A Family Faces Autism

a family faces autism         3.11.12

The early days

TJ and Peter a few months after the diagnosis. TJ's holding cards that helped him communicate because he couldn’t talk yet.

Lauren started to notice things when her son was about 2 years old. She and TJ were regulars at a playgroup of kids born around the same time. This allowed the moms to compare notes as the kids started to sit up, crawl, and walk. “It was so interesting, just to see all the different kinds of development taking place,” says Lauren. “And TJ was right along with them.”

And then his path started to diverge. He would start crying in the middle of playgroup for no reason. Sometimes the cries escalated into screams and Lauren had to scoop him up and get them both home. Then the other kids started forming words, but no words came for TJ “And that’s how I first noticed that he was different and how something might be wrong. That’s how it started for us.”

Period of adjustment
TJ was 2 years, 3 months old when he was diagnosed with autism. He’s now 11 and Lauren speaks with full candor about her family’s experience. When I ask if it’s okay to use her and TJ’s real names, she answers yes immediately. “I’ve always felt if you’re shy about it, there’s something to be ashamed about, and we have nothing to be ashamed about,” she says. Even so, talking about the early days still brings her to tears. She says she can talk about it, believes that it’s good for her to talk about the period she describes as the hardest time of her whole life, but the old pain comes up every time.

Among many other things, autism forced Lauren to take stock of her expectations as a mother. She learned to resist the urge to envision her children’s futures. (TJ has a younger brother, Peter.) Autism put a question mark next to nearly everything. She didn’t know if TJ would ever talk, never mind if he would go to college or what he would major in. As she describes it, “The biggest and most immediate lesson was, how dare I envision any sort of future at all for my kids? It’s up to them to tell me what they want their futures to be.”

Open to almost anything
From very early on, Lauren and her husband approached TJ’s autism with an attitude of, ‘let’s try it.’ They exposed TJ to as many types of therapy as possible to see what worked, and as many situations as possible to see what made him uncomfortable. Each time they learned something about their son, they could make their next move.

Like a lot of kids with autism, TJ had trouble with social situations so Lauren brought him back to playgroup not long after his diagnosis. At first he kept to himself, and Lauren was fine with that. “I kept saying, as long as he’s in the room, and not in a different room in a corner, that’s okay.” When the other kids got too loud, Lauren and TJ would go into another room for a break, and then return to the group.

Playgroup slowed down as TJ got more services. At one point, he got 20 hours a week of services at the house. Early on, the teachers would have him do things like identify colors on a set of cards. Over time the drills got more challenging. The drills would last for 20 minutes and then he got a chance to play and unwind for a couple of minutes, then on to the next drill.

The hours of early intervention seem to have paid off: TJ is in sixth grade now, fully verbal, and contrary to Lauren’s fears, has been able to connect with other kids. Still, it’s work for him to be there. “He works really hard, he holds it together at school, and then when he comes home, he lets it all hang out,” says Lauren.

An expert in TJ
I can’t help but tell Lauren she’s an expert in autism, and it turns out I’m not the first person to say so. She quickly corrects me: She’s an expert in TJ. Autism plays out differently for every kid. For her part, Lauren knows what TJ struggles with, and what he’s good at. Every kid is good at something, but kids with autism tend to be really good at the things they’re good at. For TJ, one of these things is art—he can look at a picture once and draw it. Or he’ll picture his dream house and start to draw that. Other kids ask him how he learned to draw so well and he’ll say, “I don’t know. I guess I’m just a really good artist.”

As the expert in TJ’s autism, Lauren has also learned when to let him zone out, and when to draw him back. After watching a show once, he can replay the show in his head. If he’s had a hard day at school, Lauren lets him watch a show in his head for a while, but pretty soon she’ll say, “Okay TJ, out of your head. Come talk to us,” and draw him back into the room. This is her role. Lauren provides comfort and safety, while also tugging at him, always pushing him just a little further than he wants to go, teaching him coping mechanisms along the way.

