"Our world fell apart four years ago when Max, who's now 7, was diagnosed as autistic," said Randi, 40, a mother of two from Denver who quit her job as an urban planner when her elder child, Molly, was born nine years ago.
"The reality of that label is devastating. There's so much confusion and misinformation about this condition. Even people with access to good medical care, like us, hit one dead end after another. The stress is just unbelievable. Not only have Brett and I drifted apart, but we've also lost every ounce of joy we ever had. This is a man I've adored since I first laid eyes on him in my college cafeteria. Yet we can't even go to a movie anymore without fighting.
"I had a normal pregnancy and delivery with Max, and throughout his first year he hit all his developmental milestones at pretty much the same rate as his sister had. But around the time of his first birthday I just knew in my gut that something wasn't right. At 14 months our happy little guy started behaving strangely. He'd line up his action figures in a straight line and just stare at them, not moving, for half an hour. Or he'd stand behind a lattice-back chair and deliberately move his Matchbox car in and out of the lattice. If any part of the toy touched the chair, he'd have a horrible tantrum. We learned much later that he was self-stimulating — experts call it 'stimming' — which is when autistic children engage in repetitive behavior in order to release the sensory overload that's built up internally. But when it first started happening, I was upset and frightened.
"When I mentioned my fears to Brett, he dismissed them outright. In fact, for the longest time he told me I was neurotic. Brett is not a worrier by nature, which in theory is great, since I tend to be too intense. But it was maddening when he'd say, 'if he's different, he's different,' or 'he's a boy — everyone knows they develop later than girls.' Here I was, surfing the Web for any clue as to what might be wrong, and he was blithely telling me there was nothing to worry about. Once I was so infuriated at his indifference that I actually hit him on his arm. He shoved me right back and we both exploded in rage. I wasn't hurt but we were both shaken by that episode.
"It wasn't until Max's nursery school teacher suggested that we have him examined by a neuropsychiatrist that Brett finally conceded I might have a point. The teacher told us that Max had no interest in other kids and never looked anyone in the eye. He didn't play with toys in the typical developmental way, either. She explained, for instance, that boys usually drive a toy truck around on the floor and make truck sounds. Max, on the other hand, might shake the truck in the air. And she told us that making transitions, such as moving from free play to snack time, were ordeals for him — much more than for the other kids in his class."
"We got a referral from our pediatrician, who'd been insisting all along that Max was fine. After a battery of tests the specialist diagnosed Max with autism and warned us that there was no time to waste: Early intervention can mean the difference between a child who reaches his potential and one who remains isolated in his own universe. So we hit the ground running, immediately plunging into the endlessly agonizing process of making a million tough decisions. Which treatment is best? Should we start him in a playgroup or is one-on-one therapy preferable? What about his diet? My husband and I need to be able to discuss these matters, but most of the time I feel as though I'm married to a Cro-Magnon man. Brett either checks out, dismisses me, or talks louder and faster to drown me out. We can't even agree on whether to have Chinese takeout or pizza for dinner — let alone on Max's care.
"That care falls entirely to me, by the way. Brett is a management consultant who often travels on business. So when he's home he's exhausted. I understand that, but being with Max all day long is exhausting, too! I also resent the way Brett undermines my hard work. For instance, autistic kids can learn by watching television, but after two hours Max is heading for a major meltdown. That's why I strictly monitor his screen time. But if it's Saturday and Brett needs to get stuff done around the house, he'll let Max watch TV all morning. And of course I'm the one who pays for it when he acts out. Other times he'll dismiss Max's aide — there's one with him nearly all the time — so that he and Max can play. Again, he means well, but when Brett interferes with Max's schedule everything goes haywire. People who don't have a disabled child have a hard time understanding why this kind of spontaneity is taboo. But wouldn't you think Brett would get it? Sometimes I think he's still in denial.
