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Using Our Voices

A few months ago I became acquainted with an organization called “The Power of Moms. The organization’s mission is to help encourage what they refer to as “deliberate mothering.” In any case, I’ve found it to be a great resource, and truth be told, have become a little obsessed with it. But that’s a story for another day. . The organization also produces podcasts of which I’ve also become a fan. I recently listened to one which I think is a great one to pass along to parents of blind children. It is entitled, “Using Our Voices.” (Episode 45.)

In this podcast, one of the organization’s co-founders is interviewing a mother of a child with spinabiffita. The message of the program however is not really about caring for, or being a parent of a child with spinabiffita, but about how this mother learned to use her voice to advocate for the needs of her daughter. I strongly recommend that those of you reading this post as a parent of a blind child go and listen to this podcast.

Often I come across parents like this mother who don’t know or believe that they have a voice when it comes to advocating for the needs of their blind or low vision child. Many have experiences where they ignore their “gut” instincts as to what their child needs because they are intimidated by “the professionals” in both academic and medical realms. Others find their suggestions or beliefs as to what might be best for their child dismissed as “not a best practice” or “not deemed appropriate” for the child. For example, this past fall I completed and Orientation and Mobility assessment for a kindergartener. His parents strongly felt that he would benefit from using a cane and having more cane travel instruction than what he was presently receiving. (He saw his O and M instructor for a half hour a month despite the fact that he is documented as being legally blind and has a doctor’s report in his file stating that his vision is degenerative and expected to be completely gone within six months.). The parents were concerned because his vision was worsening and he was extremely fearful of traveling in unfamiliar areas. Unfortunately, the school administrators and his O and M professional did not see any reason for him to have a cane or to receive additional services because of the level of vision he presently displayed. Needless to say, these parents felt like they had no voice and continually saw their young child struggling. Their gut instinct was that things needed to change. Fortunately for them, they became connected with individuals who validated these feelings and helped them find their own voice for their child.

Our blind and low vision children have the same rights, opportunities, and potential as their sighted peers. They need only to be given the experiences and opportunities they need. I especially liked how this mother pointed this fact out in this podcast with respect to her own daughter’s potential. I think this is an important lesson for our parents of blind and low vision children to hear. Just because our children can’t see as well as other children does not make them inferior, unintelligent, or incapable.

I could spend hours sharing similar stories and write pages on how parents are the best advocates for their children. But, it all comes down to the fact that you have your child’s best interest at heart and you know your child and his needs better than anyone else. You and your child have rights. I think hearing this from another parent is one of the best ways to help convey this message. I hope you will check out this podcast and that it will inspire you to go out there and find your own voice when it comes to advocating for your child. WE need more parents of blind and low vision children out there to speak up for what is best for our children. Good luck!

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