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 A Must Read!
by Ken Moses, Ph.D.
The Impact of Childhood Disability: The Parent's Struggle
Excerpts from Dr. Moses' article "...
As disability bluntly shatters the dreams, parents face a complicated,
draining, challenging, frightening, and consuming task. They must raise the
child they have, while letting go of the child they dreamed of. They must go
on with their lives, cope with their child as he or she is now, let go of
the lost dreams, and generate new dreams. To do all this, the parent must
experience the process of grieving. ... The culturally rejected
feeling states of denial, anxiety, fear. depression, guilt, and anger may be
used in surprisingly positive ways when the feelings are fully shared. ...
experiencing and sharing the pain is the solution, not the problem. ..."
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 | California Department of
Developmental Services (DDS) DDS is the agency through which the
State of California provides services and supports to children and adults with
developmental disabilities.
http://www.dds.ca.gov/index.cfm
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| Easter Seals Northern California
According to the American Academy of Pediatrics, recent studies on early child
development have proven that a child's brain structure is influenced
significantly by environment and experiences during the first few years of
life. Easter Seals Children's Services — from infant monitoring programs to
recognize developmental delays, to full-day child care — help children of all
abilities work toward developmental goals at the time in their lives when they
are most ready to learn.
http://www.esncal.org/index.htm
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| Golden Gate Regional Center
Golden Gate Regional Centers (GGRC) are the hub of a comprehensive network
which links people to services, acts as a community focus for individuals with
developmental disabilities, their families and service providers. We are
your partners in lifelong support.
http://www.ggrc.com
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Lissencephaly Launch
Pad Lissencephaly encompasses a range of severe development
disorders (including Polymicrogyria) that cause the brain to misdevelop during
pregnancy. This page contains a whole load of links that are either directly
about Lissencephaly or have some relevance.
http://homepage.ntlworld.com/foliot/liss/
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Matrix Parent
Network and Resource Center A local marin county organization
"Unlocking the power within families to reach for their dreams... Supporting
families of children with special needs..."
http://www.matrixparents.org
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Neurology Webforums at Massachusetts General Hospital This
webforum is a continuing effort by the Department of Neurology at
Massachusetts General Hospital to foster online discussions between patients,
caregivers and physicians about various Neurology-related topics.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi
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Lissencephaly
Network Home Page This web site is provided for the parents,
siblings, physicians and therapists of children born with lissencephaly
(smooth brain), and other neuronal migration disorders. Browse this site for
information on lissencephaly, advice on dealing with the many issues that will
become commonplace in your life, and stories from parents and siblings on the
lissencephaly experience.
http://www.lissencephaly.org
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PMG
eGroup This listserv at Yahoo Groups was established as a place to share
medical information and emotional support. The group is made up of parents and
relatives of children with PMG, not medical professionals. If you have a child
or a relative diagnosed with Polymicrogyria (or a similar neuronal migration
disorder) and are looking for information and support, please feel free to
join this community.
http://groups.yahoo.com/group/polymicrogyria
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PubMed is the National
Library of Medicine's search service that provides access to over 10 million
citations in MEDLINE, PreMEDLINE, and other related databases, with links to
participating online journals.
http://www.ncbi.nlm.nih.gov/entrez/
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Rights Under the Lanterman Act ~ The Lanterman Developmental Disabilities
Act ("Lanterman Act" or "the Act") is the law that gives people with
developmental disabilities in California the right to services and supports
that will allow them to live a more independent and normal life. The Lanterman
Act begins with section 4500 and runs through section 4846 of the California
Welfare and Institutions Code.. The services and supports must meet both the
needs and the choices of each person individually. §§ 4501, 4512(b). |
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a
special girl born with Polymicrogyria (PMG)