- How did your family make the decision to adopt a child with a special need?
When we first started researching adoption and various agencies, we were made aware of some specializing in 'special needs' children.Upon applying to our agency, we reviewed the Medical Needs Checklist and discussed each option. We were able to check yes, no or maybe to every option/type of need. If we weren't familiar with a particular medical need, we did a quick search and answered the question. I am a Speech-Language Pathologist and I was amazed at what was considered a special need. Needless to say we had a lot of yeses on our list. We didn't even think about it being a faster process, we were just keeping all of our options open knowing that with proper medical care or a difference in cultural attitude a special need is not so special in the end.
However, we did decline any obvious life threatening issues due to having lost our only biological child only 7 months prior to applying to adopt.
- How did you come to the decision to adopt a child with albinism?
Adopting a child with albinism was something that never even crossed our minds. Being a Speech Therapist and on a cleft team at the time, I figured we would be matched with a little girl with cleft lip/palate. When we were told they had a potential match for us and then we received the photos, we were looking at a little boy with white hair, lilac eyes and mischief written all over his face. We took about 2 days to research albinism. My previous experience with someone with albinism was a guy who ran an independent record shop and was always a bit strange to me. We contacted the National Organization for Albinism and Hypopigmentation (NOAH) and read a few blogs. Doing this helped us discover that albinism was very misunderstood and that we were looking at a photo of our son.
- What is it like to parent a child with albinism?
Parenting a child (or 2) with albinism is all I know. Watching them with other children, you quickly realize how normal they are. They play, argue, laugh, get in trouble, snuggle and fight with each other like all kids. We do have to be cautious when outside and try to keep the lights inside not too bright.
- What can be done about his or her medical condition?
Albinism is a genetic disorder. Both parents have to carry the same recessive gene for the child to have albinism. Both of my children have different types of albinism. Albinism effects their pigmentation, skin color, hair color and vision. For their skin we keep sunscreen on them year round and have them wear hats and sunglasses when outside. Many people with albinism are legally blind - not totally blind. If you watched my children for 2 minutes, you would wonder if they even had any vision issues at all!
For their vision they have glasses. Finding an excellent pediatric ophthamologist is imperative when you have a child with albinism. Some parents opt to have surgery on their children's eyes to help dampen or slow down the nystagmus (eye wiggle) and to straighten the null point (where your eyes focus) Some opt not to have surgery. A pediatric dermatologist is also helpful. Due to the lack of pigmentation, people with albinism are very prone to skin cancer. A dermatologist and regular follow-ups can help prevent this from happening.
Otherwise children with albinism are healthy and have normal cognitive abilities.
- So what does it mean to your child to have albinism? (Are there any differences in daily life, school, sports?)
Due to the skin and vision issues, there are some adaptations that need to be made. We had to get dark tint on our car windows after our son was burned through the window one day. We request front row/preferential seating when attending events so they can see what is happening. (very helpful at places like Disney!)
Both children have glasses and IEPs (individual education plans) at school. Some parents opt to have their child learn braille while some do not. We started out having our children learn braille, but are transitioning away from that at this point and focusing on other technologies. TA is in first grade and uses a slant board to help reduce neck and back strain from leaning down to see his paper, has accommodations in the classroom to help with his vision such as preferential seating, high contrast items, large print, bold lined paper and a dark writing utensil.
EQ is only 4 so she doesn't need many accommodations.
As far as sports, both have been involved in gymnastics. EQ takes tap and ballet. TQ has played soccer and is starting Tae Kwan Do. We try to avoid small ball sports due to TA's lack of depth perception, but I know of a gal with albinism who plays softball on a college scholarship. I also know of paralympians with albinism who have won medals in the paralympics.
Most people with albinism do not drive, although some do using special glasses and other technology. It depends on each individual state as to whether or not a person can drive with the special glasses.
- Can we do this?
Absolutely. Many people have a misunderstanding or fear of albinism largely perpetuated by movies. People with albinism are normal in life span and intelligence. You just have to be diligent with the sun care and vision issues.
- But what about home life?
We let them sit closer to the tv than most would allow. Otherwise, they play, have chores, and participate in the family like any other pigmented child would. We let them tell us what they need and offer suggestions when they need them to help their vision. It is a pretty normal house with two crazy children and two super busy parents as a couple of dogs thrown in. When we do special things like AWANA and scouts, we get large print copies of the manuals to use. They know they are different than other children from China and they know why.
- If we adopt, what could our child with albinism hope for in the future?
To do almost anything they want. We tell our children they can be anything they want except president is the USA (against the constitution due to not being naturally born citizens.) I know adults with albinism who are physicians, teachers, computer programmers, defense contractors, musicians, dancers, artists, swimmers, writers, administrators, etc. The list of possibilities is endless. The best thing to teach your child with albinism is that they can achieve their dreams. The next is to help them learn how to self advocate.