Thursday, July 26, 2012

'Life is not just about achieving'

We had a tremendous response to our magazine interview with former Canadian Olympian Silken Laumann (above right), stepparent to daughter Kilee (left), 16, who has autism. Here is an uncut version which couldn't be squeezed in its entirety into the print issue. I know it had me thinking long and hard! Thanks Silken! Louise

 Silken Laumann rows into autism's turbulent waters
‘Life is not just about achieving, it’s about being present’ former Olympian says

Silken Laumann is a former world rowing champion and one of Canada’s greatest Olympians – winning two silvers and a bronze.

Less well known is the fact that in 2010, at age 45, Silken became a special-needs mom.

That year she and her partner David Patchell-Evans (known as Patch), founder and CEO of GoodLife Fitness, moved in together in Victoria, B.C., each bringing two children to their new family.

Patch’s daughter Kilee, 16, has autism and requires round-the-clock care.

The other children are William and Tygre, both 14, and Kate, 12.

For Silken, an elite athlete who once believed anything could be achieved through hard work, the reality of raising a teen with disabilities came as both a shock and a revelation. We spoke about her new life.

BLOOM: Tell us a bit about your daughter Kilee.

Silken Laumann: Kilee is 16 and she’s profoundly autistic. She talks but in a very limited way. She’s been diagnosed as cognitively disabled and operates around the age of two or three. She has episodes where she can have some pretty impressive meltdowns. That said, Kilee is a very passionate person. She has this really happy, loving energy a lot of the time. She loves to be active like her dad – hiking and swimming. She's a downhill skier who's skied double-black diamond. She's passionate about food. And she loves the other kids.

BLOOM: Were you exposed to disability before parenting Kilee?

Silken Laumann: I had a level of comfort because I volunteered at Ronald McDonald House, and we had quite a few kids with special needs come through the houses. And as a high-profile Canadian, I had spent a fair amount of time visiting kids in hospitals, including Holland Bloorview. But I certainly didn’t know much about autism and my exposure to disability wasn’t deep.

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.

BLOOM: I was raised with the idea that if you simply tried hard enough, anything was possible. It took a long time in raising my son with disabilities to come to the realization that that was a platitude that wasn’t true – that I didn’t control the outcome for my son and I couldn’t ‘fix’ him, nor was that a healthy aspiration.

Silken Laumann: My husband stills hold onto that dream that he's going to fix Kilee and she'll come out of autism, but for me it's easier because I've come into her life later. She’s still learning a lot, but I don't thinks she's coming out of autism.

When I've got myself into trouble has been when I get in that mode of being judgmental – seeing things that other people are doing wrong or reading books and thinking I know it all. I'll get all enthused about this or that therapy – like behaviour therapy – forgetting that they've already done it with Kilee and it was a really negative experience for her and didn't work. I realize now how arrogant that was. When I've gotten on my little high horse and preached is when things have been most stressful for Patch and I and when I've had the least amount of acceptance for Kilee.

Something we’re working on right now is having Kilee not pee in her bed. She gets terrible rashes. A year ago, I had it all mapped out: this is what we’re going to do and this is how many nights it will take. I got an alarm system for the bed and a bit of a schedule. Then I’d get frustrated and angry when she didn’t make progress. Now I think: Let’s not have any judgment around it and assume she’s trying her best.

BLOOM: How have your other kids adapted?

Silken Laumann: William has always just seemed to get Kilee and could communicate with her beyond what any of us could. He would tell us what she wanted: 'Mom, she doesn't want to do that' or 'Mom, she feels like this when you say that.' It took my daughter Kate longer to relax to enjoy Kilee because at one point she had a physical fear of Kilee, which was legitimate because Kilee outweighed her about three to one.

