We didn’t plan to adopt a child with white hair.
I wouldn’t assume many do when they consider adopting a child from China.
I fell in love with our son Noah’s face and short description one night while perusing the waiting children on RainbowKids. Adoption was something my husband and I had prayed about, discussed many times and I had been researching for months… but when I envisioned a child waiting for us they never looked like this.
Albinism is much more than white hair. But I can tell you as a mother of four children (two of which have albinism), the comments about the white hair are what my children contend with the most, not the visual impairment.
In the months after we committed to adopting our son, I learned so much from NOAH – the National Organization for Albinism and Hypopigmentation. Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, and/or eyes. In fact albinism occurs in all racial and ethnic groups throughout the world. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds.
Eye problems in albinism result from the abnormal development of the eye because of a lack of pigment and this includes the following:
nystagmus – the regular horizontal back and forth movement of the eyes
strabismus – muscle imbalance of the eyes
esotropia – “crossed eyes”
exotropia – “lazy eye” or an eye that deviates out
photophobia – sensitivity to bright light and glare and refractive error
Our children are also nearsighted and have astigmatism.
Our son’s strabismus was easily and quickly corrected through a 30-minute surgery done by a pediatric ophthalmologist. Every six months we visit a pediatric optometrist who specializes in low vision and once a year a dermatologist for a full skin check. He does wear prescription glasses inside and sunglasses when outdoors. Sunscreen with an SPF of 50 and a hat with UV protection are also a part of his daily routine. He swims (with ease) and often wears tinted goggles.
He is a remarkable child who has overcome his visual impairment even as an orphan largely as a result of the excellent care in China as an infant from Show Hope and Half the Sky, and as a toddler and preschooler from Bethel China.
Noah attends public elementary school now and has an IEP (individual educational plan). His accommodations are few but primarily include preferential seating and a visit once a week from a TVI (teacher for visually impaired). Using a computer with a mouse and seeing the tiny cursor was a small struggle for him until the TVI recommended that the cursor could be made bold. Noah is also learning to use a doom magnifier and a lighted hand-held magnifier.
In the two and a half years years since Noah joined our family, we have also adopted a daughter from China, with albinism as well. She is a true joy and the result of (perhaps) failed advocacy on my part. Seeing another child the same age with the same needs was one of the ways God convicted us to adopt Sadie. We hadn’t planned to add any more children to our family but having already experienced albinism with our son, envisioning two with shared heritage and the same need seemed less scary.
Our daughter has similar vision (20/200) but received no services at her orphanage. I anticipate she may need additional help with fine motor down the line, but she is just as capable as any other five year old. I can say that because I have three five year olds now! We have two biological children, Ella (age nine) and Beckett (age five)… you wouldn’t believe the comments I get with all of them out together!
So much of the unknowns were intimidating to me before we lived it; but now I can rarely tell a difference between the capabilities of my two with albinism and that of the same aged brother without albinism.
Our daughter Sadie attends private pre-kindergarten at a church. She has been home with us a year now. She is able to write her name, cut with scissors independently, and is trying to tie her own shoes. She keeps up with everything that her siblings do. Neither of my children with albinism use a cane or Braille, although those are some of the resources that are available in addition to many others.
I try to remind my children they are special because of who they are not because of the white hair. They do know they look different but handle the white hair comments with grace.