Disabilities Awareness Month: An Adoption Story

 

 

Lilly, born in China, was welcomed into the loving arms of her mom and dad, Jenny and Daniel, at the age of 3 years.  That was nearly a decade ago, not long after I began working with the China program!  I recently reconnected with Jenny to talk about Lilly’s journey over the past ten years.   Jenny fondly recalls the excitement of being matched with Lilly.  Although they were thrilled to become parents, there were looming questions about her diagnosis which had the potential to cause great fear.  Lilly was born with spina bifida and hydrocephalus, both of which were surgically repaired in China shortly after her birth.  Jenny shared that while she and her husband were hopeful that the surgeries had been successful, they did not know the extent of damage or what her future would hold.

As directed, they researched her medical needs and spoke to a physician specializing in international adoption.  They learned of worst case scenarios while staying cautiously optimistic.  Jenny stated it was easy to allow fear to slip in as they waited to travel.  While worrying about mobility issues, possible paralysis, cognitive deficits, future needs and surgeries, they also began thinking about accommodations that could be made to ensure she was given the best life they could provide for her.  Through it all, they trusted God would provide and pressed forward.

Lilly came to them as a tiny 28 pound 3 year old wearing 12-18 month clothing.  She could barely walk and had many other physical delays common of children coming from less than optimal care.  These deficits were quickly overcome through short term therapy. Jenny reports, however, that the personality that emerged within a few days of placement in China is the same personality Lilly exhibits today which has allowed her to overcome and flourish.

Due to the spina bifida, Lilly has some hip displacement and wears braces on her legs requiring occasional appointments at Shriners Hospital for adjustments.  Because of the hydrocephalus, she has a shunt and sees a neurologist every other year.  She also requires annual visits to an ophthalmologist to check the pressure behind her eyes.  Despite the braces, mobility is not an issue and she even cheers for an Upward basketball team!  She is actively involved in choir, musicals and theatre and does not allow her orthotics to limit her abilities. Cognitively, she is fine and does well in school.  Other than medical visits to monitor her conditions, Lilly is a typical pre-teen on the brink of celebrating her 13th birthday next month.

Jenny told me that as a parent, her greatest challenge has been advocating for her daughter medically.  While she trusts her treating specialists and referred to them as “amazing,” she also trusts her own instincts as Lilly’s mother.  She shared that the neuro department wanted to perform a procedure on Lilly’s shunt, however, Lilly was not showing any neurological symptoms to indicate intervention was needed at the time.  Despite the surgical recommendation, they made a decision together as a family to wait after learning there were more risks with having the surgery than not.  They realize that surgery may be needed in the future and will face that when the time comes.

Jenny and Daniel have also taught Lilly how to deal with curious questions from her friends as well as prying questions from others.  They have given her the confidence that her adoption story and tough beginning are HER story and she can choose to share the details or keep them private.  Her outgoing personality works to her favor in this regard.

When I asked Jenny what she would like other parents to know as they consider a special needs adoption, she said, “Disability does not mean constant illness and inabilities.”  She shared that Lilly is a very healthy child and in the past 10 years, has probably seen her pediatrician for sick visits only 3-4 times.  She also reiterated all of the positives in Lilly’s life and above all she wanted to share that Lilly had taught her and the rest of their family to persevere.  Watching Lilly navigate the hardships in her life “has been amazing to see!”  In talking with Jenny, it became clear long before she said it that, “As her mother, she makes me so proud!”

2 Timothy 1:7 For God gave us a spirit not of fear but of power and love and self-control.

Philippians 4:6-7 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Celebrate World Down Syndrome Day

 

 

Did you realize that today is World Down Syndrome Day? Why the 21st of March, you ask? The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

 

Nightlight has had the privilege of assisting many families to adopt children with down syndrome both domestically and internationally. You’ll love hearing from some of these kiddos family members and reading their thoughts about these precious children. We did!

 

“Being parents to Emalyn and Ryker is a huge joy. Those of us who have a child with Down syndrome consider ourselves the lucky few. Although in most ways people with DS are just like everyone else, they also exude an empathy and kindness that is hard to image unless you’ve experience it. There are sometimes struggles, but there is joy that outweighs any struggles a million times over. Daily I look at these sweet children who happen to have an extra 21st chromosome and feel immensely blessed that I get to be their mom. “—Rachael, an adoptive mom

 

“People with Down Syndrome are so awesome! Zeb has the biggest love tank and pats my back even when I’m fake crying!” – Emma Kate, Age 6

“My brother has Down Syndrome and he is a kid, just like me! I’m bigger than him but he’s cooler!!” – Hendrix, Age 8

 

 

Feeling led to adopt a child with down syndrome? Visit our Child Advocacy Website to view the profiles of children needing a forever home TODAY!

www.AdoptionBridge.org

Why You Should Stop Waiting and Switch to the China Special Needs Program

If you have you been waiting for a “healthy” referral from China or are signed up to receive a referral from another country and have been waiting, you may want to consider making a change.  Last year, 2,040 children entered the United States through Intercountry adoption from China.  China remains the largest Intercountry adoption program and the majority of these children are children with special needs.  However, let’s talk about what China considers special needs versus what we here in the US consider special needs.

