How to support siblings of children with additional needs

Caring for siblings of children with special needs

This is a brilliant blog post by Phoebe on the challenges siblings of children with additional needs go through.  Read and share this with others:

“She ruins everything!” I said to my mom when I was six and my big sister bumped into an art project I’d been working on all day.

And again when I was twelve and she wanted to hang out with me and my friends at my slumber party.

And again when I was seventeen and she snuck upstairs when I was watching a movie with a boyfriend.

Being fourteen months younger than my sister with Down syndrome wasn’t always easy. We were a grade apart in school, in a town where everyone knew everyone else. I was occasionally referred to as “Syble’s sister” instead of by my own name. When people made jokes about the kids on the short bus or “retards” I had to decide if I was going to stand up for my sister and bring more attention to myself or just let it go. And even at home, I tried to be perfect and low maintenance to make up for the extra work and attention my parents had to put into her.

And that’s why when I look into the eyes of my son David after he’s just said “He ruins everything!” referring to his brother with autism, I get it. I so get it. I get the frustration and the fear. I get the exhaustion and the embarrassment. I relive the moments I had at each stage I went through as a special-needs sibling. And it’s because of that experience I try to remember a few things.

Go read Phoebe’s blog for her advice on what she tries to do for her son, it includes:

  • I don’t shame my typical son for the way he is feeling in the moment.
  • I remind him our feelings can lie to us.
  • I celebrate the accomplishments of both boys.
  • I give him opportunities to grow in areas of interest.
  • I make sure we have one-on-one time together.
  • I say thank you every day.

Sally Phillips on parenting a child with additional needs in church

Sally PhillipsRuth Jackson from Childrenswork Magazine has done a great interview with actress Sally Philips on parenting a child with additional needs in church.  Sally and her husband have three sons and Olly, their eldest (aged 11) has Down’s syndrome.

RJ: Not every church has the necessary resources and manpower to serve children with special educational needs (SEN). Do you have any advice for churches and children’s workers?

SP: Good will is a good start but it’s often not enough. Generally, children’s workers are not prepared enough and the activities not differentiated enough so that kids with SEN can access them. There’s also a lack of volunteers. In school, Olly has one-to-one support. In church, he doesn’t, even though he still needs it. In school, his lessons are adapted, in church, he has to do the same as the others. If you prepare the lesson with multi-sensory options, all of the children will benefit, as there are many typically developing kids who prefer different ways of learning.

Incidentally, more traditional forms of church are much easier for SEN adults to access than ‘as the Spirit leads’ churches. The ritual and physicalisation of worship and prayer, the prayer book that they can follow, the same pattern every week, the weekly Eucharist etc are very helpful for people whose primary mode of communication may not be verbal.

Sally goes on to give some really helpful practical ideas that churches can use to be more inclusive to children with additional needs – it’s well worth taking the time to read this.