Miggy: Welcome Stephanie! Thank you so much for participating in today's Special Needs Spotlight. Let's start at the beginning, you adopted your daughter, Ruby, when she was 2 years old and presumably you already knew about her needs. Did you intentionally want to adopt a child with special needs or did you simply know that your daughter was meant to be with your family regardless of needs? Most of us special needs parents don't choose this path beforehand and often there is a lot of fear in the beginning. How did you feel in regards to her additional needs? Can you compare those first feelings with how you feel now?
Stephanie: Hi Miggy. When we first decided to adopt, we almost immediately knew we wanted a little girl from China. My parents have friends whom had adopted a little girl from China and she was the flower girl in our wedding. It just felt right. So we started to do research and discovered that to adopt a “healthy” child from China would take 5-7 years. We didn’t want to wait that long, so we chose special needs. Our oldest daughter had some medical needs/complications the first few years of her life so we felt called to adopt special needs.
While Daniel and I were still completing the adoption paperwork, we got a phone call from a woman at our agency. She said they had this program called Special Focus and asked if we were interested. Special Focus is a program for children with what they considered severe needs. The orphanages in China try to match these children with families as soon as possible. Daniel and I immediately said yes to the woman and she said “Great! You have been matched. I’m emailing you her profile right now. You have 48 hours to decide if you want to adopt her.” We were shocked. We still hadn’t completed all the paperwork to adopt, but we were matched.
We spent the next 48 hours reviewing her very small profile and medical report. We sent her information to our pediatrician for review. But, if I am real honest… the moment we opened that email, we just knew. She was our daughter. It didn’t matter what her needs, she was ours. Her needs didn’t scare me or worry me. I just wanted her home. We were ready for her to be home. My feelings about her needs have changed since she has been home. I’m still not scared but I do worry. Like all the time, but that is part of being a mom. I worry so she doesn’t have too. It’s my job to protect her. It’s my job to advocate for her.
Miggy: Will you please educate us about Ruby's condition and explain how her needs affect your day-to-day life?
Stephanie: So Ruby has albinism. The definition of albinism is a genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. It’s a very rare condition and every person's condition is different. Ruby has oculocutaneous albinism which means her skin, hair and eyes are affected by this condition. Her skin is very white but not as white as most people with albinism because she is Asian. Her skin is very sensitive too. We have to use special lotions, soaps, creams, etc. Ruby’s skin bruises and tears easily. If Ruby spends any time outside we must put on sunscreen. As you can see in the photo’s Ruby has blond hair. Her hair is very blond and very coarse. Her head is prone to burning so she wears a hat while outside.
Ruby’s eyes are also affected by albinism. We didn’t know if Ruby’s eyes were affected by her condition until we saw her in China. Since albinism is a very rare genetic condition, there isn’t a lot of information or research available. We knew Ruby’s eyes could be affected, but we were not prepared for how much. First, Ruby is nearsighted (which is very common). Her vision is 20/180. Legally blind is 20/200, so Ruby is close to being legally blind. Second, Ruby has nystagmus or dancing eyes. This is when eyes involuntarily move back and forth. Our doctors describe it like this…”Imagine you are sitting at your desk and reading on your computer. Now move your head from side to side scanning your surroundings. Now do it faster. See how hard it is to read on your computer. That is what it’s like for Ruby.” So this eye movement thing affects her daily. She gets tired more easily, takes longer for her to complete a task, harder for her to find something she has lost, etc. Ruby’s eyes have different speeds depending on her how she is feeling. If she is happy, content, comfortable then her eyes move slowly. When she is nervous, stressed, uncomfortable, in a new space then her eyes move faster. Third, Ruby has photophobia. This is where your eyes are very sensitive to light. Ruby is extremely sensitive to light. She wears transition lens glasses or sunglasses outside. We have our car windows tinted to the max the government will allow us due to her medical condition. Our doctors describe her sensitivity to light like this…”You’ve been in a dark movie theatre for a while and you step out the emergency exit into the most sunniest day. That moment when you feel blinded and you can’t see much. That is what it's like for Ruby.” Wow, right. So sunglasses, hats, and avoiding direct sun is crucial for her.
So, that's all related to Ruby’s condition of albinism. Ruby also has several other needs that have come to light over the last 3 years and these include low muscle tone due to spending most of her day in a crib while in the orphanage, reduced lung capacity due to her exposure to pollution while in China, and progressive hearing impairment (unsure of the cause). We manage these daily like everything else.
So our day to day life is like most people but with a few modifications. Ruby goes to school and they do a wonderful job accommodating her. She sits in the front of the class, needs large print, more time to complete tasks, etc. We spend more time inside than the average family. We do spend some time outside, we just avoid peak sun hours (10am to 3pm). When we do go outside, we lotion Ruby head to toe, wear sun protective clothing, hat, sunglasses, and find shade when we can. We avoid doing things that would make it hard for Ruby to see (like things far away) or we take zoomed in pictures and show them to her. When we do go to new places, we just take our time. Ruby needs time to adjust to a new environment. She needs us to guide her through the new space. Ruby loves to swim, so we usually go to the pool from 5pm to 8pm and just pack dinner. So in general, we do things just like everyone else. We just adjust what time of day we do things and make sure we have extra time.
Miggy: What are the biggest worries you face for Ruby? On the flip side, what are your hopes and dreams for her?