More than just autism
Besides autism, TJ also has anxiety, which is the case for a lot of high-functioning children with autism. Researchers think that knowing they’re on the outside of social circles and feeling helpless to do anything about it gives rise to anxiety. And in one those grim jokes of nature, anxiety can turn around and make a child even more socially awkward. More about anxiety in children with autism.

That said, Lauren and Sean have become masters of planning ahead to mitigate both the autism and the anxiety. Before any outing they try to anticipate what might go wrong and come up with a game plan. For instance, the sound of the buzzer at Peter’s basketball games used to startle and upset TJ so they taught him to watch the clock and predict when the timer was about to go off so he knew when to cover his ears.

Autism is not who you are, but part of who you are
Lauren and I are Facebook friends and her posts are often funny, touching, and/or heartbreaking. In one she quotes Peter, her youngest asking, “Mom, can I have extra Wii time? It’s really hard having a brother with autism.” In another on the last day of winter break, TJ tells her that having autism makes it hard for him to go back to school, which prompts this post, “It’s official – BOTH my boys have played the autism card.” Then the following evening, after his first day back, TJ declares, “I have autism,” and starts bawling.

TJ and Peter head back to school this past fall.

I revisit these posts after speaking with Lauren because our conversation leaves me feeling elated and optimistic. I need to remind myself that no matter how well she and Sean work to give their sons the best lives possible, and I think they are remarkable in this regard, the day-to-day experience of having autism in the family can be a long, hard slog. The autism doesn’t go away, no matter how well they manage it, and some days are inevitably better, or worse, than others.

When TJ tells her he wishes he didn’t have autism, Lauren tells him he might as well wish he didn’t have green eyes. “It’s not 100% who you are but it’s part of who you are” she tells him, “So let’s learn how to make that work for us.” When I ask her how she got to the point of being able to say that, she responds, “It’s slow. It’s being able to look backwards and see how far he’s come.“

Looking back
When TJ was first diagnosed, a teacher told Lauren to videotape him, because she would want to look back. “And I thought, I can’t even look forward. I’m terrified to think what is going to happen. I didn’t know if he was going to talk. I didn’t know if he’d be in a regular classroom. I didn’t know if I was going to have to get five jobs to support his therapies. I didn’t know. And that prospect of looking ahead was terrifying to me.”

But she listened and she did videotape TJ and now Lauren and Sean can look back at where they started, and realize how far all of them have come. Towards the end of our conversation, Lauren says of TJ, “I think he can do anything he wants to do. I think the world is his oyster. I don’t think he’s limited, I think he’s limitless. And he can have the most wonderful life he can have. But I couldn’t have said that 8 years ago.” I believe her on all counts.

About Joanne Barker

Joanne Barker is a healthcare writer and editor who lives in Somerville, MA.
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5 Responses to A Family Faces Autism

  1. Anne says:

    This article is beautifully written from a honest and helpful point of view. There is so much misinformation regarding Autisim. I have a cousin with Autisim and his brother lives without Autisim, they have a special bond. I have learned much from both of them through the years. Lauren is my oldest childhood friend with whom I am in touch with. She demonstrates a patience, understanding and real love for her son that reads loud and clear. It is obvious that both T.J. and Laren were brought together for gifts they give each other and share with their family and friends.

    • Joanne says:

      Dear Anne: Thank you so much for your comments. I agree with you about the amount of misinformation about autism. The myths and stereotypes have always galled me, but after talking to Lauren and getting a very real sense of what her family has gone through, I feel even more strongly about the kind of damage that misinformation can do. The good news is that we can help get some real information out there! All my best, Joanne

  2. Ginger Graham says:

    This is beautifully written. The reader can walk every step of the journey with TJ, Peter, Lauren and Sean. Exceptional parents-exceptional children. I’m blessed that TJ is my first born grandchild, and Lauren my gifted daughter. Best, Ginger

    • Joanne says:

      Dear Ginger: So nice to hear from you and I’m with you in the Lauren, Sean, TJ, Peter fan club. I am so moved by Lauren’s love for her children, and her clarity in dealing with the unexpected.
      All my best, Joanne

  3. Pingback: In Autism’s Shadow | barkerhealth.com

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