Special is in the Eye of the Beholder

September 11, 2018 adopting as first time parents, Adopting Scenarios, albinism, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions, switching to another country 2 Comments

It was only a couple of months after we were married that my husband and I started researching adoption. We both wanted a family, and with me being over 40 and having a history of endometriosis, conception without major fertility treatments seemed nearly impossible.

We decided, for us, it was more important to parent a child than to biologically reproduce.

Our first endeavor was domestic adoption. We joined a local adoption support group, the Adoptive Parents Committee (APC). We attended monthly meetings and their yearly conventions. We looked at agencies, hired an attorney, advertised our desire to grow our family.

Two years passed. Both my parents passed. Our living situation had changed dramatically from when we started the journey.

On the suggestion of a friend. I started looking into international adoption, specifically China. Having heard that “special needs” were common, I was very apprehensive at first. My friend assured me that the concept of special needs in other countries was vastly different from what we would consider special needs. She was so right. Many of the conditions of which I read seemed very manageable.

Armed with my new knowledge, I signed up with RainbowKids, an advocacy site for special needs waiting children around the world. One of the first profiles I clicked on was that a cranky looking toddler with a shock of platinum blonde hair. This little cutie was 1.5 year old, in China, and had a condition called albinism.

I had no real life experience with anyone with this albinism. My thoughts went to Boo Radley from To Kill a Mockingbird, and to the white alligator I saw at the aquarium in New Orleans. I started scouring the web to read all I could about it and about adopting a child with this condition. I kept going back to this photo. I somehow knew this was our daughter.

They say not to fall in love with a picture, but I couldn’t help it, I was smitten.

I already knew that people with albinism (PWA) had light skin, hair and eyes because their bodies produce little or no melanin. So there is sun sensitivity and an increased risk for skin cancer. I didn’t realize all PWA have some degree of visual impairment. Melanin is involved with the development of the optic nerve. There can be photosensitivity of the eyes, extreme nearsightedness or farsightedness, astigmatism, poor depth perception, nystagmus (rapid, involuntary movement of the eyes from side to side, sometimes called “dancing eyes”) and strabismus (crossed eyes).

Albinism is considered Special Focus in China, which denotes children who are harder to place for adoption because their conditions are not correctable by surgery or they have more moderate to severe special needs. It is a genetic condition so there is no treatment, and the visual impairment is considered a special need. Intelligence and life span are not affected by albinism on its own. However, there are two very rare genetic disorders that can be present with Albinism, Hermansky-Pudlak Syndrome and Chediak-Higashi Syndrome. These have more severe symptoms and affect life expectancy.

I discovered that culturally in China, albinism has been considered unlucky and individuals with this condition have been ostracized from mainstream society.

I contacted the agency that was holding the file to find out more about this fair-haired munchkin. After giving them some general information about our family, we received more photos and a history and medical file to review. Ellie had been abandoned when she was a day old, but left in a place where she was certain to be found. I could only imagine someone saw the fair hair when she was born and believed that this was the way for her to have a better life. She seemed to be “cranky” in her photos because of her photosensitivity.

My husband Dennis took a little convincing to pursue international adoption, especially for a child considered to have special needs. The home study was a lot more involved – we would have to apply to USCIS, and would have to spend about two weeks in China to complete the process. I explained that we had no prospects on the domestic front and that this child was waiting for a family; she wasn’t perfect but she perfect was for us. After much discussion, Dennis came around.

After having Ellie’s file reviewed by an adoption doctor we had met at the APC annual adoption convention, we decided to take the plunge and move forward with the process. We received pre-approval in November 2016 and had six months to submit our dossier to China.

Fast forward a year almost to the day and we were in China meeting Ellie for the first time. In the space of that year we received occasional updates and photos, cherishing any tidbits of information about this beautiful baby girl. We sent a few care packages including a birthday cake for her 2nd birthday.

Did she know we were on the other side of the world waiting to meet her?
We had fallen in love with our soon to be daughter, but what if she didn’t even like us?

It was more nerve racking than a first date.

After a few days of sightseeing in Beijing, we arrived in Hefei City. Our guide brought us to the civic office and a woman from the orphanage brought in this blond little girl, all bundled up in a winter coat. She was wearing the sunglasses we sent to her in a care package. She seemed a little dazed but friendly. There were a few other children meeting their families for the first time. One little boy wouldn’t stop crying. Ellie went over to console him and give him a hug. What a sweet girl!

The next two weeks were a blur of adapting to life with a new child, and Ellie’s special needs seemed very minor. The staff at the hotels in China were always surprised to hear Ellie say things in Mandarin. With her blond hair and sunglasses, they thought she was an American child.

We have been home for almost 9 months now and the challenges we have encountered have more to do with being first time parents and raising an active toddler than Ellie’s albinism.

Sunscreen is a must, daily and frequently if we are spending time in the sun. We cover as much skin as is comfortable. Luckily Ellie loves wearing hats, so we let her pick one before leaving the house. We try to stay indoors when the sun is highest in the sky on particularly sunny days. We have taken Ellie to the beach and she loves it. We hang out under a large umbrella. Luckily rash guard shirts, which are long sleeved swim shirts that offer protection from the sun, are easy to find.

Our pediatrician referred us to a neuro-ophthalmologist. We had an initial exam and two follow up visits so far. Since Ellie was not yet 3 years old for her first visits, her vision couldn’t be assessed with the standard eye charts and asking which letters were clearer. The doctor could measure the curvature of her eyes, and said she had a pretty significant astigmatism. The doctor was able to prescribe corrective lens. I wear glasses myself, so Ellie was thrilled to be able to wear “sassies” like Mama. Our daughter has transitions lens in her glasses, so they become like sunglasses when the light is bright. A definite must with her light sensitivity.

Ellie has nystagmus, but it may lessen as she gets older. Her eyes tend to “dance” more when she is tired. She is a very active toddler and she sometimes trips and runs into things. We are not sure if this from poor depth perception or just being a toddler running around not paying enough attention to her surroundings. She likes playing and watching videos on a tablet and seems to see pretty well, although sometimes she holds it closer to her face. She will be starting pre-school soon and visual problems may become more apparent in a classroom setting.

I have always been a non-conformist and celebrate unique qualities in other individuals. I try to see beyond what lies on the surface. Right now, people see Ellie and she is just a vibrant toddler.

Light blond hair at her age is not uncommon, and with her sunglasses her Asian features are not apparent. We often hear the comment that many women pay a lot of money to have hair her color. As she grows older, I imagine, she will realize she looks a lot different than her classmates. We will be mindful of self-esteem issues, even though she is more than perfect in our eyes. We plan to help her connect to others in the albinism community, if this is something in which she shows interest.

I am thankful for all those who have contributed stories concerning special needs adoption. Hearing the experiences of others really made the difference in our decision.

We may have missed out on a beautiful daughter by thinking that special was scary. I’m happy to answer any questions about our adoption process at mrs.bublitz@gmail.com

– guest post by Marianne

2 responses to “Special is in the Eye of the Beholder”

  1. Caprice says:

    I am so proud to call you a friend, and even prouder of your decision to adopt a special child. You won the prize with Ellie.

  2. Ah, sweet mamma. This article made me cry. I am so happy you have this wonderful child in your life. She is so blessed.As far as running into things, my oldest daughter who has perfect vision ran into chairs, doors, tripped over toys and grew up to be a professional dancer. Sometimes it is a matter of attention and excitement. Love to all of you,

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