Tami: The Other’s Mother

I recently wrote about Dillan Barmache, who has of late become something of a celebrity in my world. He’s 16 years old, autistic and non-verbal, and, since finding his voice by typing, he’s become a passionate advocate for other kids like him.

His story is amazing, and very inspiring. A recent set of videos he made with Apple (yes, as he wrote in his blog, ‘THE Apple’) reduced many of my friends to tears, and has been watched millions of times on YouTube in only a few weeks. To see the videos, which I highly recommend, click here for Dillan’s Voice and here for Dillan’s Path.

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I have had the good fortune of knowing his family for a few years. His little brother was in my daughter’s class, I used to chat to his dad at school pick-ups, and I liked his mother from the get-go. She’s instantly appealing, with a big, radiant smile, and always has something interesting to say. I would see her at events with her older son and wonder what his story was.

As I learned more, I was in equal parts impressed and intrigued. Tami is – like most of my favorite people – a beautiful, self-deprecating warrior. She’s smart as hell, fights for her kids with a passion, and laughs off compliments. She’s delightfully human.

What is interesting, for the purposes of this blog, is the story of how she helped her son escape his prison – the isolation of his non-verbal world. The way in which she stood her ground, explored alternatives and never gave up on her belief that there was more to her son than the system told her.

So yes, Dillan is the Other in this context. Which makes Tami, rather poetically, the Other’s mother. But, as I discovered, she certainly doesn’t feel ‘typical’ herself. Before she became Dillan’s mother in 1999, she was a dancer and always felt rather un-mainstream.

She describes herself as a rule follower and a law-abider who doesn’t by nature like to make waves, but that doesn’t mean she settles for easy answers. She has fought to get better help for Dillan because she knows it’s possible. I really respect that she can hold both of those possibilities – that we need structure, but that the structure can always be improved. It’s all about getting her son what he needs.

Autistic kids are not always understood, and those who can’t communicate well are often dismissed as incapable. The system also tries to ‘fix’ them. Dillan and Tami are fighting to show how wrong these perceptions can be.

When Dillan was five years old, she took him to Austin, Texas, to meet Soma Mukhopadhyay, mother of Tito (who is also autistic) and developer of the Rapid Prompting Method of communicating through spelling. This opened up the possibility that Dillan could communicate and, for Tami, it felt like oxygen. At age 10, they returned to Texas, and the real work started.

In seventh grade, Debbie Spengler, a therapist and communication partner, began to support Dillan in school, and that’s when his typing took off. He gave an extremely articulate and beautifully worded culmination speech at the end of eighth grade that went viral. He’s now in high school, in mainstream classes, some of them honors. He was recently approached by Apple to make a couple of videos, which is where we are now. Dillan is making an impact, and Tami has been with him every step of the way.

A few months ago, she and I sat down and talked. Since we both like to talk and have quite a capacity for tangents, our conversation went on for hours. But here are some of the highlights.

 

In the world of autism, non-autistic people are usually referred to as ‘typical’. This blog is about un-typical people, or Others. In what ways are you an Other?

In my life, I’ve always sought out something that was different from the mainstream way of doing things. I’m not a rebel. In my overt actions, I’m very by the book – you don’t ditch school, you do your homework. I was a dancer and studied acting, and I always had teachers who were a little more eccentric. I often found them to be more insightful and more gifted. When it comes to health, I always look for alternatives.

With Dillan, it would have been so much easier to go with the flow, and say ‘great, sign him up, let me know when he’s better.’ But when you are parenting a child whose needs are different from a typical child, you really have to look outside the box.

You’ve known Dillan was autistic since he was two years old. What has that meant for you?

As parents, we all worry that we’re not doing enough for our kids, or that maybe we overlooked something somewhere along the way that will do our children lasting damage. But the stakes have always been higher with Dillan. For most people, there’s an assumption that we make mistakes but the kids will mostly likely be ok. They take forever to give up the pacifier but they will. And they will leave home, get married, have their own kids, etc. You find comfort in that. That they’ll eventually stop sucking their thumb, they’ll eventually eat some veggies.

