Having a child with special needs changes your outlook totally, in my experience, nothing is ever the same again. Our experience of life is simply different from ‘mainstream families’, perhaps a more exaggerrated version? All parents worry about their children, of course they do, but the types of worries are different : I do not worry about Joshua making friends particularly, what career choices he might make or his academic school record. Last week Joshua was given a certificate of achievement and it was for following his peers to the next activity without prompting! That would be taken for granted for a normal young child, but it was something to be celebrated for us. We learn to enjoy our victories whenever they arise and try to allow them to compensate for some of the tougher times, so as to sustain us.
I am on ‘red alert’ almost all of the time: even if my eyes are not on Joshua, which they mostly are, then my ears are pricked for unusual noises from upstairs It is hard to distinguish the noise of a 9 stone teenager falling to the floor in a seizure from the more rhythmic sound of that same teenager emptying his bookshelf in his bedroom onto the floor until you have heard both sounds several times as I have now learnt to recognise both and to ignore one. Even when Joshua is not with us, when he is in respite or at school, my mobile phone is always close by and I am always ready for that call. Joshua is at his respite provision this weekend and sadly, due to the 999 call and hospital admission last stay, it has dinted my confidence and now I am half -expecting it again. We will need some incident-free weekends for that nervous feeling to disappear.
I enjoyed another episode of “There she Goes” yesterday and their family birthday meal out with autistic Rosie, was so familiar to me and made me laugh out loud. So simple family traditions, such as a birthday, are not the same when you have a child with special needs, as it became about her even though it was her older brother’s birthday party. They had to move tables as she was too disruptive and they even brought dough balls from another restaaurant to keep her quiet. The waitress was clearly nonplussed as to how to handle this dysfunctional family. We have had numerous family meals when we have taken turns at walking Joshua around outside or taken him to wash his hands to distract him or to calm him down. Thankfully these days he is better than he once was and he enjoys eating out and I usally take the trusty ipad along with me too, as back up. But the prospect of a long lesiurely family meal in a restaurant is often a daunting prospect even now.
There are so many ways in which I, or my life, has changed since Joshua came on the scene and the impact is permanent I would say. I can’t go back to yesterday, because I was a different person then. I should also say that not all of the changes are negative ones : I am much more aware and tolerant of differences than I once was and I certainly do not fret about things that really do not matter anymore, like having a tidy house – what is the point when I pick up the cushions that Joshua has thrown on the floor a thousand times a day. I recognise and even seek out, kind people and I no longer waste my time on those who are not good for my mental health. I have made so many new friends as a result of having Joshua, who help me daily to get through, and I am very grateful for that and for them.
When people told me that having a baby would change my life, even they did not realise by quite how much I am sure.