Thursday, April 5, 2012

'I manage Carly Inc.'

















At the age of two, Carly Fleischmann (centre) was diagnosed with severe autism and an oral-motor condition that prevented her from speaking. Doctors predicted that she would never develop beyond the abilities of a small child. Then, at the age of 10, she had a breakthrough when she typed a message on her therapist’s laptop. Seven years later she’s in a gifted program at a regular Toronto high school. Carly’s Voice: Breaking Through Autism, is a new memoir written by her father Arthur Fleischmann, which includes much of Carly’s writing. I interviewed Carly’s mom Tammy Starr (photo right, with Carly's twin sister Taryn left) about their experiences.

BLOOM: How does it feel now that the book has come out?

Tammy Starr: I’m very proud of the book. I knew Arthur had written a lovely and important book. But for me it was nerve-wracking. Even though my life has been public in my role as an advocate for Carly and other families with children with autism, this was very personal. I’ve been out there as a fighter, but I’ve never had our personal life revealed to this extent.

BLOOM: I understand that initially you didn’t read the book. Why?

Tammy Starr: I started to read it a number of times but each time I started to cry. It was too hard to take. I knew the story – it was my life – but I found it difficult to relive. It was hard enough to go through it the first time. This book took a lot out of Arthur emotionally. I never would have been able to write it.

BLOOM: I’ve only just begun the book, but I can see that Carly having a twin, Taryn, would accentuate the differences in their development and also in how people treated them.

Tammy Starr: You can see how one is living a typical, full life on a very normal trajectory and the other one is being left behind in many ways. Carly wasn’t able to hold her ground or keep up with peers, but also, people who knew I had twins would invite Taryn to their child’s birthday party and not Carly. At one point Carly was too young to understand, but obviously there came a time when I’m sure she understood what was going on.

BLOOM: It seems they have a special bond.

Tammy Starr: More than I can understand. It comes out in the birthday messages Carly sends to Taryn. The other night Carly was having a hard time falling asleep and kept coming out of her room and we were really tired. Taryn was still up and running around, and I said: “Could you please help us?” I don’t generally ask her to help us. I want to keep her relationship with Carly as a sister not a caregiver. The next thing I knew Carly was giggling and giggling in her bed and Taryn left her room and Carly didn’t come out. They have this closeness, this bond. I really didn’t know in the beginning how much Carly meant to Taryn. I didn’t know if she was an embarrassment or what. There were times in the tween years where Carly did embarrass Taryn, but all kids embarrass their siblings and Taryn’s past that. It’s hard for Taryn. On the one hand, she has all these friends and an active social life and just got her G1 driving licence. And when she leaves the house she leaves her sister behind. But I’ve never said “Please include Carly.” That’s not fair to either of them. Carly doesn’t want to be somebody’s burden.

BLOOM: What were the first 10 years of Carly’s life like, before she could type?

Tammy Starr: She wasn’t aggressive, but she was destructive to things. You could never leave her alone. She didn’t stop moving. We used to say she was worse than the Energizer bunny. She had these compulsions pushing her and she wouldn’t sleep and we’d lie with her in bed. At 1 or 2 in the morning we’d think she was just about to drift off and she’d bolt up in bed and start emptying her dresser. Even though we were fortunate to have help over the years, it was a 24/7 proposition and we always had to be on our guard. If someone wasn’t with her, she wasn’t safe by herself.

BLOOM: You mentioned that you and Arthur had different roles in raising Carly. Can you explain?

Tammy Starr: In general I’m Carly’s business manager. I manage Carly Inc. I’m the fighter and I’m the one out there in court, but I’m not her therapist or caregiver. I’m her mother. I make sure everyone is there and everyone shows up and all the pieces are in place. But I’m not the one that delivers her programs. I’m not a patient person. I’ve also been sick a lot. I’ve had chemotherapy twice since the girls were born, as well as depression. Arthur has much more physical and emotional stamina to be in the trenches with Carly. He’s been closer to her on a parenting level. I’m the one who gets all the experts around the table for a team meeting.

BLOOM: What has been key in unlocking Carly’s communication?

Tammy Starr: The collaboration and dedication and imagination of her two main therapists – Howard and Barb – in terms of delivering programming to her through an Applied Behavioural Analysis (ABA) lens. They were constantly brainstorming about what they’d done and what was next. They never gave up on her and always pushed her. She had a high level of consistency and intervention over many years. All of Carly’s waking hours were delivered in an ABA environment.

BLOOM: What about technology?

