*To protect the privacy of the families interviewed, only first names or aliases are used.
by Jennifer Doloski
In the Broadway musical Miss Saigon, the phrase “bui doi” or “dust of life” is used to describe the children unwanted by the society into which they were born:
they're called bui-doi
the dust of life
conceived in hell
and born in strife
they are the living reminders
of all the good we failed to do
we can't forget
must not forget
that they are all our children too
By some estimates, there are more than 143 million orphaned children worldwide. Some, perhaps, have been removed from the custody of unfit parents. Others may have lost their parents to AIDS, natural disasters such as tsunamis and earthquakes, or to the brutality of war and civil unrest. Some were surrendered by parents too impoverished to provide for a child. There are, however, hidden in orphanages throughout the world, orphaned at birth because they are different. Maybe the shape of their eyes or a telltale crease in the palms of their hands whisper the words “Down Syndrome.” Perhaps they were born with twisted or clubbed feet, deformed or missing limbs, or faces marked by a cleft palate. Maybe their features reveal a child forever scarred by a pregnancy in which the mother-to-be consumed alcohol.
“Asa” lives in an orphanage in Eastern Europe. Born with Spina Bifida, he was likely left at the hospital where he was born and transferred to an orphanage shortly after. Odds are, his mother was unaware of his condition until his birth. She may have grieved, unable to care for a much wanted child. Perhaps she recoiled, horrified by his deformities. In many cultures, a child such as Asa—born “less than perfect”—is believed to bear a curse. In Asa’s case, as a racial minority, his curse is doubled. An adoption in his own country is unlikely. As Asa approaches his fifth birthday, he faces a third curse. Transfer.
Once an Eastern European orphan “ages out” of a “baby house,” they are transferred. For the able-bodied, and those with less noticeable or easily managed special needs, transfer might mean moving to a facility similar to a boarding school. But for the child deemed 'severely intellectually impaired,' or immobile, 'transfer' means a mental institution. Filled with individuals ranging in age from 5-35 (older in some cases), Eastern European mental institutions are hiding places for those whom society has lost all hope. Relegated to cribs and wheelchairs, denied therapy, education, and often denied the stimulation of television or radio, children sent to mental institutions are essentially handed a death sentence.
Laura knows the curse of transfer all too well. Her adopted son, Phillip, was born in 2005 with Cerebral Palsy to an Eastern European mother. Laura and her husband, Jeremy, brought Phillip home to the Pacific Northwest in October 2011. After surviving a premature birth and spending the first two months of his life in the hospital, Phillip moved to an orphanage. By Eastern European standards, it was not a bad orphanage. However, Phillip transferred out of his orphanage shortly after his sixth birthday. He could not walk. While other children from his orphanage moved to a facility where they continued receiving therapy and education, because he could not walk, Phillip was sent to an adult mental institution.
This picture of Phillip was taken a year prior to his transfer. At that time, he could sit independently. You can see he is clearly engaged with the person taking his picture. Phillip was able to pull himself to a stand and drink from a cup.
This picture was taken about three months after that transfer, on the day Laura met her son.
Laura describes that day, “the first time we met Phillip, our entire world was rocked. We expected the happy, engaged little boy in the pictures. Instead, we found a little boy we honestly didn’t even recognize. Phillip was folded over in his wheelchair, alone, dejected, scared, and vacant. He wouldn’t make eye contact, wouldn’t track a toy across the floor, and wouldn’t turn to look if someone came in the room. He had completely withdrawn inside himself to escape the horror of what had happened.” Phillip's new room was full of grown, wheelchair-bound, non-verbal, mentally ill men.
“The report from his orphanage director, which we saw after the adoption was final, stated that Phillip was sweet, highly intelligent, eager to walk, potty trained and very loved,” Laura continues. “What we found was a non-verbal little boy who displayed autistic-like behaviors and could barely find the strength to sit up or crawl across the room. He was back in diapers.”
Jennifer Burns is a Certified Pediatric Nurse Practitioner and Clinical Director of the Pediatric Family Travel Clinic at the University of Chicago. She meets families through the University of Chicago’s International Adoption Clinic. Jennifer works with a variety of children with a myriad special needs.
“All adopted children have special needs whether it is with attachment or meeting developmental milestones,” says Burns. “Each adoptive family has its own special hurdle to overcome.”
Laura believes Phillip's hurdle is not Cerebral Palsy, a condition for which he receives care and therapy from local specialists including a few at Shriners Hospitals for Children.
“The hardest part of parenting Phillip is managing the effects that transfer had on him. It has taken us ten months to fully undo the trauma.” Laura describes adopting a little boy who could not handle daily errands and completely melted at something as ordinary as attending a sibling’s soccer match. She shares how Phillip shrieked, cried, rocked, and repetitively flapped his hands—actions perceived as autistic behaviors and called self-stimulation or “stimming.”
Allowing Phillip to feel safe and secure was harder than treating his Cerebral Palsy. “We believe he is now, in most ways, the little boy he was before transfer changed his whole world. In many ways, he’s better. He now feeds himself, colors, and is potty trained again. He makes eye contact, will look when called, will play with toys, and is sleeping in a regular bed in a room shared with his brothers. He had to learn to laugh and cry, to express emotions again. He had to learn he was safe and that this is forever. Phillip’s biggest special need is overcoming the emotional hurt that occurred when he was transferred.”
Says Burns, “The most exciting thing we get to see, as providers, is the child's acceptance into the family. Once the nurturing and trust is established, children will begin to thrive both physically and developmentally, making monumental strides in their development.”
Phillip, home and spending time where he loves it most – in the water:
Nannette Salasek is a Family Support Specialist with Raising Special Kids, an Arizona-based, non-profit agency connecting families with special need children and providing these families with support and information. Salasek has a nine-year-old daughter born with Spina Bifida. She strongly recommends families who prepare to adopt a child with special needs seek referrals and interview prospective pediatricians, specialists, and connect with families who have children living with a similar condition. Says Salesek, “The information we get from physicians is vital, but to connect with another parent in the same situation is invaluable.”
While Laura was humbled to have Phillip accepted as a Shriners patient before he arrived home, she agrees that the network of families raising children with Cerebral Palsy and adopted children from similar situations helps keep her sane. Salasek recommends searching the Internet with phrases like “parent training and information center,” adding the user’s home state. Many programs are federally funded, so every state provides some resources for parents of children with special needs. Laura found additional encouragement from online groups recommended by other parents.
Whether by birth or adoption, Salasek acknowledges parenting a child with special needs is overwhelming, but she offers this encouragement, “When you fall in love with a child–through birth or adoption–you will do whatever it takes to help that child grow into a beautiful and loving person. You just figure it out along the way. All of us have the capacity to love, and while the challenges seem many, the triumphs and graces seem to overpower the struggles.”
they're called bui-doi
the dust of life. . .
. . . these are souls in need
they need us to give
someone has to pay
for their chance to live
Here is a picture of Asa taken shortly after his third birthday:
Thankfully, for Phillip, his waiting ended. Asa, like millions of others, waits for a family to give him a chance to live, too.
Jennifer Doloski is a freelance writer and the mother of four. Her son, Joshua, joined the family in February 2012 when he was adopted from an orphanage in Eastern Europe. Jennifer keeps a blog of her family’s adventures and advocates for orphans at www.doloski.blogspot.com.