Distraction is the key

So in last week’s blog I wrote about the ongoing situation of lockdown and the impact that it is having on Bonnie. I briefly touched on the OCD issues but today I wanted to write more about this, in particular because I feel that my last blog painted a rosy version of some of the issues that Bonnie faces and yet I am fully aware that I should not be blase about some of these points, OCD in particular.

Bonnie has received therapy in the past to help her deal with her OCD issues ,you will also be familiar from previous blogs that the therapy did not go so well and caused Bonnie more issues than it solved, which means that she feels that if she does not do certain things in a certain routine then bad things will happen. At the moment the majority of us have daily, if not hourly, concerns worrying about our loved ones as the worrying levels of people losing their life due to COVID19 continue to happen around us out of our control. Now imagine if you felt that by following a certain act or routine that you could keep those loved ones safe, this is what Bonnie does. Currently the situation means that statistically something happening to one of her family members is an increased chance from normal so her OCD is higher than it previously has been.

The issues regarding the washing of clothes, as I mentioned last week is acceptable. It is quite right that at the moment we keep on top of our hygiene including the washing of hands and whilst on first appearances it would be perceived that Bonnie has a keep grip on her OCD I have noticed numerous changes within her schedule that make me aware of a deeper issue. Not only are clothes removed from her room but a number of items, books, makeup, shoes, things that are placed in the hall outside her door. I appreciate that it is a small price to pay for giving her some peace of mind, but eventually after a week or so more items seem to live in the hall rather than her room. Yesterday we took time to replace the items one by one in a neat order but I am left wondering how long it will be before they return to the hall.

One of the hardest ones for me to deal with is her issue of taking the toilet roll, at night, and throwing it down the side of the vanity cupboard in the bathroom. This can be rather frustrating if you get up in the middle of the night, and lets face it these days I always need to get up. The toilet roll is lodged down the side and the gap is rather tight, I am not very tall and the position of where it has fallen means that I sometimes have to risk hitting my head of the window sill or unit, or I can take the third option of drip drying …. eew a bump on the head it is.

Bonnie’s latest therapist, a private one, is brilliant and has recently tried to work through some of these issues with Bonnie. She is aware though, as are we, that the work involved in treating OCD is a long process and its hard work, very emotionally upsetting for Bonnie and tends to set her back for a while before you begin to see the improvement. We have collectedly decided therefore that it may have to be put on the back burner for now. For now Bonnie will continue to paint, read and train her dog and find time to distract herself from these worrying thoughts.

Distraction is something that most of us are currently doing; I have been gardening more now than I have ever been. It is important to find ways of making our lives seem good again and I have reduced the amount of time that I look at social media and the news, I find it all too much and it brings me back down to life with a bump. Put aside the financial worries and the issues of schooling our lives are what matter the most and I am very lucky not to have had loved ones taken by this horrendous virus. I am reminded that we should always choose our battles and I can therefore continue to live in my little distracted world and tackle the ivy growing on the walls, the war of fighting OCD is for another day.

I am me and you are you!

Sometimes you ponder and think and turn things around in your head that you just cannot explain in words. I have been doing that for sometime now, wondering how to write this blog and if it would make any sense. I’m still not sure that it does, but then again hopefully someone will understand what it is that I am trying to explain and the questions that I am asking.

For me, I sometimes let my brain think too much and then I get stuck on a thought process that literally just blows my brain. For example: Death, I just don’t get it. I understand it from a religious aspect, from a practical point of view but what I can’t complete in my thought process is just what happens to me? Where do my thoughts go? I’m someone who likes hard factual proof and with death we just don’t have that.

At the moment what I am searching for is the answer to “what is different about myself and my daughter Bonnie?”. I am aware that many autistic people do not like the labels of autism, normal, etc and this blog is not meant to cause offence to anyone in anyway and I appreciate that some of my terminology may seem insensitive but please stick with me and if possible provide as many comments as you can.

You see I had recently read the book The Colour of Bee Larkham’s Murder’ by Sarah J Harris. The book is about a fictional murder and how an autistic teenage boy, Jasper, is caught up in the situation. It talks about how he develops friendships, some of which could be viewed as inappropriate and how he expresses his emotions through his art work. The most interesting factor for me though was that he suffers from synesthesia, which means that when he hears sounds he sees them as colours, below is a link which describes the condition in a much more detailed way if you are interested  https://www.livescience.com/60707-what-is-synesthesia.html Jasper also has problems recognising faces and so when trying to piece together the events that lead to the death of Bee Larkham you can understand the complexities involved. https://www.harpercollins.co.uk/9780008256371/the-colour-of-bee-larkhams-murder/

Allow yourself to get into the mind of Jasper

This started me wondering what things that my daughter feels and understands as normal for her but that generally in society we would not have not considered. It’s a little bit like someone being born with something that causes them physical pain and that that pain stays with them for life, but because they do not know a life without the pain they do not know any other life. How many things does Bonnie have to deal with that we do not even know about and how much is she aware that the rest of us do not have those complexities to deal with.

Recently she said to me “Can you feel the moisture in the air?” So we had a discussion about the moisture in the air. It turns out that she can smell the change in temperature without even going outside. Now I wonder how many others also experience this sense and how it makes them feel. My Bonnie really struggles when it is cold and not a sunny day, we have lots of those where we live, and so is it an inbuilt sense to help her adjust ? For me I too could tell that the temperature had changed because when I went outside I used the senses of sight, I could see that the sun was going down and the sense of feeling because my body felt colder but I did not smell moisture in the air.

So how many more areas are there like this in her life that I fail to understand? How will I ever understand them because they are not even something that I have ever though about. For me the only way to do this is to talk, and then keep on talking. Initially when she would talk to me about how fatigued she became I would say, “well I’m tired too”, but then over time after talking about this I now understand that my tiredness is nothing in comparison to hers. I am aware from talking to other autistic people that some count the leaves on trees whilst taking a country walk. That some people deal with busy cities by imagining that the people around them are in fact trees, because this helps them cope with the sensory issues.

I am very much aware that Bonnie is Bonnie, in the same way that I am Kate and that we are all very different in life. I don’t want people to judge her for her autism, I want them to accept that she may not conform to what they judge as conventional but that if they spoke to her they would see the amazing abilities that she possesses. Her intelligence cannot be recorded in the same way that other children her age are tested because her understanding of the world is unconventional, not weird or odd or strange but just different. Maybe if we all stepped out of our boxes and took time to see what is around us then we may learn some of these different approaches to life and the world may be a better place.