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Auditory Neuropathy Information

How can the professional be more supportive of parents?

I made this list of tips for professionals based on my personal experiences with various people involved in Jake's case, as well as things that I wished had happened for us. It is not meant to point fingers or blame, just to provide insight to professionals about what families want and need.
How to help us help our children:

Remember that parents know their children better than anyone does. Listen to them! If they feel there is a problem, there usually is.

Be prepared to provide emotional support. It is a shock to actually hear the diagnosis, even if the parent already suspected hearing loss.

Remember that parents view the diagnosis as a loss, much like a death. Allow them to grieve and be aware they may seem angry and lash out at you.

Provide them with easy to understand information about the diagnosis.

Realize that they may not recall what you told them initially. Due to their emotional state, written information may be more beneficial. Encourage them to ask questions when they are ready.

Follow-up calls from professionals are nice and show that you care.

Realize that parents only want what is best for their children, which is why they ask so many questions.

Provide sources of information on all communication choices and available intervention services in your area.

Direct them to other families, support groups, Internet email loops, and websites dealing with the diagnosis.

Be open and honest if a question is outside your knowledge base. You should be willing to research the issue, to seek out help from other professionals, to attend workshops and conferences, to find the answers, and get back to them. It's okay to say, "I don't know the answer, but I will find out." Nobody has all the answers!

Inform parents of conferences, seminars, camps or workshops that may be beneficial to them.

Respect the needs and special circumstances of each family. Don't admonish or make them feel guilty for needing time for themselves and their other children.

Be a team player! Effective working relationships between all members of the educational team and the family is imperative to the child's future.

Never discount odd occurrences as denial of the diagnosis. -If the parent of an auditory neuropathy child tells you that the child seems to hear sometimes, believe them, it happens.

Stay current in your field.

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Copyright 2000, 2001 Elaine Blackford All Rights Reserved