Everything you want to know about siblings

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness.

Anjet, 38, grew up with an older brother Jalbert, who was born with a visual disability and autism due to exposure to a parasitic infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69. Her goal is to let all siblings know that they’re not alone, their thoughts and feelings matter, and that they must pursue their own dreams to be happy. Only then can their relationship with their brother or sister as an adult "come from the heart, rather than feel like a must-do obligation," Anjet says.

Look to the September issue of BLOOM magazine for a full interview with Anjet. Here, we include her advice for parents raising a child with disability and their siblings.

BLOOM: What advice would you give parents?

Anjet van Dijken: My general advice is: Accept the situation with your child with a disability as it is, as soon as you can. Don’t stay in the fear and guilt. Very, very easy to say, but really—there are no other options. Fear is the worst guidance in life. It is toxic for the whole family. So try and work on acceptance every day, and do not hesitate a second to ask for assistance.

• Look for ways to help yourself. You have to fill yourself up in order to be able to give to your children. Acceptance is also accepting that you can’t do something anymore, or that it’s hard. Your family needs support, some outside eyes, to make sure you’re doing enough for yourself. Connect with other parents of children with disabilities or find a therapist who has worked with families like yours. You need help to learn how not to be so worried or so hard on yourself, so that you can be open to your other children.
• Try not to be too hard on yourself with choices you make for your child with disability. You’re always being judged, no matter what you do.
• Isolation is the biggest threat to a mother and father. If I had a baby with a disability, I would phone my friends and say: ‘We’re making a date in six months and we’re going out. Even if I don’t want to, you’re taking me out.’ Understand that because having a child with a disability is like learning to adapt to a new culture with new rules, your friends who don’t have this experience will not understand you. Try not to blame them.
• Accept help. Maybe a neighbour who loves your child and sees your child for who he is will offer to babysit. Parents always say ‘No, I can do it on my own.’ ‘I can do it on my own’ is the worst thought you can have, because at some point you won’t survive your child.
• Future planning is important. I’m very proud that my mom made the decision for my brother to go to a home and she stuck to it. Having a decision gives the whole family an ease.
• Know that at different times you won’t always be the best person for your children to talk to about their relationship with their disabled brother or sister. Look for ways to connect your children with other siblings (support groups, books, through your children’s rehab centre).
• If your child goes to a school or daycare for children with disability, ask the school if they can do a day for the classmates’ siblings. Maybe there’s a girl that your daughter clicks with and she writes down her e-mail address and they keep that bond.
• Be aware of how much you ask of your other children. If you ask a sibling to do something, they’ll always immediately say ‘yes.’ After the birth of my son I couldn’t figure out why I didn’t enjoy feeding him. And then I had a flashback to when I was little and I always had to help my brother finish his plate. I’d forgotten about it, and I’d never told my brother that I hated it. I was taught not to talk about my emotions and it only came out after I was 30.
• Try to have open communication. When writing my book I noticed that the positive life stories for siblings were when the parents would sit down after dinner and talk about things openly and everyone had a right to speak their own mind. But you can’t have open communication when a father or mother is overcome with fear or guilt. That’s why parents need to get support for themselves. Dr. Tinneke Moyson, who has researched quality of life in siblings, says that open communication in the family is the most important thing.
• Help your children develop their dreams. When your son does something out of the ordinary, or says ‘I really want to do this,’ and it has nothing to do with the disabled sibling, be proud.
• I loved music and when I came home from school my mother would be ironing and she’d have my house music on. She’d be enjoying it and I felt that I had inspired her. Not because I was such a good carer for my brother, but because I had picked up something I liked and it made her happy.
• A lot of siblings say they’ve had so much praise for their good behaviour and that’s part of the problem. They feel they can’t live up to that standard, so they feel a bit of a failure. Other than being given the role of the good child, they’re often not stimulated in other areas. They never learn to diversify. Emphasize other things in your child’s character, not just that they’re attentive or helpful. Sometimes they don’t like helping!
• Siblings mimic how their parents deal with situations. They react not just to what you say, but what they feel. If you’re sad, but you’re trying to hide your emotions, the child will try to do the same. But the child comes to believe ‘My emotions don’t count.’
• Think about what other people would do in your situation, or ask a friend or your child’s teacher for advice regarding your children who don’t have disabilities. ‘What is your view of my son? How do you think he’s doing?’ If you’re absorbed by problems, it’s hard to observe what’s happening in your other children.
• A researcher said that a lot of parents of children with disabilities think that the normal rules of parenting—like giving each child the attention they need—don’t apply anymore. But it’s not only the disabled child who needs to be observed. It’s the other children too. It’s good to get back into that normality. It’s not so much the amount of time you spend with your other children, but thinking about them, observing them.

Anjet can be reached on Twitter @jetalerte. Her book is currently available in Dutch but she would love to hear from parents who would like it translated into English. Anjet runs a Facebook group with almost 100 siblings aged 14-50 called Brother and Sister.

Other resources:

Sibling Support Project

Sibling Leadership Network