For those of you who have started reading my blogs you will be aware that my main focus is on my 13 daughter who has Asperger’s and therefore you may be forgiven for thinking that the title of my latest blog is about how people perceive her, it’s not, it’s about how they perceive me.Last week I was prompted by a series of events that made me sit down and really think about how my daughter’s diagnosis changed me.
The first situation was one where my youngest daughter age 8 was off to sing in a school choir, this meant a 5 hour round journey to go and watch her. Another parent, who has a daughter the same age and who also has a younger son who has autism, age 6, was trying to juggle her world so that she could attend the concert. She had a predicament that meant that the only two other people that her son felt comfortable staying with were not able to get to her house in time for her to make the drive up to the concert. I could sense the guilt that she felt as she told her daughter that she would try her best to get to there. For those parents who do not have an autistic child they would probably ask why she did not take the younger child with her. No way, not an option! 6000 children, plus parents, plus the drive, plus all the sensory issues meant that it was a no go zone. I got it, I understood immediately, so much so that I sent her a message afterwards to remind her not to be so tough on herself. Don’t get me wrong I’m not making myself out to be a super hero or Mrs Perfect, it has been a huge roller coaster in terms of learning for me, and I continue to learn on a daily basis. Since the start of the process of my daughter’s diagnosis my life has became all about autism, reading books about it, reading articles, watching TV Programme’s, going to talks, talking to her teachers etc. I threw myself into it because I was determined not to let her down. It’s trial and error. Now though I find myself in a situation whereby all the trial and error has changed me. So how did this mum perceive me? Does she feel that I am a know it all, someone who is rather cheeky to suggest that she should carry on through the tough times? I hope not. She quickly sent back a lovely message thanking me for my support. I hope that I made her realise that she’s not alone in these daily struggles.
Spontaneity, it’s a word I love, or rather I should say that I have a love- hate relationship with. I love it because I used to be spontaneous, I used to be a bit more free spirited but I have had to adapt. I sometimes feel resentful of the fact that I cannot be as spontaneous as I used to be. For example my daughter’s situation has meant that I could no longer go to the shops on a whim, she needed prior notice. Gosh in the beginning of our journey (I call it our journey because we work really hard together to find a life that works for us both) she needed to know exactly how many items I was buying in the shop and boy did I need help if I had said 10 things and then I picked up 11. I still cannot go on a journey without thinking about if she has had enough food, when she will next need to eat, if the shops on the journey or at the end destination will have the right types of food. The toilet breaks, the length of time in the car, her sleep pattern,the sensory issues the list is endless and so being spontaneous is out the window. However, as time has gone on, we are three years into her official diagnosis, a lot of the above has become normal practice for me, so much so that until I actually sat down and thought about it I was unaware of how much of the above I do on auto pilot. Friendships are hard, they require effort and time and I have struggled with both of these things in recent years because parents of Autism have very little support. This makes me wonder though how do my friends view me? Do they find my planning and organisation all rather frustrating? Are they totally fed up of asking me out to social events because they know that 50% of the time I will cancel? Are they fed up of hearing about Asperger’s? I hope not. I hope that they understand that as much as I possibly can I make time for them, that I love listening to their stories about their day to day lives because although I have changed I need them around me.
The second thing that happened was that my 16 year old daughter asked if my blogs will ever be about her or will it always be about her sister. I get it, it’s tough. Yes, you can read all the Instagram posts in the world that give you a sense of what it is like to be autistic but let’s face it unless you are you just do not get it! That is the hard truth. As family members you find yourself treading on egg shells not wanting to say the wrong thing to offend and yet my 13 year old will say, “well try walking in my shoes sometime”. For my beautiful 16 year old though she has her own daily life issues to deal with, she’s working hard at her A levels and yet I understand where she is coming from because she too has had to change. She has to keep quiet whilst face timing friends and due to our routines she does not have as much freedom as she would like. She probably doesn’t realise it yet but the experiences of her family mean that she is more tolerant and understanding of different types of people, that she can see the view point of others in a way that some of her peers have not yet developed how to do. I do not for one moment think that this is easy for her. I wonder how she views me. Does she feel that I am biased towards her other sister? Does she feel that I do not spend enough time with her? I hope not. I hope that she understands that I love her dearly and that my aim is to make life smoother for all of us as a family.
The third thing that happened was that I went out for coffee with some mum’s from school. Again this was not without a lot of prior planning on my part to ensure that my 13 year old would have someone watching her and that she had plenty of food in that she liked to keep her going until my return a couple of hours later. I really enjoyed being out and being able to talk about general day to day ‘rubbish’. It was fun and it is something that I plan to repeat, they are not close enough to understand my day to day life so I do not feel that they are judging me. I did however find it hard to shut off and found my brain wandering to think about things relating to my daughter, again this is an auto pilot situation. So I wonder did they view me as being a bit stupid? A bit disinterested in the conversation? I hope not, one my mum said it was one of the highlights of her week so I couldn’t have come across too crazy. I hope that they saw the positives in me.
The last thing that happened was that I learnt the very sad news that a lady that I worked with had passed away on the Wednesday and her husband had died the previous the Saturday. She had leukaemia and had refused treatment to extend her life to look after him. I found this very upsetting and it confirmed that for our family that we all make sacrifices and for some those sacrifices are really life changing.