"We also argue constantly about money, often in front of Molly. Insurance covers only a small part of Max's treatment, a type of therapy called Applied Behavioral Analysis. On any given day Max might see four people: a speech pathologist, an occupational therapist, a physical therapist and a teacher. Every minute of his day is structured. The goal is not just to teach him to read but also to impart basic skills: how to wash up before a meal, fold his clothes, or behave in a restaurant. This year we mainstreamed him into a regular kindergarten. When he gets home he has several more hours of speech, physical, and occupational therapy. Now Brett says we can't afford it and wants to cut back. So how come we can afford his expensive health club? Why are we hanging on to that little cabin in the mountains? Isn't our son more important?
"I grew up in the suburbs, the youngest of five kids. Ours was a big, active, high-energy household. I had so much fun with my siblings and always hoped that Molly and Max would have a similar relationship. But it's hard for her to have a brother who's so different from her friends' brothers. A few weeks ago she invited a friend to come with our family to a water park. When it was time to leave, Max flung himself on the ground and threw a terrible fit that one might see in a 2-year-old but — certainly not a 7-year-old. I could see Molly cringing in embarrassment. Recently we've had more frequent power struggles with her — clashes about bedtime or homework. It's pretty normal stuff, but I'm so sapped by Max's demands that I have no patience with her. It's bad enough Brett and I fight all the time. I don't want to fight with my daughter, too.
"Before we got married Brett and I made a pact that if either of us ever wanted to see a marriage counselor, the other would go along. That's probably the only thing we agree on right now."
"I can't talk to Randi anymore," said Brett, 41. "She does nothing but worry, every day, all day. When I try to reassure her, I get my head handed to me because she thinks I don't take her concerns seriously. Every conversation is like opening Pandora's box.
"I know Randi shoulders much of the burden for Max's care but it's not like I'm out on the golf course while she's killing herself. I'm working my tail off. I'd like to be able to take Max to his appointments, but if a client calls just as I'm leaving, I can't say, 'Sorry, I'll get back to you.' That client is paying me a lot of money so we can afford all this therapy in the first place. But Randi makes me feel guilty when I don't come.
"Right now we're spending between $35,000 and $40,000 a year on Max's care, and here in Colorado, health insurance covers very little of it. A playgroup with five other kids costs $60 an hour! I've read everything I can get my hands on about autism — if you're not on top of the legal and educational stuff, you'll go under. I'm scared to death that one day I'll run out of money and not be able to provide my son with the therapy he needs. Some days I feel as if I'm going to pass out from all the stress. That's why I want to weigh the options carefully and make absolutely sure that we're not just throwing money at some half-baked 'cure' that isn't going to help."
"Let's get something else straight: I was not dismissing Randi's concerns four years ago and I'm not doing it now. I just don't get as riled up as she does or worry myself sick about something that may not happen. It's true that when she first started saying that Max wasn't normal I was angry. What's 'normal'? Every kid develops at a different rate, boys later than girls. Comparing Max to Molly made no sense to me. Another reason I hung back was that I hate the idea of slapping a label on a kid. Once you do, everyone treats him differently and it's rarely nice.
"By the time Max was 2 1/2, though, he was so noticeably different from Molly that I knew Randi was right. The problem is, she and I approach things very differently. Is it so terrible to bend the rules a little and give the kid a break? Do you know what it's like to see your child screaming because he doesn't want to put the puzzle piece in the right hole? Max's therapy is like Marine boot camp: It's painful to watch. If he gets up from his seat, the aide picks him up and puts him back down over and over again. He looks like he's being tortured — which is why, if we just hang out together for four hours and don't say two words to each other, I don't care. I just want to be his dad.
"I grew up solidly middle-class. My parents ran a stationery store and were proud they could put my older brother and me through college. We never took fancy summer vacations but we did go camping every year. Our cabin in the mountains reminds me of those camping trips. I resent Randi's insinuation that I don't care about Max because I don't want to sell it. I feel a serenity there that I can't capture anywhere else on earth. That's why I joined a gym, too. Exercise keeps me sane. Randi used to understand that. Now we're on opposite sides of just about every issue.