With Dillan, I didn’t have that comfort because development happens, but it doesn’t happen typically. And it requires a lot of support to develop to where they can really feel a part of the world, engage with their family, and communicate and learn.

In our culture, autism is often looked at as ‘wrong’ and needing to be fixed, needing to be cured, needing to be got rid of. The truth is it needs to be better understood.

What was it like watching other parents with typical kids?

There’s this road that everyone’s on, and their kids are all going to birthday parties and starting to speak. I remember so well being at mommy groups and hearing my friends say things like: ‘My daughter was sitting in the back seat the other day and said, “Mommy, I love you.” Oh, it’s so great when they start talking! Life gets so much easier.’

None of that was happening for us. That’s when the gap starts to widen. You’re going to all the same places that they’re going – you’re just not riding on the same road. And it’s a lonely road.

The bottom line is Dillan went many, many years without being seen or heard. Even at home where he knew he was loved, he was unable to connect and tell us ‘I love you’ back. He could speak a word here and there, but there was no way to gauge his level of understanding. And because of that, decisions were made about Dillan’s potential, and it was felt the proper placement was a separate autism classroom. Soma helped us to see that he might be able to attend general education classes. It planted a seed.

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What’s it like now?

I feel validated in some of the choices I made when he was younger. His challenges were very involved, and it wasn’t easy to see results quickly. If I had followed the book, Dillan would be receiving his education in a separate autism classroom, probably considered to be a very challenging child and considered ‘low functioning’, with a curriculum well below grade level. That’s potentially how he would have been seen for the rest of his life. So can I follow the book on this one? I can’t.

He’s always going to need support – that’s just the reality of it. But he’s funny and kind and insightful, and he’s got so much to contribute. I believe that he could have a relationship and a career. He may not get his body to do what he wants all the time, but his mind is amazing. Like he says, a mind is a terrible thing to waste. He regrets the years he wasn’t learning. It’s left a lot of scars for him. He’s now getting to be a ‘regular student’ and believes others need and should have that same opportunity. He wants all these kids who don’t yet have a voice to have a chance to be heard. That’s what drives us right now.

When his graduation speech went viral, how did Dillan feel?

I think that’s when he realized, ‘Wow, I can makes a difference.’ He realized the impact of his words. He said, ‘I never knew anybody would care.’ His thrust right now is to continue his communication and education, with a goal of college after high school. He has a strong, strong, strong passion that there are others out there like him, that we need to start opening our eyes and our minds, and give others the same opportunities that he has had.  We need to listen to the experiences of autistic individuals.

Do people think Dillan is a unique case?

Yes, often. We were able to follow the path of his friend, Ido, who at the time was the only non-verbal student on the general education curriculum in our community. Now there’s Dillan. And since Dillan, two other kids at his high school have started typing. Perceptions about kids like Dillan are all wrong. The world is not flat. We need people who are willing to look at the world a little differently.

Autism is not easy. I don’t think there’s anybody who is impacted to the degree that Dillan is who wouldn’t give anything to just be able to sit and talk, to have their body sit still, to be able to reach for what they want and consistently get it.

But their minds are really unique. What would happen if we spoke to them in an age-appropriate way from the minute they are diagnosed? I can only imagine how differently Dillan would have felt if we had done that.

Dillan has described autism as a prison. How do you feel about that?

It’s tough to think about how they must feel. ‘Not only am I autistic, not only can I not talk, not only is my body uncooperative, not only do I get stressed out really easily. But you all think I don’t understand you, and you talk to me like I don’t understand you, and you talk about me (in front of me) like I can’t hear you.’ I can only imagine how painful that must be.

How do you feel, looking forward?

Dillan has come to a place where there’s hope for his future. There’s a lot of work still to do. We’re just at the bottom of this mountain, but I feel happy that we got to the mountain, and it’s really exciting. We can see a mountain to climb. We have hopes and goals.

I want to help other people see that there are mountains too for their kids to climb. A lot of great things have been happening recently, and Dillan feels like ‘Wow, I guess I can have hope for my own life, and I can maybe make a difference for other people too.’ That’s exciting.

For  more information, please visit Dillan’s blog, Typing 4 Change.

Dillan's Voice

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