Homemade Hope
Raising a rare girl, In a prepackaged world
Special Needs Resources
(under construction: suggestions needed & welcome!)
Life as a special needs mom has felt like what I would imagine it feels like to have amnesia. Your in firmilliar places with people you have known all your life and yet it seems like you are in an entierly new world and you need to figure out how to relate to it all over again.
I have scoured the web at all hours locating and hunting down some great website and support pages that have been absolutly essential to me. Here is a list I have complied to help other parents who might need it as I know I did in the begining and still do.
They have an AMAZING list of resources !!
log in and search theese groups and pages:
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Pontocerrabellarhypoplasia (all types)
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Pontocerrabellar Hypoplasia parents and professionals
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CASK gene mutation
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Cerrabellar Hypoplasia support
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Mommies of miricles
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mommies of miRAREcles
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Stop descrimination against special needs
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Blenerized food for tubies
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A very special needs resource
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Support for kids with nurological disorders
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