What’s in a diagnosis?

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matrixlogoCross-posted with permission from our friends at Matrix Parent Network and Resource Center. Matrix is a Regional Parent Technical Assistance Center and a Parent Training and Information Center in California serving families of children with disabilities, their teachers, and other professionals throughout the northern San Francisco Bay Area. Visit Matrix’s website at http://www.matrixparents.org/ to access free publications, training opportunities, and other resources, and be sure to check out their blog at http://matrixparents.wordpress.com.

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Getting a diagnosis that your child has a disability comes with a range feelings, but know that you are not alone in this journey. Teachers can serve as professional partners to help parents through the difficult process of entering the world of disability. And since teachers spend a significant portion of their day with your child, having them as partners can be of great benefit and support to both parents and their children. It was a teacher who in fact prompted me to seek a diagnosis for my daughter. The signs had been there, but her genuine concern made me take action.

How might the diagnosis journey begin?

In preschool, my daughter was the only one who couldn’t sit in circle time without rolling all over the floor. Riding tricycles with her classmates in a big indoor playroom, she was the only one who said she could hear chairs moving across the floor in the room above.

But it wasn’t until three years later that her first-grade teacher gently pulled me aside, looked me right in the eye, and said she was concerned. She advised me to get an assessment.

It was the prompting of a concerned teacher that let me know that my daughter needed to be diagnosed and her needs better understood. I knew that it was time to move beyond the words and phrases used to describe her (“fidgety,” “sensitive,” “unfocused”) and get something formal.

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Pros and Cons of Diagnosis.

Why did moving beyond words that described her behavior matter? Does a label or diagnosis matter? As parents helping many other parents over the years at Matrix, we have discovered the following about what’s in a diagnosis:

There can be positives:

• A feeling of relief
• Connection to doctors and professionals who specialize in that diagnosis
• Ability to focus services and interventions
• Family and friends can become more understanding
• Insurance may pay for services
• Clarity for an older child who may wonder, “What is wrong with me?”
• Chance to find other parents dealing with the same diagnosis
• Connections to organizations that specialize in information, help, and support

There can be negatives:

• Many emotions: worry, fear, grief, embarrassment, denial
• Your child now has a “pre-existing condition”
• Realizing your assumptions about the future — or your child’s potential — may be incorrect
• Isolation from family and friends
• Finding out about stigmas attached to the diagnosis
• Your child may be pigeonholed into a program by a label/diagnosis without consideration of needs

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You have a diagnosis, now what?

When a diagnosis comes early in a child’s life, either at birth or shortly thereafter, it can bring overload at a tender time. Alyssa DiFilippo, our Parent Advisor – Early Years, has written a moving essay about learning and accepting a diagnosis in the most recent Early Edition, our publication for parents of children birth through 3.

Whatever your feelings about seeking or receiving a diagnosis for your child, remember that your local Parent Training and Information center is available for you, providing referrals, advice, or emotional support.

The Matrix website also includes information packets about a variety of diagnoses, including AD/HD, Autism Spectrum Disorder, and speech and language disorders.

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NOTICE: The National Dissemination Center for Children with Disabilities (NICHCY) is no longer in operation. Our funding from the U.S. Department of Education’s Office of Special Education Programs (OSEP) ended on September 30, 2013. Our website and all its free resources will remain available until September 30, 2014.