PARENTING "Quirky" KIDS

W hen Dr. Eileen Costello was in medical school she was trained to treat and diagnose many things, but when another child walked into her busy Boston pediatric practice wearing a weighted therapy vest, she knew she had entered unfamiliar territory.

WSomething was shifting and Costello knew it was time to listen, research, and figure it out.

Thus, began the groundwork for her acclaimed book with co-author and colleague, Dr. Perri Klass, called Quirky Kids, Understanding and Helping Your Child Who Doesn't Fit In- When to Worry and When Not to Worry.

Dr. Costello and Dr. Klass coined the term "quirky kids" to describe the children they were encountering who didn't quite fit in. A child who often had developmental differences, temperamental extremes, and social difficulties on a wide spectrum ranging from mild to severe, but who were also frequently bright, charming, and creative.

Decades ago these kids would have been termed "odd" or "eccentric" but never given a formal diagnosis.

Parents of quirky kids often notice something is amiss early on in their child's development yet when they voice concerns to their child's pediatrician, they may be told that their child is "normal" or "going through a phase" leaving them wondering, if their child really does need help.

ballantine books Frequently, parents of quirky kids complain pediatricians are not in touch with their child's unique situation.

Kathy Paquette of Framingham will never forget the years of struggle before her now 11-year-old son Billy was diagnosed with Asperger's syndrome.

"Our original pediatrician told us Billy was a 'difficult child.' He told us to accept this, gave us a book, and told us to parent him accordingly. After many tears of frustration we found a sensitive pediatrician who took Billy into her caseload and immediately got us an appointment with a neurologist who then got us into Early Intervention."

Another parent, Bonnie Gibb of Chelmsford, and her 4- year-old daughter Rebekah, who has developmental delays, said, "Make sure your pediatrician is on your team, if he/she isn't concerned when your child isn't meeting milestones, find someone who is."

Evaluations are a first step in this process and can be done through a child's school. If a child is between birth and age 3, Early Intervention services are available in Massachusetts to help assist parents. So when is the best time to evaluate a child?

"Earlier is better, as early as the first year of life, especially if there are concerns in more than one area of development," said Dr. Costello.

Key things to look for are concerns surrounding:
• Speech and language
• Behavior/social skills
• Motor delays/motor planning difficulties.
"If your child states, 'I can't do that,' it may mean, 'I can't plan that out' as their bodies can't carry through what they plan in their heads," Dr. Costello said.

For quirky kids who are struggling, but not given the appropriate help early on, life can prove difficult and lonely often leading to anxiety and depression. Parents can suffer too.

Someone once said to Dr. Costello, "you can only be as happy as your saddest child," which rings true for every parent, especially those of quirky kids. This is why intervention is crucial for a good outcome.

Parents find that a diagnosis is key, as it directs them toward information, resources, support, and therapies that can make a difference.

Michele Frye of Natick, mom to 2 1/2-year-old Maddie, is at the beginning of the process. "Right now, the most diffi cult part of our situation is the lack of a firm diagnosis. It's hard to see your child struggling, when it is clear something is wrong, and no one can explain why."

Gibb echoed that. "Rebekah currently is diagnosed with developmental delays, but has no other formal diagnosis and it's been difficult not knowing the cause of her delays. We continue searching for answers and just seem to come up with more questions."

Most of the diagnoses quirky kids receive are relatively new and still evolving ones. Sometimes the training of the evaluator will influence the diagnosis a child receives. Expertise is often limited and there is frequent overlap and comorbidity with other disorders such as attention deficit disorder, tic disorders, Tourette's syndrome, anxiety disorders, obsessive compulsive disorder, depression, oppositional defiant disorder, phobias, and the list goes on.

Paquette said it took years to get a formal diagnosis for Billy.

"It was a long slow process of tests, specialists, appointments all the time, eventually a couple of years later we got an official diagnosis."

When diagnoses are made, parents can be terrified of some of the terminology. Parents experience feelings of grief, depression or resistance, as it wasn't what they had envisioned for themselves or their child.