It's funny the things they're jealous of: just the other day William went on about how Kilee has her own bathroom in her bedroom. And I said of course she has her own bathroom, she's up 20 times a night and the bathroom is the biggest blessing. But I'm the oldest, he said. I tried to go a little deeper because I thought this really isn't about the bathroom. And then he said: She's also got an iPad and I don't. So I gave him permission to feel angry, and to tell me that Kilee doesn’t get in trouble for her bad behaviour, that we have to leave the room and it should be Kilee. He was angry about a whole bunch of stuff, and I need to respect that this isn’t always easy for the kids. I believe though, that my kids will gain more from having Kilee in their life than they’ll be hindered. I believe it makes them all better people. My biggest issue when it comes to Kilee and all the kids is safety. My number one job is to keep all my kids safe.

BLOOM: How has being an Olympian champion made it harder or easier to accept Kilee?

Silken Laumann: Where it's helped is that I'm very strong and determined. Given some of the challenges we've had – bringing not only a blended family together but bringing a family with a profoundly autistic child together – I think I have a huge capacity for energy and endurance. And a lot of that came from being an athlete. Some of it is just my character. It's helpful to have a high level of energy, to know yourself well, and to be honest with yourself. I can't imagine having a child with a really challenging disability at age 25 when you’re still discovering yourself. I have a huge amount of empathy for Patch and his previous partner Tammy and what they went through in those early years.

BLOOM: Have you reevaluated some of your values and beliefs?

Silken Laumann: In my days as an Olympian I think I had a na├»ve idea that I had more control over my life than I actually had – and I was much more controlling and determined that through hard work anything could be achieved. I thought that you just keep going at it till you solve the problem. But human beings aren't like that. We don't solve our own problems that way. And that's a journey I've been on for over 20 years.

I’ve discovered that life is not just about achieving, it's about being present. It's not about being in control but opening up every day to the wonders that life presents to you. And that happens in your heart, not your head.

With Kilee there are still times when that Olympic athlete comes out in me and I'll say 'We're going to do this and this, and this will happen' but I know that doesn't work.

More and more, every single day, I see Kilee for who she is. And every time we try to tell her who she is and this is what she's going to do, she feels a sense of failure.

For example, 'You're going to learn to write your name.' Well, that may never happen for her. And as a parent of an autistic child you're riding this fine balance: you don't want to give up trying different things because there might be a piece of the puzzle that gets put together, but you want to accept your child for who they are. If you’re always saying 'I'm only going to listen to you if you talk in full sentences' you can’t enjoy your child. You can’t see their gifts.

BLOOM: How has Kilee changed your family?

Silken Laumann: She’s slowed us down. Patch is so high energy and so are the other kids and I. Kilee brings us all to a level of peace and slowness. We slow down for her and spend more time at home because of her and it's a good thing.

William is an almost 15-year-old boy who's 6 foot 4 and I can't think of a more awkward age to have a profoundly and obviously different sister. But he introduces his friends to Kilee and answers their questions. He includes her. If they're all going out to the hot tub he'll ask her if she'd like to come. It's the same with my daughter. It's she's beading, she'll bead with Kilee. I never get the feeling that my kids spend time with Kilee because they have to.

BLOOM: Do you look at life differently now?

Silken Laumann: As a parent there's a tendency to constantly be looking forward – to when your kid finishes university or when you figure out your daughter's dyslexia. You’ve always got something to look forward to. With Kilee, there’s this knowledge that she’s going to be in some ways a child for a long, long time. She's growing up but her needs are still very much that of a child: she needs 24-hour supervision.

It makes me feel more patient about life. It's not about what will happen tomorrow. It's more about today and being together and enjoying. I know a lot of parents of kids with disabilities worry a lot about the future. I don't. I've taken enough risks in my life and had enough disappointments that I have this feeling very deep within me that no matter what happens with Kilee, even if her behaviour escalates, we'll have the strength to make it through.

Patch is more concerned. He gets really worried about things. We’re very fortunate in that we have the financial ability to provide Kilee with the support she needs for the rest of her life. That's huge and I will be very open in saying that. I know there are many parents who don't have that kind of support. Their worries are different from ours. Our worries aren't financial – they're around her happiness and safety and we have more options than a lot of families.

BLOOM: I don’t know of many blended families that include a child with disability. Do you bring an objectivity that is harder for a biological parent to have?

