Sunday, January 25, 2009

A Mother Knows When Something’s Just Not Right

Ignore the date, above. The following is an article I wrote for Professional Moms at Home.

When a child’s late talking, walking or crawling is a bit too late

by Melissa Stanton

When my son’s first birthday approached, and I was preparing to return to work, I typed a list of his words to give our nanny, in case she needed help with the translation. Right after my twin daughters’ first birthday, one girl started repeating, and remembering, every word we spoke. Her twin, however, said nothing.

At the girls’ 15-month check-up, I mentioned that daughter’s wordlessness to the doctor. She wasn’t particularly concerned.

At the girls’ 18-month check-up, I again mentioned that child's lack of speech. While my doctor was a little more concerned, she said she wouldn’t really worry about the unintelligible babbling until the twins’ second birthday. But if I didn’t want to wait, I could contact my county’s Infants & Toddlers program and ask to have my daughter assessed.

Within a few weeks a speech pathologist was at my house, asking me questions and putting my daughter through play-oriented tests. The speech pathologist determined that, yes, this twin had a speech-language delay and would qualify for free services. “I was right,” I thought to myself, smugly. “Good thing I didn’t listen to the doctor and wait.” She then explained that in order to receive county services, a child needs to be at least 25 percent behind in three or more areas of development. My daughter, I was informed, was behind in four. That, I didn’t expect. And that’s when I realized I was dealing with more than just a late talker.

Because my other two children developed on schedule, and in some areas ahead of schedule, I never considered the seriousness of being a late talker, or a late walker, or a non-crawler, or the myriad other developmental milestones on the checklist of babyhood. I had heard tales from other parents about kids who didn’t say a word until they were three or walk until 18 months but, one day, suddenly started speaking in complete sentences and sprinting through supermarket aisles.

By the tone of the speech pathologist’s voice, and the follow-up evaluation we had with her supervisor, I was soon made to understand that my daughter wasn’t simply a late-bloomer. At age 19 months, she was testing as a nine- to 12-month-old.

The county we lived in enrolled her in an Infants & Toddlers preschool, which met for 90 minutes three times a week. The class had four students and four teachers. The kids participated in group activities and one-on-one lessons. The moms generally stayed in the classroom, hidden from view behind a half wall. From the mothers I learned that their children were autistic. They asked if my child was as well. I explained that she was speech delayed, and was behind in social, cognitive and self-help skills, but she wasn’t autistic, at least I didn’t think she was. The program didn’t tell me she was. Was she?

When I asked the Infants & Toddlers folks, they responded that autism is a medical diagnosis, which as non-doctors they couldn’t make. The moms with autistic children, who were now
experts on autism, quizzed me about my child’s history and behavior. Their diagnosis was that she wasn’t autistic.

This “what if” lead me to seek out specialists. Since my daughter’s main problem was with understanding and using speech, the other mother's encouraged me to get her into private speech therapy. Since we live in Maryland, I was also directed to the Baltimore-based Kennedy Krieger Institute, which specializes in child developmental disorders and is affiliated with Johns Hopkins University.

More than three years later, my daughter is attending regular kindergarten classes at our public school. She meets with a speech therapist twice a week and every six months is seen by a developmental pediatrician. In terms of language comprehension and speech, she’s at least a full year behind for her age. Her twin, oddly, is more than a year ahead. So, developmentally, my fraternal twins are some two years apart in age.

Most every mother I’ve met with a special needs child says she knew, early on, that something wasn’t right with her child’s intellectual, physical or behavioral development. And most every one of these mothers said she was the one who had to point out the delay to her doctor, and insist that action be taken now rather than later. My experience and theirs has convinced me that mothers really do know best.

If You Think Your Child Has a Developmental Delay…

Tell your doctor about your concerns. Some pediatricians are so focused on the physical—treating illnesses, administering vaccines—that they don’t pay much attention to the less “medical” aspects of a child’s growth. How many words is your child saying? Does he understand commands? Does she make eye contact? Does he initiate play? The answers to such questions, all of which are included on standard assessment questionnaires, can help you and your doctor determine if your child is on track.

Contact your county, city or town’s Infants & Toddlers or Early Intervention program. A parent can usually contact these programs directly, with or without a physician’s referral, to request an assessment.

Consult with a specialist. Seek an evaluation with a expert, be it a developmental pediatrician, child psychologist, speech pathologist, occupational therapist, geneticist or audiologist. Most municipal health departments provide free audiology screening. Specialists can be found via your doctor, insurance company, the phone book, the Internet and other parents.

Consider medical testing. Some behavioral and developmental conditions can be diagnosed through genetic or diagnostic testing. Such testing typically involves a blood draw and lab tests. In some cases, an X-ray or MRI might be prescribed. Your doctor will need to order the specific tests.

Do your research. As upsetting as it can be to learn about conditions you’d rather not have to know about, bite the bullet and do some research on the Internet, at the library or in a bookstore. A book called The Late Talker (by Marilyn C. Agin, M.D., Lisa F. Geng and Malcolm J. Nicholl) helped me immensely in getting insurance coverage for my daughter’s speech therapy. The author spelled out which insurance codes and diagnoses are and aren’t covered. For instance, “developmental delay” is often used when a doctor isn’t sure of, or doesn’t want to make, a clear-cut diagnosis. The problem is, insurers claim that “developmental” problems will simply right themselves over time. (Without intervention, most won’t.) While a diagnosis of apraxia, autism or ADHD can be frightening, therapies for such conditions do qualify for coverage. It might be best for your doctor to make an educated guess. After therapy and monitoring, the diagnosis can be changed.

Talk to other moms. If you have concerns about your child’s development, seek out the help of mothers you know who are dealing with similar concerns, or have in the past. These women can be great resources, and sources of support.


Copyright 2008 Melissa Stanton
To be reprinted only with the written permission of Melissa Stanton or her authorized agent.


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