In the United States, when we hear the term “Special Needs” we usually think of a child in a wheelchair or in a special classroom.  For the sake of adoptions, please know that special needs can certainly encompass those children, but more often than not, these children have a medical condition which made them “undesirable” in China.  First, China does not have a good support system for families who have a child with special needs. Secondly, because of their one-child policy history, most parents desire a “perfect” only child. Any medical condition, even the most minor, will cause the child to be abandoned.  This means children are available for adoption who have repairable heart conditions, cleft lip/palate, club feet, were born premature, have thalassemia, and various other repairable or manageable conditions.

China classifies their children into “Special Focus” and “non-Special Focus”.  Typically, Special Focus children have more moderate to severe special needs and the CCCWA gives us up to 3 months to match those children with families.  The non-Special Focus children are usually younger and have more minor special needs.  The CCCWA only gives us 3 weeks to match these children with families and they can only be matched with families who are logged-in and who have a valid home study and USCIS approval.

__ Pan Xue with pig art June 2011Lately, we have had much success in matching many of our families who are waiting for children with special needs, and because we have expanded our One to One partnerships and are now working with 3 orphanages, we anticipate receiving an increased number of files for children who would be considered non special focus.  These are the children who can only be matched with logged in families who have a valid immigration approval.  We want to encourage those of you waiting in the China traditional program or waiting in another country program with Nightlight to consider the special needs program.  If you are in this position, please contact us to discuss.  Nightlight desires to place waiting children into waiting families and does not desire to see families waiting in other programs.  Because of this, we are willing to credit these NCA transferring families with fees already paid to another NCA program, as much as possible, toward fees due in the China program.

For those of you who have a dossier logged-in through the traditional program, we encourage you to update your home study and apply for a new I-800A USCIS approval so that if we receive files of children with minor special needs, we can at least call you and tell you about them.  As of now, we are prohibited from matching a child with a family if the family does not have the proper government approvals to be matched.   China places this restriction because they want the children to come home to a family as soon as possible.

It can take 3 to 4 months to update your home study and immigration approval for China.  If you are also completing a dossier for China, it will likely take 4 to 6 months to get your dossier logged in so that you are ready to accept a referral.  Don’t delay getting started as soon as possible.

Once you make the decision this is something you will consider, we will have you complete a Medical Conditions Checklist and provide information to help you research various special needs which are commonly seen from China.  You and your family would have an opportunity to review these medical conditions and mark those you would be willing to consider.  When we received the file of a child which meets your preferences, we will call you to discuss and you will have the opportunity to review the file prior to accepting or declining the referral.

If you would like to discuss the possibility of switching to the China Waiting Child program from either the traditional China program or another NCA adoption program, please call or e-mail Stephanie@nightlight.org or Hannah@nightlight.org.

Best of Nightlight: Extraordinary Kids – Understanding Special Needs Adoption

cerebral Palsy“Focus on: Cerebral Palsy”

Many families pursuing international adoption are intimidated by the options, the process, as well as the potential challenges. So when a family hears about “special needs” adoption, they can feel completely overwhelmed.

But the truth is that most of these special needs are quite misunderstood and often can be corrected with minor treatments or training.

This week, we put a special focus on special needs adoption by taking a revealing look at cerebral palsy. The following was written by Joan Francis, an attorney whose expertise is in Family, Disability and Juvenile Law, and who has also adopted a special needs child.

“What is cerebral palsy (CP)?

Any situation involving any level of brain damage immediately before, during, or within about a year after birth is essentially by definition “cerebral palsy,” unless other diagnoses also apply. Typically this is due to deprivation of oxygen on a temporary basis or bleeding in the brain, which sometimes occurs in very premature infants.  Injury to the brain after a child is one year old is usually called TBI (traumatic brain injury) —for example: a blow to the head, near-drowning, shaken baby, etc.

Many with CP may have great difficulties in one area (such as severe dyslexia) but display almost photographic memory, dramatic intuitive thought, and comprehension, as well as  other unexpected gifts as well.

CP is a STABLE condition; it does not worsen, but can definitely improve over time. By itself it does not shorten life expectancy and so on. Continue reading

Neurochemistry and the Adopted Child

Karyn Purvis, a professor at TCU and the author of The Connected Child, discusses how children’s brain neurochemistry can be negatively changed due to early life experiences, causing the child to have learning, social, and behavioral issues. Neurochemicals are the chemicals in the brain that send signals. So if the brain is not sending the right signals this can affect the brain directly as well as the child’s behavior.

There are six major risk factors to a child’s healthy brain development:

  • Difficult pregnancy:
    This can include drugs, alcohol, and a mother’s dealing with stressful situations.
  • Difficult birth:
    If the mother had a prolonged labor in which child was removed harshly by forceps, this can cause bleeding in capillaries in brain.
  • Early hospitalization:
    Usually an infant will have received less touch, disrupted time with mother, painful procedures, and overstimulation due to medical equipment and procedures. This can be experienced as neglect by the infant and the overstimulation can result in impaired sensory response. Continue reading

Adopting the HIV Positive Child, Part III: Telling Your Family and Friends

(Also read Adoption and HIV, Part 1: Know the Facts and Adopting the HIV Positive Child, Part II.

