Each day, I question what understanding Joseph does or does not have. Sometimes I think he struggles to comprehend a basic question or instruction, for example yesterday when I asked him about his lunchtime. His class has been facilitating sporting activities each day and I asked him what sports he had done. His response was, “Fish fingers and chips”. Then there are times that without me asking or directing him in some way, he seems to have the most amazing grasp on what is going on. I was recently collecting some travel money, something I didn’t discuss with Joseph and hadn’t done with him before and we were stood in the queue and he asked, “are we going on holiday?” Whether it was some symbols he saw or has more knowledge than I give him credit for, I simply don’t know but I was impressed.
And that’s how it goes. I flit between emotions of frustration and immense pride, which is exhausting to say the least.
When Joseph was a lot younger, his understanding was far less than it is now and he didn’t respond to much praise or punishment and if he was doing something he shouldn’t be, it wouldn’t make any difference if I tried to discipline him. It is a little easier now to use the threat of no iPad, if he is playing up in some way. That’s of course if I can physically remove the iPad from his clutches.
A recent shopping trip reminded me of how difficult it used to be taking Joseph to the supermarket. As soon as we arrived he asked “Shall we buy a toy?” I told him not at the moment but if he was a good boy and helped me I would consider it. We snaked around each aisle and Joseph appeared to be acting out different scenes of episodes of Something Special with him playing the part of Justin/Mr Tumble. Unfortunately that meant I had a load of items in the trolley I didn’t need. I considered whether it was easier to just buy them (made even more difficult by the fact he was also scanning and holding onto the scanner for dear life!) or tell him we didn’t need the strange collection of items we had acquired. I opted for the latter and told him that he was shopping very nicely but we didn’t need these items today. Surprisingly, on this occasion he seemed happy to return them to their rightful places. Shopping trips have always been rushed as I know he gets bored very quickly and I am mindful of this and try to get in and get out (often forgetting things I need in the process) as quick as I can. Not surprisingly, he hadn’t forgotten that I was yet to consider the toy he had asked for 20 minutes previously. I don’t make a point of purchasing something for Joseph every time we go to the supermarket as I don’t want it to be an expectation, but I do ensure that he knows how pleased I am with him and why. Possibly over the top but doesn’t hurt to let him know what pleases me and what tips me over the edge.
And despite me talking about Joseph’s understanding, it would be an oversight to not discuss other people’s understanding of autism and him. We went for a meal with our friends yesterday and Joseph had a particularly restless time where nothing was going to keep him sat still. He was going over and over and over various programmes he had seen and signing along to it. He was talking about going to the florist and the hairdresser and the couple at the side of us seemed particularly amused at his display. I wasn’t sure whether they were laughing along with him or at him. Emotionally, I’m in bits and never sure whether I should be standing up and making a public statement along the lines of “My son is autistic, what are you looking at?” or if I am feeling less polite “Who the fuck do you think you are smirking at?” It is possible though that they are endeared by Joseph and his happy display, they have been watching episodes of The A Word and are understanding of what is happening and on that basis I chose to ignore it. Don’t get me wrong, if it wasn’t so hard to call, I would have no hesitation about protecting my son. As Joseph is oblivious to any of this, I question as to whether I am trying to protect him or myself and have come to the conclusion that is most likely, me.
Nicely lead to my favourite (or not) topic. The A Word. Yes, I watched the last episode and yes I am glad it’s all over. I was waiting for a happier ending where someone discovered a cure for autism, but as it is based on reality, knew that was never going to happen. I am pleased that a drama was made around autism and hope that it has enlightened more people of some of the traits that someone with autism may have and also the struggles the family have whilst all this is going on around them.
It was interesting how the parent of the child with Down’s Syndrome chastised Joe’s mum and asked whether “all of the village idiots should stick together?” I have friends for no other reason that I share similar beliefs, personalities. I have friends who have children with disabilities, but that is not the reason why we are friends and I would be mortified if people felt that I should only have friends with neurotypical children.
Despite what we like to convince ourselves, none of us are built to the perfect prototype. Each and every one of us is unique. I like to think that Joseph doesn’t have a disability but he has different abilities. My friend Pauline once posed the question “What if Joseph isn’t actually the one who is different and it’s actually us?” Who defines what is normal and what isn’t? Maybe if we allowed ourselves to open our minds (and hearts), the world would be a much more accepting place.
We have our building and we have utilised what resources have been available to us. I believe it has character and dignity. I’m not quite sure it’s a Gaudi but it can’t be a million miles off.