This voices from around the world comes to you from the director of In His Image.
I was at a meeting when a pastor asked me about my family. As I shared about both my children, as well as the special needs of my family, his response was “How does your other child feel about the special needs child?” I was pleasantly surprised. It was a question hardly anyone ever puts to me.
The sibling of a special needs child is somehow expected to be really understanding. When mothers are busy caring for the needs of their sibling, they are expected to gently wait, to help out, to tend to them. They have to be forever understanding, and are not even allowed the liberty of having a routine sibling rivalry. Because their siblings needs are ‘more’, they often feel guilty for wanting attention too. We expect the siblings to have perfect love–kind, gentle, never jealous–but they too are children with needs and wishes. I know a child who used to get into trouble if he asked for his favorite food to be made, but when the special needs child asked for it, it was done immediately. He was expected to always understand why he would always stand second place to his sibling. Little did the family realise that the child was getting resentful of his sibling.
Each member of the family is impacted by the disability of a child in the home. Each member may react in a different way. When we as parents are devastated, hearing that our child is different, we generally do not think about the other child who is also devastated by it. His/her life will be changed forever. Even as we struggle to cope with a special needs diagnosis, parents must consider our other children, who may not know how to react, may not understand what is going on, and may sometimes even blame themselves.
To parents I say, do not allow your special needs child to rule the house (believe me, they do try to do that). As Dr. Steven Gutstein puts it for such families, “We are first families. Do not let the disability overtake your family. Let us not have autistic families. Let us have families that have children with autism” (or any other disability for that matter). Parents need to spend one-on-one time with our other children. We can schedule some time exclusively with them where they are allowed to be themselves, without having to give way to the needs of their sibling.
Relatives and friends can play a big role in helping siblings have social relationships not centered on special needs. If it is possible, relatives and friends can also spend some time with the special needs child, so the parents can devote some time to their other child(ren). Whether you are a parent, relative, or friend, you can provide a safe environment for siblings of special needs children to share their feelings and thoughts about life, family, and disability. You will find they have much to talk about when they find someone provides them a listening and non-judgemental ear.
My other child has a foster family who is very close to us and has guided us with our special needs child (as they are doctors themselves). They have argued and fought with us for the needs of our other child, when they have felt we have not paid him enough attention. He spends one weekend a month with them, away from us, where he is the youngest and pampered to the hilt. He loves it. I praise God for friends like that, who have stood by our son and us. This is what the church is there for.
Churches, families and friends–I’m speaking to you with deep vulnerability now–as you reach out to families with special needs children, PLEASE try not to give unsolicited advice. For the most part, parents know what needs to be done. It’s doing it, day in and day out, that is difficult. What they need is someone to stand by them. One of the most painful things for me was to hear from some concerned person that another special needs child improved because the mother worked so hard with the child, and that is what I needed to do. After spending so much time, energy and effort, what I heard was, “You are not doing enough.”
God’s primary unit of a society is a family. Let us show our love to the ‘special families’ by undergirding, supporting and encouraging them into being what God intends them to be. And let us also remember the ‘special sibling’ who often gets overlooked in our care for the special needs child.