Whenever I am in a course or retreat with my Yoga teacher, Prasad, he reminds us to use the time we spend at the retreat to reflect about what we are learning, but avoid trying to solve our lives during that time. I have always interpreted this as an invitation to reflection and a warning against over-thinking.
Throughout the years I have been studying with Prasad, I have gradually learned to mentally put my life on hold for some days whenever I am at one of his courses or taking a silence retreat on my own. Surprisingly enough, I manage quite well to stop worrying about the things I usually worry, I don’t make any plans, I avoid ruminating about past events. The only times my everyday life pops up in my mind is through reflection on how I can apply what I learn in the course or retreat to my life to have a positive change.
Because of the pandemic, I haven’t been able to meet my teacher in person for over two years now, and the possibility to take silent retreats has also been limited during this time. I try as much as I can to create space for myself to slow down and reflect in everyday life, but my mind is used to going at a certain pace when I’m at home. It is more difficult to ‘tame’ it here. This means that during the last six months, I have been feeling the need to take a break. It is not a break from anyone or anything else than my own mind, and I have been going around believing that I can only do it if I get out of the daily routine, preferably on my own.
Yesterday, I took our daughter to a meeting with the Norwegian Labor and Welfare Administration (NAV). My husband and I had decided to apply for an assistant that can be with her a few hours a week and take her to one of her after school activities or maybe that can support her if she wants to start going out with people her age. People with PWS usually have such assistants. Some of them start at a young age to release the load from parents, but we had never really felt we needed it. However, our daughter is a teenager now, and we considered it important to start now because she will most probably need an assistant as an adult too.
Right before the meeting, I noticed our daughter getting into a bad mood, and when I asked what was going on, she managed to express her discontent with our plan of getting her an assistant. Once at the NAV office, she was clearly frustrated, and was answering the person who wanted to meet her in short phrases without even looking at her. I tried as much as I could to stay quiet and let them talk since the purpose of the meeting was for my daughter to talk about herself, but as the meeting went on and she clearly expressed she didn’t want to have an assistant, I felt I had to chip in and explain that this was meant as a measure to give her more freedom. But it didn’t help.
Our daughter can be considered as high functioning despite her PWS diagnosis , and this can be a big burden for her because she is aware of her struggles and knows that she’s different. At this age, she’s struggling to accept that she has different needs than her peers, and she has – like many teenagers, I would argue – a slightly distorted idea of what she can achieve independently. Because of her condition, we cannot trust that she won’t seek food when she’s not with someone who knows her. She can also get stuck in situations when something unforeseen happens or when she misunderstands a person or a situation. She can also be quite passive. If no one suggests her something to do, she can sit for a long period of time doing nothing. Especially this last aspect of her condition is what affects me the most as a mum because whenever I prioritise to do something else than to get her engaged in some sort of activity, I feel I am letting her down. Also for all these reasons, we would like her to have an assistant. Unfortunately for her, she cannot see this, and it is difficult to talk about it without making her feel bad.
So, during the meeting, I sat, most of the time, feeling tired, helpless and frustrated because I know that if she refuses to have an assistant, she won’t get it. I felt incapable of dealing with the situation other than stay calm, be quiet and let the person from NAV talk. She decided to finish the meeting saying that if my daughter doesn’t want an assistant, she cannot be forced to have one.
Many thoughts were flying in my head, and I was mainly wondering if it is right to allow a person with special needs to decide something that most probably won’t benefit her. Especially when she’s only 13 years old. But at some point, I told myself what I tell myself with my other two children, she’s an individual and she will have to live her own life. Yes, she’s only 13, and certain things we can still decide for her like her diet, when she goes to bed, how much time she spends on her screens, etc, but certain things she just has to decide herself and live with it. I also realised that maybe she’s happy not doing anything from time to time. Maybe the only one having a problem with that is me.
For the last five minutes or so of the meeting, I told myself ‘allow’. I sat and heard my daughter talk with the woman from NAV, and didn’t intervene, didn’t resist, avoided having an opinion. I had a similar feeling than when at one of my retreats with Prasad. I gave my mind a break. I stopped the movie of the possible future catastrophes that could happen if my daughter doesn’t have an assistant, I stopped the self-pity of how tired I sometimes am of being a mum of a special needs teen, I just simply stopped, listened, observed and accepted.
Ever since that experience, I have been reflecting about how much I feel is my responsibility everywhere. I think that I am responsible for bringing up my kids according to our values, but I am not always responsible of their happiness and enjoyment. As they grow older, I am less responsible of what they choose to eat outside our home, what they think, what they do and do not do. I am not responsible for their choices. I am not responsible for their social interactions. I observe that as they grow older and contest more and more my views, resist my advice, choose to disobey our rules, I grow more and more worried.
I have to stop. My mind needs to stop. I need to allow more. If my youngest doesn’t like that we are concerned about the effect consumerism has on the environment and gets angry because I don’t want to buy her new clothes when she has a closet full, it is okay. She can be frustrated and show it, and I don’t need to do anything about it. If our son chooses to play on the computer instead of doing his homework even though we keep reminding him to do so, it is his choice and he will have to deal with the consequences. Even our daughter with special needs will have to make her own choices and we will have to allow for her to learn from them.
With this in mind, I decided that for the remaining of the Fall break, I will get into ‘retreat’ mood. I am going to give my mind a break. I am with my three kids this week while my husband has to work. We will enjoy. I will try to share my time between doing what they want to do and what I want to do, and give my mind a break. Whenever I start worrying, I will tell myself ‘allow’.
How many choices have I made in my life that weren’t optima?, and still, here I am. I don’t think I would be happier today if I had chosen differently back then. My life might have been different, but not happier. The most important is to have someone who can support you in the ups and downs in life. Someone who can help you reflect when you need it.