Silken Laumann: I think I do bring fresh eyes. I love Kilee and more and more, as time unfolds, I love her as I love my own children. But there is a difference – and most stepparents would say that, particularly in the beginning. You've had your children your whole life, you've given birth to them, seen them as babies. I didn't have that with Kilee. I didn't climb the mountains Patch climbed with her. I have an objectivity that he can’t have.

The thing he does have is a sense of failure – that he didn't do enough. I think guilt is something parents have anyway, but 10 times more when you're the biological parent. You read these books and they tell you that if you do everything right you're supposed to cure your kid and take them out of autism. But most kids don't come out of autism.

At 16 Kilee is profoundly autistic. If there's a scale, it's easy to say we failed. She's not doing as great as this kid or that kid. Patch carries a level of guilt about that. I know it's irrational and I know it's not helpful, but I get where it's coming from.

I do have a child diagnosed with ADD and dyslexia and the other with dysgraphia, but these are mild learning issues. And even then, I’ve had guilt: Was I structured enough? Maybe if I’d been a different kind of person they wouldn’t be so affected.

BLOOM: I’ve come to the conclusion in raising my son that we are largely ‘gifted’ with our abilities at birth, as opposed to ‘earning’ what we get in life through hard work. What do you think?

Silken Laumann: We laud intellect in our culture. We applaud achievement to the detriment of everything else. And when you're talking about achievement for Olympic athletes, you have to be born with the body. I was born gifted physically and I did a lot with that gift. But I couldn't have done anything if I hadn't had the gift physically.

People talk about (natural) physical talent and hard work in sports, but they tend to downplay the physical talent and that's huge in Olympic athletes.

BLOOM: Do you ever feel burdened by people’s attitudes about Kilee’s behaviour?

Silken Laumann: What I tell myself now is it's not my business to get into other people's heads. Last fall we were in Sidney, Victoria with Kilee. She has these plastic animals that are like comfort objects she likes to carry. We walked by this toy store and they had these really high-end animals in the window and she lunged into the store and started clearing the shelf. People are leaving the toy store and Patch and I are trying to get her out of there. We can’t stop to explain and I’m hoping that people get it at some level – that it's not our fault and it's not her fault. Usually we go back afterwards and explain.

BLOOM: Moms of teens with autism have been found to have stress levels that mirror that of combat soldiers. How do you manage stress?

Silken Laumann: As mothers, it's the most challenging thing to look after ourselves. It's been drilled into our heads that we sacrifice for our kids and we give up for our kids. I say hogwash. We are human beings. We need to be constantly renewing our energy so we have the capacity to give emotionally. You can't do it if you run out of life force.

I see moms in particular who have given up everything for their special-needs kid and I get it – sometimes who else do you go to? And I don’t want to give them something else to feel crappy about.

But I think we can fool ourselves when we get into a place of seeing ourselves as indispensable and thinking that no one else can care for our child. It won’t kill your kid to be misunderstood by a caregiver once in a while so that you can keep yourself sane and happy. At the end of the day, moms who aren’t looking out for themselves will die younger, have health problems, a poorer quality of life and far less emotional capacity.

You have to constantly look for opportunities to take care of yourself. When I go to my son’s soccer game, I’ll put on my running shoes and walk around the field, and every lap I’ll stop and do squat jumps and push-ups.

Silken Laumann is writing her autobiography and training to be a life coach. She is a spokesperson for GoodLife Kids Foundation, which funds programs to ensure every Canadian kid lives an active life. Silken says she finds balance in her own life through yoga, exercise and art. Photo by Beth Hayhurst.


Thanks so much for this! I am a step-mother of a profoundly disabled child, this really spoke to me. It's a strange and unique position that is not often written about. I really appreciate Silken Laumann sharing herself in this way, and look forward to her autobiography!

I really appreciate the article and especially found helpful the statements she made about separating behaviour from the person, people seeing only the top layer which isn't always the best, her sharing her personality tendencies and how Kilee has slowed her down, and especially that life is not about achieving but about being present and open to what life offers. It really helped me re-frame the struggles I've had accepting what's happened in our lives.