Helpful Resources


Below are some resources that I have found helpful:
SWAN (Syndromes Without A Name) is an organization that advocates for children and young adults who have syndromes without a name. They offer support, advice and information on the challenges that families face when there is no diagnosis. They also advocate for changes in the medical community that will benefit undiagnosed individuals.
Hopeful Parents is a community of parents who understand what it’s like to have a child with special needs.  It covers a multitude of topics such as the physical, emotional and psychological needs of both parents and children.  A great networking resources.
The Mighty is a resource for disability, chronic illness and mental illness.  It has over a thousand contributors that share their personal stories.
Complex Child E-Magazine is a free online magazine published monthly that features stories written by parents of children with a multitude of special and complex medical needs.
cleftAdvocate is a community that works to increase awareness and acceptance of congenital and acquired facial differences.  This site has a wealth of information and resources for individuals and families.
Special Olympics doesn’t really need an explanation because you’ve heard of it unless you’ve been living under a rock.  It is a great opportunity for children and adults with disabilities to be active in various sports.  Their site will help you locate opportunities in your community.  They also sponsor one of my favorite annual campaigns, “Spread the Word to End the Word.” and
Transitioning Angels is a blog by a mom of a child who is medically fragile and severely disabled.  It is about their journey as they face an uncertain future.