"I worry about Molly, too. She's a terrific big sister but it's tough when you see your parents tearing into each other all the time and your brother getting most of the attention. It's hard to explain to a 9-year-old why she always has to let her brother have the last chocolate cookie just to keep the peace.
"Not that there's much peace to keep around our house these days. The Randi I fell in love with is smart and funny and wonderful to be with. Deep down I know we still love each other, but somewhere along the line we've lost that love."
The Counselor's Turn
"Even the strongest marriage can be torn asunder by the pressures of caring for a developmentally challenged child. Randi and Brett were smart and resilient, and before the crisis with Max arose they had a strong marriage. But they were operating on overload — physically and emotionally. As their son's needs burgeoned, so did their stress. The couple stopped listening to each other and became polarized, holding fast to their own opinions and refusing to give an inch. Conversation was replaced by criticism, name-calling, defensiveness, and blaming, which, to their horror, escalated on one occasion into physical violence.
"I spent several sessions with this couple talking about the stresses they both faced. 'Parents of children with disabilities need permission to have meltdowns, too,' I said. 'It doesn't mean you're bad parents. It means you're human.' One important step that the couple had skipped, in their frenzy to act quickly, was mourning the death of their dreams and expectations for their child. 'You need to allow yourselves to grieve,' I told them. 'And in time you'll find reasons to be hopeful.'
"Next, they both had to commit to dialing down the intensity of their anger. 'The second you sense you're beginning to lose your temper or are trying to force your viewpoint on the other, step out of the room. Get a drink of water, straighten the pillows — anything that breaks the cycle,' I suggested. 'When the atmosphere is relaxed and suffused with goodwill, it's easier to listen and think creatively about solutions.'
"We also instituted some rules of engagement, such as focusing on one issue at a time until it is resolved. I also asked them to pay attention to how often they use the word but. That word can be inflammatory when it prefaces every response to something the other partner says. 'The next time you are tempted to respond, "but…"' I advised, 'use "and" or better yet "at the same time." Believe it or not, this simple substitution is one of the quickest ways to convert a prickly conversation into a smooth one.'"
"At one session Brett complained that such rigid communication felt awkward. 'That's an excellent sign,' I replied. 'It means you're learning something new. As this speaking style begins to feel more natural, you'll find that the tension at home ebbs.'
"Equally important was the ability to listen for the deeper concerns behind each other's inflexible viewpoints.
"When people routinely dismiss each other, it can take a third party to point out an alternative so that neither spouse feels controlled. With time, energy, and me as a coach, Brett was able to explain in a way that Randi finally grasped how much he treasured the mountain cabin as a place to escape their high-pressured life. Similarly, she realized that the health club gave him a necessary physical outlet for tension: It was his way of coping, not of running away.
"As tempers eased, Brett and Randi were able to tap into the reservoir of love and humor that brought them together in the first place. Brett came to one session wearing a T-shirt Randi had bought for him that read, 'WHEN I WANT YOUR OPINION, I'LL TELL IT TO YOU.' This renewed ability to acknowledge their faults and laugh at each other signaled a positive turn in their marriage. Since they were fighting less, the power struggles with Molly eased, too. 'Kids become frightened when they hear their parents fight,' I noted. 'If you're calmer, she will be, too.' They also made a point of spending more one-on-one time with their daughter, which helped her better handle the situation.
"This fall Max will enter first grade at a new public school. 'He has made great strides,' Brett said, 'but we both accept that he is still severely disabled.'
"'No one knows what the future will bring, which milestones he'll hit, or if he'll ever be able to care for himself,' added Randi. 'But now Brett and I are on the same page. We're dealing with this together and we always will.'"
Originally published in Ladies' Home Journal, September 2006.