What to do once you have a diagnosis

Once your child has been diagnosed with a special need, you are obviously flooded with emotions – and questions.

Sara Anderson and Anne Powers of the Erickson Institute were part of a panel discussion at the recent Neighborhood Parents Network’s Developmental Differences Resource Fair  They discussed what to do once your child has a diagnosis, and what kind of services might be available to help them.

Anderson says everyone responds differently after a diagnosis is made and any reaction is appropriate; common reactions range from relief to surprise, worry and fear.

“You might worry about what your child’s needs will be and what it will mean for the future,” she says. “It will change your perspective about everything.”

She says it is something that will impact the entire family, and different family members will have unique reactions. But it’s important to talk to family members about the diagnosis, what the child’s needs and family’s needs will be, and acknowledge their feelings and provide each other with support.

“It’s also important to connect with friends who can support you and you can vent with,” she says. “It’s also important to meet other parents who are going on the same journey you are.”

Remember to do things for yourself and take care of your own feelings and needs.

Once you have begun to process your emotions and your needs, it’s important to realize you are your child’s advocate and need to be aware of their legal rights. Make sure you have everything in writing and stay organized with all the paperwork, she says.

Powers says once you get your child’s assessment report, you should read it and check it for accuracy. Make sure you write down your thoughts about it, and if necessary, call the assessment team coordinator to discuss any questions or concerns you might have. The document can usually be modified or an addendum can be added so your feelings can be addressed, she says.

The assessment report might recommend specific therapies. There are a wide array of therapies usually available so it is important to make sure you understand all of the options.

Anderson says it is important to remember that you know your child the best and know what expectations are realistic for your family and your needs.

“You are in the driver’s seat,” she says. Ask questions about where the therapy is located, how often it is offered, if it’s for a set amount of time or an ongoing therapy, and whether it is covered by insurance.

“It’s important for you to understand and make an informed decision,” she says.

Other questions might include what the philosophy of the therapy is: is it a play-based therapy, a relationship-based therapy or even a behavior-based therapy? It’s also important to understand what the expectations are for you as the caregiver, including whether you are expected to attend therapy and whether it is during school or after school hours.

It is also important to prepare your child. Try to describe as much as possible what the therapy will be like.

“Remember, it is a process and not a product,” Anderson says. “Things will change, progress and regress. There are different challenges and successes along the development journey.”

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