"We Battle Constantly Over Our Autistic Child"

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Her Turn, Continued

"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."

Continued on page 3:  His Turn

 

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