Friday, 5 October 2012

Caregiving for Step-Children

Parenting healthy children is challenging, so imagine parenting a step-child with disabilities.  Blended families are nearly the norm nowadays and it follows that a contemporary phenomenon will be shell shocked step-mothers or step-fathers and their children who are learning about disability for the first time in their new blended family setting.

Louise Kinross is the communications guru at Toronto's Holland Bloorview Kids' Rehabilitation Hospital.  Louise is Ben's mother and Ben has complicated disabilities.  Louise uses her own experience together with her extraordinary capacity for empathetic listening to create BLOOM, an online magazine for special needs families.  It's a terrific resource and I highly recommend it.

A couple of months ago, Louise interviewed a famous Canadian Olympic rower, Silken Laumann.  Silken was speaking about her own blended family which includes her husband's teenaged daughter Kilee, who sometimes has challenging behaviours.  Kilee is diagnosed with autism.

If you are parenting a step-child with disabilities, you will find this interview with Silken from BLOOM  interesting reading.  

BLOOM: What was it like to become a parent to a teen with autism?

Silken Laumann: It's been quite a journey, as you can imagine. The first time Kilee grabbed me by the hair, I did everything wrong. I screamed. I fought back. I cried. I'm an Olympic athlete trained to jump out of the starting gate with a heart rate of 175, and I reacted like a woman being attacked in a dark alley. It wasn't rational and I was ashamed and embarrassed afterwards. She was crying and I was crying. 

It's been an upward positive swing from there as far as me managing my emotions around Kilee's physical outbursts – which happen less and less. I'm better at respecting her boundaries and I can see the signs of her escalating. I'm much more in tune with her energy when it starts to switch, so I'm much less likely to be in a situation where she grabs my hair and starts to pull.

I went into the marriage believing it was the right thing to do for all our kids and that it was the right thing for our relationship and that there would be more to gain than to lose by coming together as a family. But all along there’s been this discussion of what if she hurts one of the children? What if we can’t handle it? There were some ‘what ifs’ we had to get through, and I kept saying I believe it will work out. There are things we can do if things get really bad, such as living separately for a while. My number one job as a parent is to keep my kids safe so if I ever felt that wasn’t possible we’d have to change our living arrangements. But we’ve been able to get the help with Kilee that she needs and she’s more settled in her outbursts.  

BLOOM: What were the first few months living together like?

Silken Laumann: I don't think anything could have prepared me for it. At the time I thought I was doing okay and I thought it was going well, but in retrospect it was really hard. Kilee moved from London, Ont. to British Columbia, which, as you can imagine with autism, was very traumatic for her. Her behaviour escalated within three weeks of moving out and we had outburst after outburst. Unlike my other kids, Kilee couldn't yell and say 'I hate you.' She'd come running at me or biting her hand or jumping up and down like a two-year-old. In the beginning I was far too judgmental. I didn't always separate the behaviour from the person. I couldn't see how much she was struggling.

I'd get really angry at my husband too, thinking he didn't have enough discipline around setting boundaries for Kilee. It took me a while to get it – to start to understand the complexities of the situation and the complexities of Kilee. 

This is what happens with so many special-needs children. People just see the top layer and sometimes the top layer is not the best layer. With Kilee, as time went on, I saw layer after layer after layer. And as I have learned to be more still with her and much less judgmental, I can see just how vulnerable she is, just how hard she’s trying, and just how frustrated she sometimes feels. And we're learning a language together on how to express that in a more helpful way than hurting or jumping or screaming.

I’ve come to understand that cause-and-effect consequences don’t work with Kilee. That was hard for me because I’ve parented my children on natural consequences. But that doesn’t work for Kilee. If she throws her lunch out the window – which she did the other day on the drive to school – you can’t just not give her lunch. 

When my other kids’ behaviour stunk, I always tried to look at the antecedent, knowing it wasn’t just about what was happening in the moment. But with Kilee it’s so much harder to figure that out, because she’s so limited with language about emotions. You have to pay so much attention.

In the beginning it felt like Patch and I were always problem-solving around Kilee and I was so afraid my kids would feel this was 'all about Kilee.' It was important for me to say there will be certain accommodations made for Kilee, but the whole family will not be centred around one person. When Patch suggested putting locks on doors I said no, there's a point for me where we're not turning this into a group home. This is a family and everyone is important. Something that really helped was hiring a caregiver in the evening hours so we could give more equal energy to the kids.

BLOOM: What have you learned since Kilee came into your life?

Silken Laumann: I'm a very impatient and demanding person – demanding of myself – and that trickles over to people around me. One of my lifelong journeys is to not be so impatient and to not be so definite and confident that I know what needs to be done. Because with Kilee, none of that works. In fact, what's needed is the exact opposite.

With Kilee, 90 per cent is feelings, not verbal communication. When she's vibrating high I can physically feel this big energy. And when she's going off into a dark energy, you feel it and see it in her eyes. 

Having Kilee in my life has made me slow down, and shown me how fundamental it is to focus on the positive, because positive reinforcement for Kilee is so important. I need to look at what I can do to encourage her and compliment her, even when she's acting out, because sometimes the best way to help her switch gears when she's sobbing or biting her hand is to start talking to her. I'll say: 'Oh Kilee, you're such a good girl and you have such a big heart. And we love you so much.' And I keep going at it and feeling it with her. Because I know that in that moment she's beating herself up.

What have YOU learned by parenting step-children?
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