put us at ease immediately and J was very happy to go into a lift (lifts and trains on the same day – J was in heaven).
When we were invited into David’s office, we were introduced to David and his enormous guide dog, Cosby. David asked J how old he was, and J being J, he replied “well today I am 8 but if you ask me tomorrow I will be 9” and David very kindly gave him some cash for his birthday the next day to buy sweets.
J shared some of his experiences, the things people had said and David told him that the solution was to “get tough”, learn resilience and “stay tough”.
David explained some of the challenges he had faced and also some of the negative comments he had had to address. As a child, he heard a mother move her child away from him in case they caught his blindness. He told us how he had to work harder than most to read articles and keep informed. He told J that if he wanted to go to Grammar school, he would have to work harder than his peers to get there and that it was something he could only do if he was prepared to work hard.
David then sat at his Perkins brailler and typed J a message. J was very impressed at how fast he could type, J told me later that he thought he would have a much more modern brailler and was impressed that he could type that fast on such an old machine. My boy is an iPad fiend and when we mentioned this, David and his PA suggested that J could teach David a few things about it.
David’s PA was lovely and offered to show J her typewriter/printer as J wanted to know if she was also blind. We popped into her office on our way out and after J had managed to press a button to send paper whizzing through the embosser, we left with another note from David’s office wishing him a happy birthday.
J really enjoyed the visit and on the way home, he happily chatted to people on the train about it. When he had finished regaling anyone who would listen, we still had over an hour to sit on the train so J then proceeded to win over the middle aged men on the train by listing all of the Beatles and Pink Floyd’s albums and songs, the year they were produced and which songs by Pink Floyd Sid appeared on. I am not sure that some of the carriage were as keen as others but J had a good time.
It was a lovely day. David was a great role model for J, he showed real understanding of the issues J faces but was also realistic about the challenges ahead. As a mum, it was reassuring to hear him talk about the demands he has faced and how he has resolved them.
David giving up the time to meet with us was hugely appreciated and I think really beneficial. J has spent the last week saying “I think I want to be an MP” followed by “Look at me mum, I’m getting tough.” Watch this space
One Page Profiles:
I love that my son is an individual, that although he may have the same label as many children, he is J first and then his label comes later.
We’re big fans of One Page Profiles in our family. They really help to ensure that the child is at the centre and not their label. If you have never used them or have heard about them but don’t know how to start one, we’re running a Campaign to get families using One Page Profiles in 2015 over at Bringing Us Together.