The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos.
We do much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:
February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2017 ||2016 || 2015
May: Vascular – 2017 ||2016 || 2015
June: Orthopedic – 2017 || 2016 || 2015
July: Craniofacial – 2017 || 2016 || 2015
August: Infectious – 2017 || 2016 || 2015
September: Skin Conditions – 2017 || 2016 || 2015
October: Developmental – 2016 || 2015
November: Urogenital – 2016 || 2015
December: Sensory – 2016 || 2015
September is our month to focus on special needs involving the skin. And all month long, we’ll be featuring family stories of children with needs like albinism, congenital nevus, epidermolysis bullosa and ichthyosis.
Over the years, many family stories related to these special needs have been shared. And – during this month focusing on skin conditions – we wanted to take a moment to look back at just a few of our favorites.
Let’s go.
Albinism
Albinism: a group of inherited conditions – people with albinism have little or no pigment in their eyes, skin, or hair.
In this post from 2015, Lee Ann shares their fears in the unknowns of adopting a child with albinism and how that has changed since their daughter has been home.
Read more NHBO posts on this special need here.
Burns
Burns: injuries caused by exposure to heat or flame.
Jessica shares the story of bringing home their daughter, Cleo, whose special need was burns.
Read more NHBO posts on this special need here.
Congenital Nevus
Congenital Nevus: a congenital melanocytic nevus can sound like an overwhelming special need. Simply, it is a birthmark (nevus) present at birth (congenital) that is made up of melanin or pigmented cells (melancytic). A nevus is often described based on the size of the birthmark: small, large, or giant.
Michelle recounts the roller-coaster journey to bring home their daughter with a giant congenital nevus.
Read more NHBO posts on this special need here.
Epidermolysis Bullosa
Epidermolysis Bullosa: or EB, is a very rare genetic connective tissue disorder. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB.
Whitney confesses her initial fears on taking her daughter with EB to the beach, one of her family’s favorite pastimes, and that she maybe ought not have been so worried after all.
Read more NHBO posts on this special need here.
Ichthyosis
Ichthyosis: the ichthyoses (plural) are a family of genetic diseases characterized by dry, thickened, scaling skin. Because each form of ichthyosis is rare and there is an overlap of clinical features among disease types, the medical community disagrees about clear definitions and classifications of its many forms.
Amy shares how, after thinking they might not ever be able to adopt again, they brought home Gabriel, a little boy with ichthyosis.
Read more NHBO posts on this special need here.
If you are parenting a child from China with a special need and would like to share your story on No Hands But Ours, let us know. Just complete this short form and we’ll be in touch with you soon.
Leave a Reply