Our Fair-Haired Hero: Adopting a Child with Albinism

September 17, 2016 albinism, Education, Family Stories, older child adoption, public school, September 2016 Feature - Skin Conditions, Skin Conditions, TVI, vision issues 0 Comments

Her name was spoken to us before we even knew who she was….

We had adopted from China in 2011 and just started the process to adopt again. One night I let myself start thinking about names for our new little one and after spending more time than I care to admit looking at baby names, one jumped instantly out at me. I fell in love with it… Finley.

We were open to a boy or girl this time around so I loved that it was a name that would work for both. I looked up the meaning of the name and much to my surprise discovered that it meant “fair haired hero”. Well, that name certainly wasn’t the right fit for the dark haired little Chinese boy or girl who would be joining our family! Yes, albinism was on our SN checklist, but what were the odds?

Fast forward a few weeks later to an email asking if we would like to review the file of a little one. Of course our answer was yes and a few minutes later the email came across and there she was, a beautiful little white(!) haired girl from Inner Mongolia.

We had found our fair haired hero.

We had found our Finley.

We said yes.


martha3


After our first adoption from China in 2011, we found ourselves open to many more special needs that we had the first time around. One of the needs we added to our checklist was albinism. It wasn’t a need we’d been 100% comfortable with – concerns surrounding low vision and the fear of our child being singled out and teased for their appearance kept us from adding it.

But over the course of the three years since our first adoption, I was able to network online with many adoptive mamas. One in particular had a daughter from the same province as our first daughter, and then went on to adopt two children with albinism. She shared resources, struggles, and successes and was able to give me a view as to what daily life would look like with a child with albinism.

And you know what? It wasn’t much different than that of any other child.

As with any special needs adoption there were of course many unknowns. We wouldn’t know the extent of her low vision before meeting her (albinism affects the hair, skin, and eyes). We wouldn’t know if she was delayed (unfortunately children with albinism can come home very delayed due to low vision and/or neglect resulting from the stigma of their SN) before meeting her. Even though she had been in a wonderful foster home in Beijing for over a year when we received her referral, we wouldn’t know what the effects of being in an institutional environment for two and a half years would be. We wouldn’t know if she had additional special needs. We wouldn’t know if she would be able to attach to us after going from birth family to orphanage to foster family.

We did know 100% that she was our daughter. We were committed to accepting the unknowns, even unknowns that are not exclusive to albinism. Unknowns we had faced with our first daughter.

On a very cold winter’s night in late November in the lobby of a hotel in Inner Mongolia, we met a developmentally on target four and a half year old who ran into our arms and immediately called us “mama” and “baba”. She compensated amazingly well for her low vision (her vision is 20/400, legally blind is 20/200) thanks to the opportunities provided to her in her Little Flower Projects foster home.

She was a happy, healthy, talkative (oh so talkative!) little girl, and she was simply amazing!

Yes, our time in China was rough at times due to grieving. And yes, the first few months home were hard due to language loss and acquisition and continued grieving, but neither of those is exclusive to albinism. That is the face of adoption…grieving due to the multiple losses…. and it is to be prepared for in any adoption.

Once home our daily life with a child with albinism became something we were able to adapt to easily. Sunhats and sunglasses are always with us. We developed a daily routine for sunscreen application, and we made just a few small modifications around the house. We purchased a lower TV stand so Finley can get close enough to see, and we repositioned where we sits at the dining table so the sun isn’t in her eyes when she eats.

Appointments were made at the pediatrician, dermatologist, ophthalmologist, and dentist (many of these appointments had been arranged before we traveled). She received a clean bill of health, zero cavities, and her dermatologist had no concerns. Going forward we will meet with her ophthalmologist twice a year and her dermatologist once a year.


martha2


In preparing to bring our first daughter home from China, we received lots of training on how to adapt to being a conspicuous family. In all honesty we never really felt conspicuous until we came home with a child with albinism. We get attention and comments everywhere we go about her very white/blonde hair and her sunglasses. We hear “look at the little rockstar!” almost every time we leave the house as people do not realize that her sunglasses are medically necessary. Most people have never met someone with albinism and because she doesn’t meet the stereotype (people with albinism do not have pink eyes, hers are the prettiest light blue), they ask a lot of questions.

