Thomas and Eli

November 23, 2008 albinism, CCAI, Family Stories, Skin Conditions 0 Comments

Q and A with Chris, mom to two children from China with Albinism

What made you decide to pursue a child through the SN program?

When we started looking at the adoption process, we thought filling out the Medical Conditions Checklist was something we were supposed to do as part of the application. When we looked at the special needs, many did not seem very special at all. As a Speech-Language Pathologist and at the time working on a Cleft Team, we assumed we would be referred a little girl with a cleft lip/palate. We were open to all the limb differences and scars, birthmarks and visible needs. We said maybe to heart conditions and more serious medical conditions. We also said maybe to some less well known conditions like Albinism. We even selected ‘no’ for a few conditions – those were the hardest to check. It almost felt like shopping for a child. You look online for the car you want and click all the features you want and *tada* there’s your car…you pick the medical conditions you are and aren’t willing to bring into your home and *tada* here’s your child. In the end we weren’t referred a dark haired little girl with a cleft lip/palate. We are the parents to an extremely goofy little boy with white hair due to Albinism. for our second adoption, again there was no question about submitting the Medical Checklist. In fact, we submitted it 6 weeks prior to our application. We did have more yeses this time. We now also have a little girl with Albinism. They both have two different types of Albinism and are
much brother and sister as if they shared DNA.

What was your experience like with the SN program?

We have adopted two children through our agency’s Waiting Child Program. Both experiences were wonderful – our first was better than the second. The first experience was completely new to us and we weren’t jaded by the process. The second time the process felt less personal and more businesslike. Our trips were both completely different as well. On our first trip we were with one other family and on our second trip we were alone. However, I would do it all again and again. We didn’t search photolistings for either child. We relied on our agnecy’s WCP folks to match us – and God’s intervention.

Were you happy with the agency you used? Why or why not?

At the time we were very happy with our agency (CCAI). Since our adoptions, they have made several changes that seems to have taken away the personal touches that made us so happy with our agency. They were very detailed with the paperwork and letting us know what we needed. there were no surprises beyond what they had no control over. And we have enjoyed ‘popping in’ for visits when in the area.

Have there been any additional issues with your child? (medical, attachment, etc)

When we adopted both our children from China, we knew there were unknowns. Just like having a biological child, you never fully know what your child is going to be like as they grow. Both adoptions were so very different. Our son immediately came to us, called me Mama and did not have difficulty transitioning. Our daughter cried, screamed, didn’t sleep. She received some occupational therapy for Sensory Integration Disorder and left side weakness. She has also been diagnosed with Attachment Disorder. These additional issues were not what we were anticipating – especially 2 years after coming home with her. We do holding time with both and brushing with our daughter. It is a daily task figuring out what will work for our children and us. However, we are making it and there is a lot of love shared among all of us!

Has your child’s SN been what you expected? Were you prepared? What advice would you like to share with others regarding your child’s SN?

Both children have Albinism. When we were referred our son, the only person I knew who had Albinism was the weird guy who worked in the independent record shop. I think the shop sold more than records and he was very strange. Prior to saying ‘yes’ I researched Albinism online and got in touch with the National Organization for Albinism and Hypopigmentation (NOAH). They are a wealth of information. I also joined an email group for parents of children adopted from China with Albinism. Both of these groups helped us prepare for our children. They are both legally blind and need hats/sunscreen when they go outside. They have IEP’s at school to help with their vision and are learning Braille. What is most surprising to us is the ignorance of people in the community and their willingness to open their mouth and say whatever they want. I wasn’t prepared to have people tell me in a not so nice manner that my children are not 100% Chinese, that they won’t succeed in school, that they are cursed, that there is nothing wrong with their vision, etc.

Albinism is very misunderstood. Even prospective adoptive parents often don’t select Albinism as a special need due to misunderstanding. People don’t understand that ‘legally blind’ does NOT mean totally blind. If you weren’t told my children had a vision deficit, you may not know it. And remembering to slather them in sunscreen and wear hats when outside is now a fact of life for us.

Also – Albinism is looked at as a curse in many countries and people with Albinism are unable to get married or find a job. In the United States, that is not the case. People with Albinism are singers, physicians, teachers, paralympic and professional athletes, photographers, and many other careers. They lead successful productive lives. Driving may never happen, but then again, there are surgeries and medical advances that may make it possible.

Was Albinism what I expected?
They are more amazing than I ever dreamed!

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