I read a blog that I follow yesterday ,that is written by the mother of an autistic young girl and she wrote about ‘keeping it real’ yesterday. Normally she has a positive outlook on her life and her daughter, as I try to do, but she shared her fears yesterday and the negatives of their family life as a result of autism, which got me thinking too. I try to be honest in my writing, to share events and reflections as I see them but usually, due to both my optimistic outlook and through fierce loyalty to Joshua, I will focus more on the positives in a day, and gloss over the negatives. For the sake of balance, I want to highlight some of the negatives from our recent family holiday too.
Joshua’s abilities and preferences dominate what we can do on holiday: the fact that he wants to be tucked up in bed around 9 pm, would curtail any nights out. We watched live music one night but we left after the first band finished playing, even though there was another coming on next, as Joshua could not tolerate any more. On our last night, I had planned that we would take a final walk down to the pier amusements and grab a drink while we were there, but seizure activity put a stop to that plan. Most evenings we were both at home watching television : my husband went to the local sauna a few times, while I bathed Joshua and got him to bed. Many people will think that is simply what parents do ,but usually by the time your son is 18, they are independent and so you can re-gain some of your social life as a couple. It is not that we want to be out partying all of the time, but to have the option, once in a while, would be nice. But that is what our respite weekends are partly for and I am already looking at a short break next month, just us two, when we will have more freedom to please ourselves.
As a couple we often operate like a solo relay race: I relished my cliff walks early every morning while Joshua was still asleep as some special time to myself. But once he is awake, if we needed something from the shops, it was usually simpler for one of us to go alone , while the other took care of Joshua, than having a family outing to the supermarket. We made two visits to the launderette during our holiday and we were like a tag team : I put the dirty washing in the machines, then came home, then my husband would remove the clean, wet washing and place it in a drier and come home. Finally I would collect the dry clothes. It was a precision -timed, military maneouvre!
I have arrived home with bruises that Joshua has inflicted on me: I have a dark bruise on my upper arm from when he reached through to me in the front seat of the car and pinched my skin really hard. My shins are sore from the kicks that they have endured. Joshua is getting stronger and bigger, so what might feel like playful taps to him, are hurting me. I am not sure why I am the target, as he does not pinch or kick his Dad. I know that he loves me, as I receive many more hugs than I do kicks, but I do worry about how that behaviour could escalate as he gets bigger and stronger, while I get older and weaker. There were a few occasions when he kicked strangers too and of course that upsets me more than when he targets me. I tend to excuse him, claiming it is not aggressive, but it is definitely targeted and deliberate, and if it is his game, it is not one that I want to encourage and I need to seek advice on how to dissuade him.
So that is enough about the downsides of holidaying with Joshua as he is, it was a great family holiday, with many more positives than negatives, and there are no two men that I would rather have gone away with.