When Tina asked me to write a blog about Joseph my immediate reaction was ‘NO’ (in a very loud, assertive and definitive voice) ‘that will never happen’. So in true Tina style of persuasion here is my version of ‘Joseph and his Amazing Chocolate Factory’. Read on and my reasons for the title will become clear!
Joseph’s entrance to the world on the 19th March 2008 started a rollercoaster of events for his family and friends. As you will have read from various early blogs he wasn’t an easy baby. I remember visiting Tina for the first time and looking at this beautiful little boy, who already had started to create his own agenda in the world. ‘I will not allow my parents any sleep’ was the top of the list. Which as everyone knows is still there right at the top.
I was overjoyed when asked to be Joseph’s Godmother, what an honour, but also what a commitment. Knowing Tina I knew that this wasn’t just going to be something on a piece of paper, but a lifetime commitment (which is exactly what it should be, but invariably people lose touch and the child never has anything to do with their Godparents years down the line). Of course I said yes.
Years down the line and many ups and downs for Tina & Joseph, it started to become apparent that his development was differing slightly. As with anything we all evaluate these times by looking back and realising before any diagnosis that things weren’t quite right. Tina is precious & fiercely loyal (I know who would guess that from her blogs!), so any thoughts around something not being right had to be carefully & sensitively approached. Now I’m not a brave person, so would pick times when Tina broached the subject to discuss and allow the words to be hers not someone else’s.
I hate labels for individuals in any instance as I believe we all have our quirks and idiosyncrasies, and I think Tina already quoted me on this but, I would love to know who decides what is normal? Maybe children with autism are the normal ones and it is us that should be label as different! Anyway thats a whole debate on it’s own.
The day came when after months of visits to various different places, Joseph was diagnosed with autism. If you have been lucky enough to never have someone close to you have this earth shattering news, maybe at this point I can try & describe how that feels… all the hopes and dreams you have for your son/daughter disappear in front of you, your mind goes like a flash through and expected life to…will he be able to go to mainstream school, will he have children, will he speak, will he be able to live on his own and so on. All jumbled together without any reasonable thought process.
Joseph is and always has been a calm and happy loving little boy. Music being his first real love, I have played the guitar (incorrectly of course & had to keep being told how to hold it as clearly I didn’t know), sat with cushions on my head (because that was the game Joseph was playing), danced, sang and had my hair styled (painfully) by this amazing little boy.
One of the loveliest memories I have of Joseph and probably set the scene for the love I have for him was at the opening of a regeneration project near where we live. My son & his wife had a delicatessen near the gardens of the project at the time, so as a family, me with my numerous grandchildren and Tina with Joseph decided to go and join in the fun. Lots of different activities happening and my grandchildren have always accepted Joseph as part of the family & another one of our flock.There was a stage on which were various musical instruments and music being played. Joseph stood at the front mesmerised, jigging (which at that time we always had to determine what type of jig, or a toilet incident might happen) and generally in his own wonderful world absorbed into the music. For me this was the first time I realised that music was going to be the way to get to Joseph and calm him down.
Over the years music has been such a part of his life, more recently when Tina and Joseph came to stay for a while I had to sit in the lounge with them, my daughter and two granddaughters singing along to Beyonce© Love on Top. We all had to join in, not just once but on repeat….Joseph with hairbrush in hand (microphone for those of you who didn’t know that a hairbrush could double up as that). The happiness oozed out of him, ‘Sing Aunty Pauline’ if I dared to stop and laugh or try to talk.
This was also during his hairdressing period and for some reason his mum decided to buy a WOODEN yes WOODEN hairdressing kit for him. He would place a chair at the bottom of my stairs (I felt a small Sweeney Todd may appear at this time) in front of the mirror and demand anyone passing to SIT in a rather menacing than inviting tone. A cape was placed very tightly around the neck and he would vaguely ask what you wanted, but you knew he wasn’t listening. At this point I will mention that he also watches YouTube clips and he loved watching hairdressing ones so your experience would depend on what had been replayed several times over the last few days. Clearly I was having my head shaved by a WOODEN razor. So together with the relevant noises for the implement being used, the procedure started. I say procedure as it cannot be explained as anything else. In a not too gentle manner he shaved my head, asking me to bend my head forward when he needed to do the back of my neck.
Joking aside, at this stage Joseph’s use of vocabulary had developed but had taken some time to get to, so during this torture …oops I mean haircut, the pleasure of him speaking to me and understanding what he wanted was so significant.
The other side of this is the complete pride for my own family who have embraced Tina and Joseph (together with her new extended family now) laughing with him, joining in and most of all protecting him as if he were part of their own family throughout his school time. My family I know, as they grow, will always embrace difference as we were taught to do & not look at it as strange.
The blog hasn’t gone chronologically as I wanted to write down my thoughts as they presented themselves. I haven’t touched on the sadness which comes along with a diagnosis, the tantrums when he couldn’t understand why something couldn’t happen. The strength which Tina has to dig, dig and keep on digging until she gets the result she feels Joseph deserves. The hours spent looking for classes he can join in, swimming, dancing, music lessons and the list goes on. The tears when things don’t work out, when Joseph joins classes which aren’t accommodating to his needs (even thought they say they are), just using the words and admitting to people who are looking at him ‘My son has autism’. Which I know still hurts to the core every time it occurs.
I have laughed so much with this little boy, through all the toilet training (hence my title for the blog), seen more and discussed more about his poo (turds to quote his Mum) than a Godmother needs to. His attitude to life is in my eyes one which should be adopted by everyone. Smile, sing and dance because nothing else really matters does it?
My final paragraph is to say that I class this family unit as an extension of my own. We are so privileged to have them join our family events and in return we get to see Joseph in concerts, getting awards for doing well at specific things in school and generally growing in knowledge and ability. When I think of Joseph, I think of happiness and laughter which in my mind is the only label he should have.