Stephanie: Oh, the worries. I worry about Ruby living on her own. I worry about her navigating a new space. She is very comfortable with places she knows like home, school, Target, etc. New spaces are overwhelming for her. With all her vision issues, it's hard for her to walk into a new restaurant and to get around all the tables to get to the bathroom or to just get to our seat. In the past this hasn't been an issue because I would just carry her. But now she is 5 years old and needs to walk. She is learning to use a long cane to help her get around. I worry about her getting lost and not being able to get back to where she needs to be. I worry about her being picked on at school. Will she be made fun of as she gets older? Will she continue to have friends?
My dreams are so big. I want her to have a full life. Right now she says she wants to be a mommy when she grows up. I so want her to get the opportunity to be a mommy. Other days she says she wants to be a doctor or teacher. I so want her to have the access to higher education. It will need to be modified to her needs, but she is so smart. I think that is sometimes the hardest part about having a child with a physical disability. Ruby is smart. Her intelligent is not affected by her condition, but she is treated by others as though her intellect is affected. I want her to be pushed because the more she is pushed the harder she tries and succeeds. I really just want her to be happy. Happy with herself and who she is. Happy with her life. Happy with her friends. Just Happy.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Stephanie: Ruby loves to eat. And when I mean eat, I mean really eat. When we first brought her home from China she hated the idea of throwing away food. She would eat until she was sick before she would put food in the trash. So when we went out to eat, we would have to ask the waiter to bring us an extra plate and to put Ruby’s food in front of me at the table. Then we would put some of the food on a separate plate and give it to Ruby. If we didn’t do this she would overeat or get very upset if she didn’t get a chance to finish her meal. We would have to hide the leftover food from Ruby. She still loves food and cleans her plate at every meal.
When we tell people Ruby has albinism, most people are shocked. The first thing they say is “But she doesn’t have red eyes.” In fact, we have had a few doctors even be shocked and say the same thing. It’s funny that what we hear and see on TV we just assume it's correct. Ruby does not have red eyes. People with albinism can sometimes have eyes that look red because sometimes you can see blood vessels in the back of their eyes. So no….people with albinism do not necessarily have red eyes and they are not possessed.
Miggy: As a mother who also has a child with visible differences I know that this can often present additional challenges. How can people best approach or respond to Ruby? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Stephanie: So this question is kind of hard for me to answer. On most days Ruby looks just like the rest of us. Due to her Asian descent, her albinism really just makes her skin and hair look like a blond Caucasian child. But if you spend any time with us you will notice Ruby is different. People with albinism want to be treated just like anyone else. I didn’t mention this before but in many cultures they believe that albinism is very bad. They believe that it's contagious. Sometimes people with albinism are portrayed as evil. Of course none of this is true. They are just normal people with less pigmentation.
If we are outside, Ruby does attract attention because she is usually dressed with her arms and legs covered and wearing a hat and sunglasses. People usually ask why she is dressed so much when it’s hot. Of course I go on to explain why. We also get stopped when Ruby is using her long cane. Ruby is very open and willing to talk to anyone. She is my social butterfly and just wants to be everyone's friend. So I think the best way to approach her is to ask her to you about something. Like ask her “Tell me about your special hat or glasses.” or “Tell me about your cane.” She loves to explain all her neat gadgets and gear. As Ruby gets older she will be using more devices to help her like magnifying glasses, binoculars, etc. This will continue to attract people's attention. We will continue to explain to Ruby why she uses all these devices, and we will explain to her that people are curious and just want to know more about her.
I think the worst thing people do is just look and stare. Ruby doesn’t notice the staring because over vision issues, but the rest of her family does notice. If you or your child has a question, just come and ask us. Don’t shush your child or keep staring or create your own explanation. We are more than willing to answer anyones question.
Miggy: What is the biggest lesson you’ve learned since becoming Ruby's mom?
Stephanie: Stop stressing, life is too short. I used to be a very uptight, stressed out, plan it all out, everything has to be perfect kind of mom. Then Ruby came around and everything became unpredictable. Now I still get stressed sometimes and revert back to the old me. But in general, I’m a much easier going mom now. Life is too short to be stressed out all the time. Life is too short to be worried all the time. Ruby has made my life better. Ruby has made my family's life better. We are learning to enjoy life. To take one day at a time. To have some fun. To relax more.
When we started the adoption process, we just wanted another daughter. We wanted to complete our family. Not only did we get another daughter, we got a new way of living. We love our new way of living. Each day is unpredictable, but as a family we can navigate anything that comes our way. We are so happy to have Ruby in our lives.
Albinism: If you want to know more about albinism, please visit www.albinism.org.
Adoption: We loved our adoption agency. If you are interested in adoption, please visit the agency we used: www.ccaifamily.org. We highly recommend them. And if you are interested in following our journey you can follow me on instagram: @stephperkins05.
Stephanie, thank you so much! This was very informative for me, and I'm sure very informative for so many people as I now realize how little I knew about Albinism! I didn't realize that Albinism could affect your hair and eyes. I also love that you gave some specific tips about how people can approach Ruby in a genuine and kind way. Asking questions about tools is actually a brilliant way for your child to ask a person about their differences. And I agree, staring really is the worst. And lastly I like what you said about how much we assume what is being portrayed on TV is correct--especially when it's portrayed over and over. I admit, I too thought all people with Albinism had red eyes. Again, thank you so much for sharing your story and your sweet Ruby with us. Once again I'm reminded about the importance of reserving judgment. The more you know...
Anyone else learn a lot more about Albinism than they previously knew? So grateful for the many families who share their lives and experiences with us. I couldn't do this with out all of my fellow special needs families out there. Thank you. And if you would like to do a spotlight please email me at thislittlemiggy at gmail dot com.
Have a fantastic weekend!