Hear Hear

I wrote yesterday about Joshua’s eyesight, so I thought that I would  look at another of his senses today, as at his initial diagnosis at 4 days old, we were told that he might not see, hear, talk or walk. There is nothing wrong with Joshua’s hearing as far as I am concerned and formal tests when he was two confirmed that, so his brain can pass messages from his ears better than from his eyes. In fact, due to his deep love of music, Joshua’s hearing is very precious to him.

Even from being a baby, if he was crying, to dance with him in the lounge, with music blasting out, would sooth him instantly. As a toddler, he was fascinated by speakers – he would always seek them out in a cafe or when out in public, and want to get as close to them as possible. It was as though he felt music, it sends a vibration through him and makes him happy. He was in trouble as a toddler, as he put some chunky chalk inside his dad’s precious speakers, which did not, he explained, enhance the sound!

Joshua first watched the live 8 show in 2005 – 20 years after the original Live Aid concert – and Joshua has watched ‘The Show’ almost everyday since then! Luckily it is a 4 disc DVD, but he has his favourite performers and  it is usually ‘Robbie’ and ‘Travis’ that he asks for and who make him grin and wriggle most.  In fact in the last 14 years, we have worn out several copies of The Show. When he was younger he used to dance endlessly to ‘The Rising’ By Bruce Springsteen and ‘Hanging on the Telephone’ by Blondie, skipping round and round in circles with those tracks on repeat.

Joshua has enjoyed many live music performances in his life , from Bruce Springsteen several times, to Status Quo and ELO .He has enjoyed those gigs as well as musical theatre including Joseph, Matilda, Lion King, We will Rock You ,The Snowman and Club Tropicana most recently. So we have indulged his love of music, but as with films, it is hard to get him off his favourite DVDs. That being said, he loves a busker, and will watch them for ages when out shopping, particularly if they have a guitar, and he enjoys a brass band performance too.  In mainstream nursery school, he had a repertoire of Burt Bacharach songs that he would sing in the mirror – Magic moments and Close to you, being my favourites. So his music taste is pretty eclectic and only having a good strong beat seems to be essential.

Joshua’s life would be much poorer without his love of music in it .  He may not be able to vocalise a response, but Joshua responds instantly when you call his name out. I am not aware if his right-side weakness has also impacted on his ears, but they both seem to be in perfect working order to me. That being said, he is not above ignoring instructions and pretending not to have heard me too, but I guess that is just human nature and his naughty sense of humour too, when I call him telling him that we are ready to go out, and he jumps up and runs upstairs to make me chase him! His ears are not to blame for that common response and lack of cooperation.

One thing that he has never done, which I would love him to use his hearing for, is to listen and talk to me on the telephone. He loves a telephone and will endlessly watch himself in the mirror pretending to be taking or making a call, he loves to hide them and he loves to press buttons on a real phone, and will not be fobbed off with a toy one or an old one. But when he is away in respite or if I am working away, it would be brilliant if he would talk to me, just once on the phone, but it has never happened. If he is passed the receiver and asked to say hello to someone, he will kiss the phone or possibly wave at it, but he will never talk or even listen for more than a second or two.

I am really grateful that Joshua has his sense of hearing and I feel that he really makes the most of it too.

Let them eat cake

For the last two years, I have been organising a monthly coffee morning at school for parents to get together and we had the last one of the academic year yesterday. I have to say that I enjoyed this one more than any other this year, as it was well attended but rather than breaking up into lots of small chats, we sat around the meeting room table and all talked as a group. There were never any awkward silences and nobody was ranting, but there was plenty of give and take in the conversation, with everyone contributing. It maybe takes two years for people to build up the confidence to speak up or come on their own, without the back up of friends or family, but I really felt as though we had developed something special yesterday.

I do not really have a sweet tooth, but I recognise how happy a slice of coffee cake or a piece of gingerbread makes people and I use it straegically too. I use cake to thank people that are important to me at school : I always treat the school nurses as Joshua is so relaint on them to keep him safe at school. I always save something for the two ladies on reception too and it never fails to plaease them. The lady who makes JOshua very happy with musical input said that my shortbread was the best she had ever tasted! I have started to make cheese straws too, as I love them and find them moreish and they also went down very well. The Head enjoyed two cheese straws then begged me to take the tin away!

For me, baking, then giving cake, is a process that I enjoy : I love to make people happy with such a simple thing, so I think I can certainly be described as a ‘feeder’. That is why, when Joshua was not eating at the end of last year, I found it so distressing – not just because I could see him getting skinnier before my eyes, but because providing food is clearly part of who I am, so when he rejected my cooking, it impacted on my perception of myself too. Often when someone is sad and I cannot solve their problem, I bake them a sweet treat, as an expression of how I care for them. While some spontaneous shortbread , chocolate brownies or flapjack do not solve their problems, they certainly help to make a bitter pill more palatable.

A Day out together

I am delighted to report that our dog, Jack, who was not expected to survive on Monday night, is still with us and if anything, is getting more mobile. We had discussed our plans for leaving him at home while we went out for lunch then coming back to check on him, but he had his own ideas. When I opened the car boot, he tried to jump in, he was adamant that he wanted to come too. So we made him comfortable and he got his way, talk about resilience, he even enjoyed a short walk after lunch too. He seems determined to make the most of what will be his final holiday.

We  headed into a town with a week long festival, where we browsed through the crowded streets enjoying the stalls and inpromptu music. We settled in a bar with an external stage, managing to get seats right at the front and we waited for the local band that all three of us enjoy listening to. When they began to sing, Joshua jigged in his wheelchair and waved his arm around in delight. But by their penultimate song, he could not hold back any more and he gestured to get out of his chair. Wild horses would not keep him away from the front of the  stage and the loud speakers, so we danced to their finale. The band know Joshua and have watched him grow over the years that we have followed them and so they do not seem to mind this groupie. In fact, my phone this morning has shown me a video of us both dancing to exactly the same song exactly three years ago today, with both of us looking younger. His evident enjoyment of the music, makes others smile and one lady , a stranger, came up to us while we were dancing and grabbed one of each of our hands and gave them a squeeze, but said nothing.

Joshua has always loved music, he feels it I am sure and so I am happy to let him express that enjoyment and to share it with others.