Sharing and expressing feelings: supporting children of disabled parents

My children were born to a disabled mum, have adapted well to gradual changes in my mobility, and understand that I can't do all that their dad can. But a sudden, unexpected deterioration in my eyesight was a shock to us all. In hindsight, I didn't prepare them as well as I could have.

I had explained to my nine-year-old twins that I was having a cataract operation. Two weeks later, after I attended a school assembly wearing an eye patch, Anya told me that her friend was worried about me. Arjun said that a friend had asked why I was wearing a patch. Looking down at the table, Arjun told me, “I didn't know what to say so I just walked away.”

When other children at school had asked me why I wore a patch, I had explained that my eyes weren't working well together and one needed to rest while the other worked. I hadn't thought to share this with my children, or considered that they might feel awkward speaking to friends about my disability. So that evening we talked.

Medical complications, followed by many unexpected stressful hospital visits, further tests and poor information led to a deep blue mood. Some might call it depression. As the weeks turned into months and my fear and frustrations grew, I gave little attention to how my children might be feeling. Following a long chat with a good friend who is also a disabled mum, I noticed Anya's unhappiness and Arjun's increased need to please and repeated ‘sorry’ for the littlest thing. I wish I'd handled things differently, but my common sense to initiate conversations was lost in my fear, frustration and deep blue mood. As my silence grew, so did theirs. They stopped asking questions and didn't tell me about being teased. Some kind of reminder or suggestion that I keep them informed would have helped. In hindsight, the following reminders would have made the experience easier for all of us.

Acknowledge bad news

I wish I had told them more about how the operation had not gone according to plan. Children do realise something is wrong and their imagination may lead them to worse scenarios than the reality. Some people may think they are protecting children by not telling them bad news but this only increases stress. It's not unusual for young children to think that it's their fault. They need to be reassured and reminded that what has happened had nothing to do with them.

Be honest and acknowledge feelings

I was honest when my children asked me questions. It would have been more helpful if I'd initiated conversations and discussed how what was happening to me might affect them, or not. “You”ll still go on the school trip but I won't go this time.” It would have been helpful if I'd offered simple messages, repeated often over time until I was sure they understood. I wish I had spoken about feelings before my children highlighted problems through changes in behaviour. Anya became upset quickly over the littlest disruptions in her day. Arjun was hugging me and needing cuddles much more.

I'm aware that children respond differently. Some don't respond with great emotion and may appear not to be listening. They may simply want to carry on with whatever they were doing or react for a moment and then return to what they were doing. It helps to talk with them again and again. Feelings may come out in other ways at other times. If there is a change in their behaviour, it is important to speak with them about it. I let Anya know it is OK to feel sad and mad, but screaming at supper and calling her brother names was not a good way to let her feelings out. I reminded her that we can't help what we feel but with practice we can change how we behave. I admitted to her that I didn't always find it easy to behave well. We laughed.

Both Anya and Arjun have seen me cry. I've told them why I'm crying. Children learn from example. They see me cry at home and so they learn that crying is a healthy way to express feelings.

Someone to turn to

I wish I had talked with our good friend who is also a disabled mum, in front of Anya and Arjun about what was happening, and encouraged them to speak with her too. I know she would have helped them to understand what was happening, to understand their own feelings, and to have fun. It is common for children to want to protect parents from pain, so they avoid asking questions that they think might upset their mother or father. But children still need to ask somebody those questions, share feelings and be reminded that it is OK to have fun.

Involve the children

Like all children, Anya and Arjun like to feel useful and included. They enjoy getting me a blanket and a cup of tea. As I get very tired, I ask them more often to set the table and clear up. They aren't always happy to help with household chores and I have to be careful not to make them feel overburdened.

Involve the school

I don't have a close relationship with their teacher or any other school person but I wish I had been able to let the school know what was happening. I prefer to keep a public persona of being strong and OK. It might have been easier for Anya and Arjun if I had spoken with their teacher so she might have been more aware of the reasons for changes in their behaviour.

Challenge prejudices and watch out for bullying

Anya told me about two girls in her class not wanting her to play with them. Anya and I spoke about why they might be doing this, that there might be unhappiness in their own lives. I did wonder if she was being targeted for bullying because of my patch and cane. When there is difference, there is often bullying. While we, the disabled parent, might meet with prejudice directly, sadly our children may experience it too.

If you suspect that your child might be being bullied, talk with them about it. Find out what has happened and let them know that no one deserves to be bullied. It is also possible that children in changing circumstances, like when illness affects a family, become bullies. Again, it is important to speak with them and let them know that feeling angry is OK but bullying is not acceptable.

Encourage fun

My energy is a lot less right now and I”m not able to go out and do as much as before. So I encourage my children to do more at home with me. I've learned that I need to give them more one-to-one time so they don't fight for my limited attention.

Arjun and Anya are already well involved in after school clubs and don't shrink from having a good time. But that is not the case for all children. Children need reminding that it is good to laugh and to enjoy what makes them feel happy. Most schools offer activities after school and during holidays.

Hindsight is a wonderful thing. I wish I'd been more supportive and understanding towards my children. I wish I could have lessened the traumas they experienced because of my own traumas. I'll keep my article as a reminder for next time. I hope it'll be of help to other parents, too.

First published DPPI Journal, Issue 73: Summer 2011