As a young child she isn’t as aware that her appearance brings so much attention, but as she gets older she will, and we want her to be as comfortable as possible with who she is. Those fears that I once had about her being teased and picked on creep back up on me every so often. We will work to do our best to ensure that she knows just how wonderful she is. And, yes she will always stand out in a crowd, but that can be a good thing!

People with albinism grow up and go to college (there is no link between albinism and intellectual delays), get married, are successful in their chosen professions, and have children (with and without albinism, albinism is the result of both parents being carriers of a recessive gene).

Because of her low vision, Finley easily qualified for an IEP. We started screening through the school district shortly after arriving home with her in anticipation of her starting kindergarten this fall. Depending on where you live it can sometimes take a while to get in to begin screening so I suggest you get in touch with your school district as soon as possible. Honestly, navigating IEPs and school systems is one of the trickiest parts of adoption for me as there really isn’t any training to prepare you for this.

Since Finley was over the age of three when she came home, she was too old for Early Intervention, but is receiving services and accommodations in the classroom via her IEP. Her TVI (Teacher for the Visually Impaired) was able to have her attend a vision clinic where she received a magnifier, monocle, and prescription sunglasses all free of charge. She has received an iPad through a local NOAH (National Organization for Albinism and Hypopigmentation) group to aid in her schoolwork at home.

Even though we completed her IEP in Illinois, we are in the process of moving and she just started kindergarten in a new state. Her IEP traveled with her as written, and she is receiving comparable services at her new school. Wrightslaw is a wonderful resource for parents of children with special needs who need assistance working their way through special needs education law.

I had the opportunity to go into Finley’s classroom on her first day and talk to her classmates about albinism and how she sees. I brought in her magnifier and monocular for the other kids to see and touch so they would be familiar with her tools. I gave them helpful hints to help with the social aspect of albinism. For instance if they say hi from across the room she may not see them, but if they say “Hi Finley, it’s (insert name)!” she will be able to respond appropriately. Lucky for us she is a social butterfly, and we have no doubt she will exceed everyone’s expectations.


martha


Even though you may have never met anyone with albinism, if you decide to adopt a child with albinism there are amazing groups and resources out there that provide much needed support. How long can my child be in the sun? what SPF sunscreen do I need? can they go to the beach? will chlorine in the pool turn their hair green? Trust me, you are not alone with these questions!

There are Facebook groups for parents of children with albinism and the NOAH site is a wonderful resource that we have found helpful at every stage of our journey so far.

Here are some links to FB groups:
Prospective Albinism Adoptive Families
Albinism Adoptive Families – once a family has PA
NOAH FB group

We have been able to network with other local families as well. Hearing our daughter excitedly talk about her friends and say, “They have albinism like me!” makes you realize how important making those connections are. We have had play dates, pool parties, and culture camps with other families who have children with albinism.

Personally I love the opportunity to educate potential adoptive parents about albinism and frequently find myself answering PMs and emails with many of the same questions and concerns we once had.

Finley has been home for nine months now. She continues to amaze us every single day! From moving halfway around the world with strangers, to learning a new language and starting school….the sky’s the limit for this little one.

“Though she be but little, she is fierce” is the perfect quote for her. There are no limitations on her daily life; she can do anything her big sister can do! In true sibling fashion, she is determined to do everything faster and better!

Swimming, riding a bike, hiking, playdates with friends, all of those things that so long ago I wondered and worried if a child with albinism would be able to do are just a part of our daily life now…

a daily life I wouldn’t trade for anything!

– guest post by Martha



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