Iris’s Special Need
Many of you have known that we were adopting, but you may not be aware that Iris is special needs with “bilateral upper limb deficiency”. In simpler terms, she is missing her left arm completely at the shoulder and about half of her right arm, as you can see from the photo posted. She does have one finger, although we do not know the extent to which she can bend it or use it. She is healthy and normal otherwise, according to all of her medical and developmental reports. According to our pediatrician, Iris’s upper limb deficiency is most likely due to amniotic banding in the womb. This is a condition that can occur very early in development in the womb where the fibrous bands of the amniotic sac constrict causing amputation or growth restriction of limbs or digits. When we bring Iris back home, she will receive treatment at Scottish Rite Children’s hospital for therapy and prostheses. Most children with congenital upper limb deficiencies actually end up not using prostheses because they are typically much more proficient without them, using their feet and toes and other ways of doing things, instead. However, it will be up to Iris to decide what works best for her.
Why? Isn't that a huge thing to take on?
Most of our family and friends that we have talked to about this adoption have been supportive, however others have questioned it and cannot fathom why we would willingly take on a child with a special need that is “seemingly” this extreme. First of all, although Iris’s condition may seem extreme to some, what most people do not realize is that kids with conditions such as these are really amazing and can do just about anything they want to. They just do it differently. In the case of congenital amputations, these children never know the use of the missing limb(s), so they adapt from birth learning to do everything in a different way. Yes, they need lots of encouragement and some extra support to learn to do particular things and to figure out how to accomplish certain tasks, but ultimately, they can take care of themselves and accomplish whatever they set their mind to. They can even be musicians or athletes. Sound incredible? Check out the following links of these musicians and athletes with upper limb deficiencies.
Pilot, pianist, Tae Kwon Do
We feel that the biggest challenges that we will face with Iris will not be physical, but emotional. We know there will be people and kids that will stare, those that will be cruel, and that Iris will face many emotional difficulties because of her obvious physical difference. Kyle and I feel and pray that we can give Iris the love and emotional support that she will need to deal with these things and to adjust as she grows up.
Before we decided to adopt a child with upper limb deficiencies we followed other children with similar conditions, talked to parents of these kids, and educated ourselves on the therapeutic needs and prosthetic options. We did not jump into this blindly. Kyle and I had been talking about adopting for a long time…..even before Jena was born. We felt a special pull towards China….simply that our child would be there. We decided that if we were going to adopt, we wanted to adopt a little girl, close in age to Jena. It is our hope that Jena and Iris will grow up together as best friends and will be very close.
We also decided that if we were going to adopt, that we would adopt a child with some sort of special need that would make that child less likely to be adopted, but with a special need that we felt that we could emotionally and physically handle and properly parent and provide for. As many of you know, Kyle’s family is quite familiar with special needs with Kyle’s little brother, Ryan, being mentally disabled due to a stroke as a toddler. Kyle's parents, Bonnie and Don, are highly involved with ARC of Denton County and with advocating for and working with special needs people. Those of you who have met them know that they are very admirable and absolutely inspirational people. In addition, many of you know about my daughter Faith’s involvement with working with special needs people and that she is in college right now to become a special education teacher. So, taking on a “special need” was probably not near as intimidating to Kyle and I as it would be to some others.
Originally, we had not considered adopting a child with upper limb deficiencies. We were thinking more along the lines of adopting a child with clubbed feet, hearing loss or microtia, or a repaired or mild meningocele. Then, when we were still in the exploring stage of adoption and had not yet put in an application, we saw a profile of a baby girl in China that was up for adoption that was missing both arms at the shoulders. She absolutely tugged at our hearts. That was when we begin to research children with bilateral upper limb deficiencies and began to feel a pull in that direction. We were not yet ready to adopt at that point, but inquired about that particular little girl, anyway, and she already had a family looking at her. She did end up getting adopted and I follow her family blog to see how she is doing. She is thriving and it is encouraging to see her progress and how she accomplishes everything.
When We Found Iris
About a year later, when were ready to begin the adoption process, we put in our waiting child (special needs) application and were able to view Iris’s profile and information just a month later. After seeing hundreds of other profiles for children up for adoption, we felt strongly that this was our little girl. Iris’s Chinese name is Li Yu Qing and below is the very first photos of her and some of the info that we were given about her initially:
Name: Li Yu Qing
1) Experience entering the orphanage
On June 22, 2010, she was abandoned in Pingdingshan City Lizhuang Xin Village at the entrance to #72 building. The Pingdingshan City Public Security Bureau Guangming Road Police Station delivered her to the Pingdingshan City Social Welfare Institute.
2) Condition upon entering the institute
When Li Yu Qing had just entered the institute, her skin looked like she had newborn jaundice. She was congenitally missing her left arm, and her right arm was congenitally malformed (she had an upper arm, but it was short, and her forearm was very little. She had a bit of an undeveloped finger, bent at a 70º to 90º angle. Her finger can extend). Her umbilical cord had not fallen off, but it was already dry. She had probably born a few days before. The clothing she wore looked like she was from the countryside – they were tattered and worn. She carried on her person a plastic bag that carried a few Second Stage Xuehua milk formulas and a milk bottle. She exhibited symptoms of newborn jaundice. She was 42 cm long, weighed 2.52 kg, head circumference 34 cm, and chest circumference 33 cm.
Condition of Physical and Mental Development
Yu Qing is a little princess who lets people love her. Very often she is relatively calm. She is very friendly to people. She loves to smile. When she was just two months old, Yu Qing made “ge ge” laughing noises. Many people find her smile infectious
Yu Qing is name given to her from a loving mother on the “Yao Lan Wang” (a Chinese website/forum for expectant mothers/mothers), and the meaning is, “The rain has passed and the skies are clear, the rainbow has appeared. Although you’ve been abandoned, believe a beautiful life will come.”
Yu Qing’s growth and development is basically in step with other babies her age. While lying on her belly, Yu Qing can lift her head. While lying on her belly, she is already trying to roll over. In regards to her language, she happily smiles at you and makes “yi ya” noises. When Yu Qing sees an enthusiastic nanny, she will smile at her on her own volition. Her eyes can nimbly follow an object or person on her own volition. Yu Qing likes people to keep her company. She likes relatively gentle, leisurely music.
Yu Qing likes to be alone, and she likes bustle and noise. She likes adults to accompany her. She loves to play with other children. She loves for adults to take her outside to play. Yu Qing seems like she can understand what adults say. When adults praise her, she will smile. When they scold her, she will appear as if she’s been wronged.
Yu Qing is congenitally handicapped, and as she slowly grows up, she will gradually discover that she is different from other people and face many problems or difficulties…
We all together wish: Yu Qing definitely develops happily and healthily, and has a complete and beautiful life! We together wait and wish – for our beautiful, adorable little princess – Yu Qing.
We have additional information and have received updates on Iris. She is no longer in the orphanage, but has been with a foster family since she was four months old; with a foster mother, foster father, and foster brother who is 10 years old. She appears to be doing very well. We have been in the adoption process of her since she was eight months old, but she will probably be at least 18 months old before we are able to pick her up.
The reason we chose the name Iris is due to the meaning behind her Chinese name “Li Yu Qing”. As stated above, it means “the rain has passed and the skies have cleared; the rainbow has appeared”. The name “Iris” means “rainbow”. “Iris” was perfect because it keeps the same meaning as her Chinese name. Additionally, there is a song entitled “Iris” by the Goo Goo Dolls that has very special meaning and personal significance to mine and Kyle’s relationship. So, the name “Iris” is special to us for more than one reason.