Creating workable boundaries

Heléna Karnström, a disabled parent, is founding member and former Chair of the Stockholm Co-operative for Independent Living, Sweden. This article is based on a presentation given by Heléna at a seminar, Positive Parenting: Lessons from Northern Europe, held in the UK earlier this year by the Social Care Institute for Excellence.

I was born in 1963 in a small town in Sweden. A year later I was diagnosed with spinal muscular atrophy, which means my muscle power is very weak. When I was nine I started using a powered wheelchair and at 15 I left home to stay in a student hostel.

In 1984 I helped to set up the Stockholm Co-operative for Independent Living (STIL), which is owned and run by people who need personal assistance. I quickly became involved in STIL’s work and was elected to the board. When I was granted 24 hours a day personal assistance myself it opened up lots of possibilities in my life. Through personal assistance I could both travel and work within the travel industry, which had been a long-standing dream. I worked in a travel agency for about three years before I became pregnant with my first child. In 1991 Jonathan was born and our second child, Johanna, followed in 1992.

Complicated situations

To be a parent and be dependent on personal care means that you sometimes find yourself in complicated situations where you have to think for more than one person. I worried a lot at first. Would my children still see me as their mother? Obviously I was clear with my personal assistants (PAs) how I wanted them to behave with my children. Now that I had a child I wanted things done my way and I had to be firm. For example, if a child wants to be picked up he always puts his arms out in front; it is then very difficult to detach him and pass him onto someone else. I always got my PAs to pick my children up from behind and pass them to me so their arms were stretched out to me, not to the PA.

Setting boundaries

When Johanna was born Jonathan was just 13 months old. He could climb up to me but it was complicated to have two children so close in age. I used my voice a lot to communicate what I wanted the children to do. When my husband, Mats, used his voice it didn’t have the same effect! Mats had to take them away from what they were doing but it was enough for me to say: “No, don’t do that”. I was confident that I could control my children. Once, when Jonathan was just a toddler, I had to wait alone with him on the ground floor of our block of flats near a steep set of steps leading to a cellar while my husband went up in the lift with the shopping. I persuaded Jonathan to climb onto my lap. Although he was furious that he couldn’t move around as he wanted to, he seemed to understand that I was asking him to stay with me for his own safety – not because I was trying to spoil his enjoyment.

I had to draw a limit before I got angry, not afterwards. I learned to anticipate what might happen and so was able to stop situations that could have made me angry. My husband wasn’t so aware of these things. I tried to prepare my PA for events that might happen and told her how I wanted her to react if they did occur. My PAs were never allowed to do things on my behalf: for example, it was my role to tell the children to say ‘hello’, ‘thank you’ etc. It wasn’t that I, or my children, treated my PAs badly – I just didn’t want to parent collectively. This was very important and I was consistent about it. Sometimes I decided that the best course of action was to take Jonathan and Johanna away from a situation that was causing problems, such as temper tantrums in a store. Other times I decided that if a tantrum started then I would think: ‘OK you can go on screaming’. My PA and I would look at each other but I didn’t feel stressed.

Learning from the children

Whatever I decided, it was important for me to be in control and I’ve been very firm in many situations. It’s a question of managing situations and doing the best for both the children and me as a parent. You don’t feel good if you lose your temper – and hitting children is not a good feeling. Even though I can’t lift a finger I could still humiliate my children verbally. In Sweden, verbal and psychological abuse are against the law, as is physical abuse. I’ve learned a lot from my children – one thing is to ask for forgiveness and to say sorry if I’ve behaved badly and tell them that I’ll try not to do it again.

You have to draw limits and teach what is right and wrong. When Jonathan was four or five he went to play with a neighbour’s son. Both boys had poured sand into the engine of the neighbour’s motorbike – this is not very good! I told Jonathan: “If you do things like this you hurt other people and could damage the motorbike – go back and say sorry and ask if you can clean it”. I felt devastated at what he had done and told him he had to go and apologise, but he refused. I told him I would have to ask my PA to carry him back – did he want that? So he came with me to say sorry. I asked him how he felt. He said he felt it was right to have apologised and the situation was then finished.

I never used baby language with my children. It’s important not to minimise children because they are smaller. I know what it feels like. I have been minimised myself. I’d rather swear or say something stupid.

Once my son came to me with tears in his eyes. These things always happen late at night when you need to go to bed. Finally he said he found it hard to talk to his dad and me about things we did not want to hear (when criticising us as parents). He said: “You get so angry so it makes it difficult for me to talk to you”. It’s easy to forget that we are making decisions for the children and that they don’t have the same outlook on the situation. It felt hard to be criticised but I tried to listen to what he said. We cried together and everything felt better afterwards.

When my children started to talk about my disability they were sad about things I wouldn’t be able to do with them. I could have said: “Oh you shouldn’t be sorry” but I didn’t, as I felt it was important to let them tell me how they felt. I didn’t feel criticised – they weren’t trying to say I wasn’t good enough.

I’ve also learned a considerable amount about myself; most of all, I am a living example that you don’t have to physically reprimand your children to draw limits.

First published in Disability, Pregnancy & Parenthood international, Issue 46, Spring 2004.

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