Tammy Starr: The two main ones she uses are WordQ, a word-prediction software developed at Holland Bloorview, and Proloquo 2 Go, a communication software. WordQ allows her to type faster. With Proloquo, Carly will anticipate the words or phrases she wants for different activities and write them on her laptop, and then Howard will program them into Proloquo. Before we went to Los Angeles over the March break, she thought of specific things she’d want to say knowing who she’d be meeting. And before she went to camp she created lots and lots of pages to ensure she wasn’t misunderstood. For example, she has comments like “I need a break” or “Don’t take this personally. It’s my obsessive-compulsive disorder (OCD).” It allows her to explain herself to the world.

BLOOM: What did you learn about Carly after she began typing that you didn’t know before?

Tammy Starr: A ton. We knew she was smart and learning all the time. But we didn’t know she was just like her sister Taryn, except she has this body that doesn’t cooperate. Her brain and her sense of humour are like any other typical kid. I think we’re going to find that common stereotypes about people with autism are so off the mark. We learned Carly has so much empathy and concern for other people and wants to help other people. The idea that she’s closed off and not wanting to be a part of things is a bunch of crap. These kids want to be part of the world and they’re very sensitive and emotional. But they might not be able to show it. We learned Carly was loving and very aware of everything that was going on, but she just couldn’t communicate it. Being non-verbal doesn’t mean being disengaged or not aware or spaced out. It means your mouth doesn’t work. I feel badly about things I said in frustration or anger in the past because we didn’t know how aware she was.

BLOOM: What’s something you had wondered about Carly that you asked her after she began typing?

Tammy Starr: One of the things I said was “What do you think of autism?” She wrote: “I have it and people don’t want to see it.” At the time her self-esteem was very low.

BLOOM: What does Carly’s breakthrough mean for other children with autism?

Tammy Starr: We have to assume that that child understands everything you’re saying and speak to them and treat them like any other child. People still speak to Carly’s therapist or me, instead of talking directly to Carly. As Carly says, people talk in front of her back! You can never judge a book by its cover. Never take anything about these kids at face value. There are kids in there and when parents see glimpses of light and intelligence they’re real. And you have to go on that and believe it.

BLOOM: How would you describe Carly as a teenager?

Tammy Starr: She wants to be a typical teen like everyone else. She wants to go shopping and talk about boys and fit in. She has the same hopes and dreams in terms of school and travel and relationships. She and Taryn both want the same types of things.

BLOOM: How did Carly catch up academically once she began typing?

Tammy Starr: She’s had little formal academic exposure. It’s been in fits and starts because of placements that worked or didn’t work. But she has a photographic memory and it permeates everything. “I’ve never forgotten anything I’ve heard or seen,” she says. She says she can’t look at things straight on because her mind takes 10,000 pictures. She’s in a gifted program now and she takes a lot of the social sciences. She has an educational assistant with her. The curriculum is modified so that the teacher is satisfied that she knows the work. If there are 50 questions but she can show she knows the material in five to 10, that’s what she does.

BLOOM: What are her dreams for the future?

Tammy Starr: When she first started writing she said she wanted to work in a bagel store. Now she’s intent on going to the University of California at Los Angeles. We went on a tour while we were there recently. She loves interviewing celebrities and part of me thinks she will be doing something that involves journalism and writing. Temple Grandin is her hero. So perhaps she’ll do something similar in terms of writing and lecturing and travelling.

BLOOM: You mentioned that Carly struggles with OCD.

Tammy Starr: When she was 11 she was covered in bruises and we had her admitted to SickKids and they said she’s self-injurious and one doctor thought she was attending to voices. That made us laugh. Later on, Carly told us she was slapping herself to stop herself from doing something more destructive – like stripping the beds or emptying the armoires. It was a coping strategy for the OCD. She was trying to manage her inner compulsions and anxiety. Her OCD is something we still work on with her occupational therapist and social worker.

BLOOM: Have you been able to find any balance in your life as a parent?

Tammy Starr: When I’m in Toronto it’s full throttle and all-consuming. I get out of town when I can and I call it my autism-free zone. I have a good network of friends, although I tend to isolate a lot.

BLOOM: Tell me a bit about your autism advocacy work.

Tammy Starr: I have a strong sensitivity for the underdog and to not getting anything less than what a child needs. I haven’t always felt like I fit in and I was bullied when I was a child. So I’ve worked hard to advocate for families in the province who don’t know the ropes. The part I find frustrating is that there doesn’t seem to be a new generation of parents of kids aged five or six picking up the gauntlet.

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4 comments:

Powerful and compelling Interview. A lesson to all in life where the other side is not always visible and should be understood .

wow great and beautiful story just like interview i like it :)

Fascinating interview. Tammy sounds tired and vulnerable. I wonder if she would have preferred that the book had not been written. My heart goes out to her. Thank you for sharing!

I think the mother's comment that there are not enough young families picking up the gauntlet is a significant observation that warrants a fulsome discussion in our society.