"The key to acceptance is a willingness to be present with Jake, to join Jake on his terms."

About: Jake (14)

Age Range: 14 to 21 years

Perspective: Parent

County: Putnam


 

There are lots of approaches or stances we could adapt toward Jake’s disability; we could...

  • Refuse to admit that he is any different from a typical child
  • Blame Jake’s behaviors on his immaturity or laziness or stubbornness;
  • Wage war against his disability and try to cure or eradicate it;
  • Get angry at Jake for not being able to behave or function as his peers;
  • Get angry at God for striking our son with this affliction;
  • Get angry at the medical community for not preventing and perhaps for causing his disability;
  • Resent typical children for making the distinctions between Jake and them so visible and pronounced;
  • Isolate Jake and our family from others;
  • Aggressively immerse Jake in every type of social interaction and function;
  • Wallow in self-pity because no families, no parents know what we go through;

And there are dozens of other complicated reactions any parents might have when their seemingly typical child develops autistic behaviors.

The most important breakthrough we’ve had with Jake involves our own theoretical approach to him and his disability, our own attitudes. We’ve learned how to accept Jake. Acceptance is a complicated concept. To accept means that it’s okay if Jake never improves; we accept him. It means that if he regresses or develops behaviors that are more “inappropriate” than the ones he has now, we accept him. We accept not just Jake’s typical, normal characteristics, but also his autistic characteristics. To accept means not to judge him by some fantasy version of Jake that we’ve constructed (football star, class president, being just like his cousin, going to med school, etc.). To accept means not to judge him at all, not to evaluate. To accept. And we accept Jake.

It’s easy to claim that we accept Jake. He brings us much joy, and he adds so much to our lives. Our son is capable of great affection and love. We hold hands when we walk him into school or across a street, and his hand-holding is tender, gentle, meaningful. When one of us comes home from work, he gleefully sprints and embraces, saying, “Daddy’s home” or “Mama’s home.” He kisses his little sister goodnight. When one of us puts him to bed, he cuddles and snuggles; he doesn’t sleep without affection. His favorite way to wake up is with hugs, kisses, and tickles. Sometimes Jake sits next to one of us and pats us, saying, “Mama” or “Daddy.” Sometimes he’ll take our hands, bring us close together, and say, “Mama and Daddy kiss,” watching with a giant smile as we kiss. On such occasions, it’s very easy to accept Jake.

The key to acceptance is a willingness to be present with Jake, to join Jake on his terms. Accepting him means to want to join him for no other purpose but to be with him. And this isn’t always easy. Jake is often self-contained. He can entertain himself for hours with a favorite DVD or book or website or toy or activity. We might be with him but rather be doing something else or rather he would do something else. Perhaps we have other things we need to do besides watching a roller coaster DVD with Jake (both of us are always looking for more time to work, read, do laundry, talk on the phone, nap). Perhaps we’d rather Jake would do something else (how many times can a person walk forwards and backwards under a garden trellis?). We might be distracted when we play with Jake (I have so much to read, the lawn really needs mowing, I wonder why he hit three kids today, will he ever be able to tell me what he’s thinking or how his day was?). It’s very easy to play with him or be near him without really being with him.

To accept Jake (and probably to accept any kid, really) is to be present with him. Be with him in the moment, in his game, alongside him, from his point of view, in his shoes, on his level, without performing for him or for onlookers, unselfconsciously, take the time to join him. Join him. Really join him. We have so many hang-ups about our own lives and what we could otherwise be doing, about how we appear in others’ eyes, about what we’re supposed to be doing, that we sometimes have difficulty joining Jake. And when we miss a chance to join him, we miss out. We miss a chance to learn about him. We fail to accept him, and we fail him.

 

Updated on Wednesday, March 28, 2012