"What's Wrong With Me?"

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When Brandon Kaplan-Fink was around 11 years old, he figured out on his own that he had Asperger syndrome. Though he had been diagnosed at age 7, no one had ever discussed the facts with him.

5 Tips on How to Tell Your Child

  1. Use people-first language: Put your child first, not the disability.
  2. Look for signs of emotional readiness: Is your child asking questions?
  3. Listen carefully to his questions and answer them directly.
  4. Emphasize your child’s unique abilities and strengths.
  5. Turn over some advocacy responsibilities to your teen while she still has a safety net, so she can learn from her mistakes.

“I heard people at school saying that I had something,” recalls Brandon, now 19 and living with his family in Huntingdon Valley, PA. “They saw I was totally obsessive, talking about the same things over and over.” The chatter spurred him to start researching what made him so seemingly different from — and ostracized by — his peers.

“He was looking things up on the Internet and one day came to me and said, ‘I have this,’ ” recalls his mom, Lynn.

“I wasn’t going to tell him anything, because I didn’t want him to be labeled or made self-conscious. I never wanted him to feel different, but unfortunately he did.” When Brandon confronted her as a tween, she confirmed his findings.

Conversely, Nelson Montanez of Bensalem, PA, whose 4-year-old has autism, is setting the stage for discussing his son’s diagnosis — not shushing conversations about it — in order to broaden his child’s perspective. “My son is going to be aware as he grows up that he has a diagnosis,” states Montanez. “I would like to be up-front with him and teach him: This is not who you are but a part of who you are.”

Discussing a diagnosis

A special needs diagnosis can be overwhelming and frightening to parents, explains Mary J. Pagel, LBS, a family therapist who works with the Autism Cares Foundation in Richboro, PA. “You had a dream and now you are going to see your child struggle to learn.”

“A diagnosis means something other than what parents were expecting,” says Alexandra Ranieri-Deniken, PsyD, of SPIN Behavioral and Developmental Services in Philadelphia. “We must allow parents to grieve their loss of the perfect child.”

Though parents may want to shield a child from a difficult diagnosis, the way Lynn Kaplan-Fink did, experts agree that this tactic can backfire, leading to feelings of betrayal. Instead, an open discussion that presents the facts in a gentle way empowers and prepares the child to self-advocate.

Recently, when an 11-year-old learned about his autism diagnosis through a coordinated discussion with his parents and psychologists, he simply said, “ ‘Yeah, that makes sense,’ ” reports Dr. Ranieri-Deniken, who explains that the boy’s parents were also relieved. It didn’t change who the child was, and he finally understood the reason for some of his struggles and behaviors.

“A child’s diagnosis is really an explanation for something that he has not been able to put his finger on for a long time, which can be a very relieving, therapeutic experience for the family,” explains Todd Koser, PsyD, also of SPIN.

Next page: When is your child ready to understand a diagnosis?

 

When is your child ready?

Discussing a diagnosis is a highly individualized conversation that must take into account each child’s developmental stage and ability to understand. Jill Parmenter, a speech therapist from EBS Healthcare in West Chester, PA, says that when children begin to ask questions about their situation, they signal their readiness to start processing news about their particular diagnosis.

“Listen to what your child is actually asking you,” Dr. Koser advises. He encourages parents to answer those questions directly and appropriately for their child’s age and comprehension ability. “For teenagers, I often talk to them about understanding their main triggers or sensory issues and then [why it’s important] to be able to self-advocate, to explain to other people what they need and why,” says Dr. Ranieri-Deniken.

Numerous experts believe that children benefit from understanding their diagnosis and learning about the roots of their differences: “Only if parents accept their child’s diagnosis and can discuss it in a loving way are they truly able to help this child grow in self-esteem and self-acceptance,” explains Pagel. 

Supportive parenting and advocacy

Many experts believe that parents should prepare their child’s care team before any visits or encounters. For example, Dr. Koser suggests that when scheduling appointments with professionals, parents need to reach out and request accommodations and offer some solutions for possible conflicts.

Some relatives and friends who have little experience in this realm may become concerned by a child’s quirks or tantrums. Eventually, Lynn Kaplan-Fink had to meet with family and friends to educate them about her son’s diagnosis, what to expect and how they should respond.

Over the years, Linda and Frank Kuepper taught their nonverbal son, Michael, to communicate using phrases, sign language and an iPad. “If you are not familiar with how Michael communicates, then you are pretty much lost,” explains Linda, cofounder of the Autism Cares Foundation. She has shown relatives and friends how to reach Michael and, more importantly, how to treat him with love and compassion.

Numerous experts believe that children benefit from understanding their diagnosis and learning about the roots of their differences: “Only if a parent accepts their child’s diagnosis and can discuss it in a loving way are they truly able to help this child grow in self-esteem and self-acceptance,” explains Pagel. 

Lynda Dell is a freelance writer who is an experienced PA-certified early childhood educator.

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