You can study and learn lots about the HIV/AIDS, how a child may become HIV positive, how the child will fare, what medications are available, and even how contagious the child is to other family members. But all the facts still do not answer the questions that every prospective adoptive parent must ask: “What is it like to raise an HIV Child?”; “What does the future hold?”; “What will others think?“

Before you adopt a child—any child—it is only natural to consider what the response of friends and family will be. After all, this is one of the steps in the adoption process—telling others.

As with all adoptions, your family members may expect that you will adopt a child who will be like a birth child. But instead of announcing that you are adopting a healthy, newborn infant, you may then be explaining to them that you are adopting a child of another race, an older child, or a child with special needs. Continue reading

Adopting the HIV Positive Child, Part II

Because HIV infection is so serious, and children and adults alike are more prone to other infections, keeping a child strong and healthy is very important. And because children do not have the same reserves as adults, good nutrition is especially important for them.  In poorer countries and in orphanages, where children oftentimes receive less than optimum nutrition, their bodies are further compromised and more prone to infection.

That is why in other countries, orphanages dedicated to the care of HIV positive children receive extra funding  and attention so that the children can receive the extra medical and nutritional care that they need.

If you are considering adopting an HIV positive child, most likely you are adopting a child who is a true orphan and you will truly be giving a child the gift of life. We at Nightlight will be featuring children from Eastern Europe and Africa who are HIV positive. There are certainly considerations that need be taken before you and your family decide to adopt a child who is HIV positive and you will want to be well educated regarding HIV and AIDS in general and the issues you and a and HIV-positive child will face. Continue reading

Adoption and HIV, Part 1: Know the Facts

AfricaAIDsRibbonMany families are now choosing to adopt children who are HIV positive. The children can come from any country, but the majority of HIV positive children come from Africa.  About 3 million children in sub-Saharan Africa are infected with the HIV virus, and 90% of all children with HIV come from this region.

Because of parents dying from AIDS there are an estimated 25 million more children who are orphaned. [1] In Uganda, there are about 2 million orphans. Of those, 1.2 million have lost one or both parents to AIDS. [2] There are millions more who will become orphans.

In the U.S. and Western Europe, the incidence of HIV infection in children has been drastically reduced due to pregnant women taking what are called antiretroviral drugs, which lower the rate substantially of a mother’s passing on the infection to her unborn child.

Even in poorer countries, such as Uganda, this medication is available. However, many people, especially those in rural areas, do not have access to the medication.  Unlike children in Western countries, those in sub-Saharan Africa are much more likely to die from the infection. For these children who do become HIV infected, 50% will die before they reach their second birthday. In fact, the mortality rate due to HIV/AIDS in children under 5 years old has increased by 20-40%. [3] Continue reading

Spina Bifida Occulta: Part II

bigstock_Adorable_Asian_Baby_With_Spark_938600Spina Bifida Occulta (SPO) is considered the least detrimental of the Spina bifida disorders, and is estimated to affect 10-20% of the population, so clearly many people have the disorder and do not know. The children from China or other countries who have no symptoms would not be classified as having special needs. However, there are types of SPO that do have symptoms.

These are the main categories of Spina Bifida Occulta

  • Thickened filum terminal: The spinal cord is too thick.
  • Fatty filum terminale: There is fatty tissue at end of the spinal cord.
  • Diastematomyelia (split spinal cord) and diplomyelia: The spinal cord is split in two and this split is often caused by a piece of bone.
  • Dermal sinus tract: The spinal cord and the skin on the back are connected by what looks like a band of tissue.
  • Tethered spinal cord in which the end of spinal cord is attached in the wrong way and, therefore, becomes stretched
  • Dipomyelomeningocele and lipomeningocele where the spinal cord is attached to a fatty tumor [1] Continue reading

Spina Bifida: Part I

Welcome to the first in a 6-part series on Spina Bifida. In the following posts we will discuss each of the types of Spina Bifida (SB); making the decision to adopt a child with SB; and the treatment and prognosis for these children.spinalcolumn

SB is a condition that occurs during the first month of fetal development in which the bones on the child’s back, called the vertebrae, do not fully enclose over the spinal cord.  It can be very mild and never noticed or it can be very severe, causing a child to have paraplegia or quadriplegia. It is a neural tube defect, and here in the US, with more women taking folic acid before conceiving and during pregnancy, the incidence of SB has decreased significantly.

In the US, the condition is most common among Whites  and least common among Asians. However, in China  there are reportedly 200 infants born with SB for every 10,000 births (see footnote); in the US, the incidence is 5-10 for every 10,000 births.  Certainly, SB is represented among the more than one million Chinese children born each year with special needs.

There may be a genetic component to SB as well as environmental factors that contribute to the condition. Continue reading