'In some ways we have a stronger family unit'
This is part of a BLOOM series of interviews with parents who have more than one child with a disability. Andrew Levin (above centre) is dad to Kenneth, 17, and Cameron, 14, who both have autism. Thanks Andrew! Louise
BLOOM: How are the boys affected in everyday life?
Andrew Levin: They’re fully functional in terms of changing, toileting and eating, but they can’t be left to their own devices for any length of time. Kenneth is somewhat verbal but Cameron has very little vocabulary.
BLOOM: What emotions did you experience when you learned Cameron also had autism?
Andrew Levin: I still remember the exact moment when I realized there was a bloody good chance that Cameron had autism. I went to pick him up at daycare – he was less than two – and all the kids were gathered in a circle having some sort of reading or social activity and Cameron was on the other side of the room playing Lego. I remember saying: “Uh oh.” I knew from Kenneth so well that if Cameron was indifferent to what the other children were doing that wasn’t good. In some ways, because I expected it, it wasn’t as difficult. But in some ways I was more devastated because with Cameron being my second child, I knew what autism was. The writing was on the wall. There was no asking “what does this mean?” or relying on someone else to tell me what was involved. I think my wife Nellie and I were both equally devastated, in our own ways.
BLOOM: What practical challenges do you face?
Andrew Levin: It’s one thing to restructure your life to meet one set of special needs, but it’s more complicated to restructure life to meet the needs of two children who are quite different, even though they have the same diagnosis. For example, we can leave Kenneth alone for short periods of time in the house if he knows where we’re going and that we’ll be back soon. But we can’t leave Cameron by himself for even five minutes, because he’s much more mischievous and could get up to something. Kenneth likes going to sports events and we’d like to go as a family, but Cameron can’t stand huge auditoriums. On weekends, when most families go out as a group, we often split up. I take one of the boys somewhere and Nellie takes the other.
BLOOM: Are there other issues?
Andrew Levin: What the future holds is a big concern. I’m a man in my mid 40s and I have two kids who can’t take care of themselves. We have real concerns about down the road when my wife and I can’t care for our kids anymore.
BLOOM: What strategies enable you to manage?
Andrew Levin: Good support is absolutely essential. You can’t do this alone. My wife is a stay-at-home mom and we have a selection of caregivers we call on an ad-hoc basis. In the summer we have a caregiver for each boy for several hours each day, so that each can do the things they enjoy doing. There are resources out there and you have to investigate them. Some may be a waste of time but others are immensely valuable. As tough as it’s been, we couldn’t have done this without support and assistance. The other thing is you shouldn’t hide yourself away because of your children. You need to be out there exposing your children as much as possible to the real world. You don’t want to find yourself in a situation where you’re cut off in your house and it’s just you and your child with a disability. You want to keep visible and active.
BLOOM: How do you relieve stress?
Andrew Levin: My wife will head out for a few hours to get away and I have time to myself at work and go to the gym four times a week. I find that refreshing and it helps clear your mind. The reality is we’ve been dealing with this since 1997 so while it’s stressful, it’s almost our lifestyle now.
BLOOM: What have you learned?
Andrew Levin: I like to think I get less stressed about things that aren’t important. I’m more easy-going. I have no desire to have a job where I work 80 hours a week. Seven years ago I switched from being a lawyer working long hours in private practice to doing legal work for an insurance company. That gives me the flexibility to be home by 5:15 and spend time with my kids. One positive thing about kids with autism is that they maintain an innocence to them which makes them enjoyable to be around – even when they’re older. If my sons didn’t have autism at age 17 and 14 they’d want nothing to do with me. They’d be hanging out with friends. But my kids like to be around me. Notwithstanding all these other issues, in some ways we have a stronger family unit.