Parental involvement with a quirky kid is often more intense and prolonged than with a normally developing child, so that can bring stress to the entire family.

Often parents re-grieve with each chapter of the child's life or feel frustrated and depressed when a diagnosis is changed or added.

"When I see typical children his age, I mourn for the child Billy should have been. He should be able to play sports, read, have friends, and enjoy life like others his age. These feelings do get better as time passes but do rear themselves unexpectedly," said Paquette.

Ultimately parents are usually relieved to finally have a name for what they've noticed for years. Many parents become experts and advocates for their kids.

"When you don't feel like you are getting the necessary answers, keep looking and keep pushing. You may not feel comfortable asking the doctors tough questions, but you need to remember that you are your child's advocate and they need your help" Frye said.

Once diagnosed, therapies are especially helpful for children from birth to age 3, but can be expensive and time consuming. Dr. Costello suggested picking one or two things that are the greatest struggle areas for your child and focus on those.

She warned that every moment of every day shouldn't be considered a "therapy opportunity," as all kids need a childhood with free time. It's important to remember it is fine if your child wants to lie on the floor and do nothing while you cook dinner.

Despite their quirkiness they're still kids and taking time to slow down and enjoy simple, everyday moments is important for kids and parents alike, she concluded.

Laura Richards is a freelance writer and mom from Framingham.

About the Book:

Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit It - When to Worry and When Not To Worry (Random House, paperback, 400 pages, $14.95)

"From the fourth-grade girl who never gets invited to a birthday party because classmates think she's "weird" to the geek who is terrific at math but is failing every other subject, quirky children are different from other kids in ways that they- and their parents- have a hard time understanding. They present a host of challenges that standard parenting books fail to address. Quirky Kids by seasoned pediatricians Perri Klass and Eileen Costello provide the expert guidance that families with quirky children so desperately need. Klass and Costello illuminate the confusing list of terms often applied to quirky children - from Asperger's syndrome and nonverbal learning disability to obsessivecompulsive behavior and sensory integration dysfunction. The authors also discuss various therapy options, coping strategies, and available medications. Most of all, they will help quirky kids lead rich, fulfilling lives at home, at school, even on the playground."

About The Authors:

"Perri Klass, M.D., and Eileen Costello, M.D., are pediatricians on the staff of Boston University School of Medicine. Both Harvard graduates who trained in pediatrics at Boston Medical Center and Boston Children's Hospital, they have practiced pediatrics together at Dorchester House, a community health center in Boston, for 10 years. Klass writes frequently for The New York Times, and is a contributing editor at Parenting. She has written both fiction and nonfiction, including the novel Other Women's Children and the memoir Baby Doctor: A Pediatrician's Training. Each is the mother of three children, and they both make their homes in the Boston area."

Red Flags To Watch For During Your Child's Development

• No babbling by 12 months
• No gesturing by 12 months
(waving 'bye bye' or pointing)
• Any loss of language or social skills
• Lack of response to speech or name
• Poor eye contact
• Poor symbolic play (capacity to substi
tute one object for another)

Resources Books:

• Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In - When to Worry and When Not to Worry by Perri Klass and Eileen Costello

• It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success by Richard Lavoie

• Helping the Child Who Doesn't Fit In by Stephen Nowicki and Marshall Duke

• The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

• Raise Your Child's Social IQ: Stepping Stones to People Skills for Kids by Cathi Cohen

• Raising a Sensory Smart Child: The

Definitive Handbook for Helping Your Child

with Sensory Integration Issues by Lindsey

Biel and Nancy Peske

• A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive by Sally Ozonoff and Geraldine Dawson

Resources In Person & Online

• Early Intervention Programs:
www.massfamilyties.org
• Social Smart Kids:
www.socialsmartkids.com

• Executive Office of Health and Human Services Department For The Commonwealth of Massachusetts, One Ashburton Place, 11th Floor Boston, MA 02108, 617-573-1600, www.mass.gov

• Asperger's Association of New England, 85 Main Street, Suite 101 Watertown, 02472, 617-393-3824, www.aane.org