If the word orphanage conjures up images of a Charles Dickens novel, you would be shocked at the sight of the place K spent the last 5 years. Four stories. A huge indoor playground with skylights so natural light can get in. It feels spacious. A whole floor just for the boys, another floor for the girls. And then the top floor for those with special needs. Regardless of the “niceness” of a building, it is still a place that houses children that need be in a home with a family.
We visited the second floor where the boys lived. There was a cute little classroom for the kids. When we asked to see K’s room, the ladies just looked at each other and said it would be too difficult for Kylah to go back and see her friends. I asked if I could go up alone and see it. I wanted to take a few pictures for K and I wanted to have a little more understanding of where she had been. The women talked about it for a few minutes and told us we could all go upstairs together.
To our surprise, we went past the girls floor on up to the top floor. We walked in and saw a room filled with cribs. Children of all ages were dressed in white and lying in these beds. Most of the kids we saw were non-verbal and severely disabled. Only two kids were moving around the room, both early teens. We were told one of these girls was K’s best friend. She couldn’t speak, and began to wail as the ladies told her K had come to say goodbye. There are no words to describe the sadness in that young girl’s eyes. It is hard to walk out of an orphanage and leave so many behind.
I am no stranger to children with severe special needs. We’ve worked with them in orphanages in China. We’ve visited them in Ethiopia. But this is the place my daughter had called home and it was heart-wrenching. Those few minutes in her old room gave us some much needed insight into some discrepancies we had discovered in K’s behavior and what we had been told about her needs.
Originally we were told of five concerns:
K is 6.5 and not potty trained. —> They said she had absolutely no control over her bladder or bowels. With that in mind, I’d say it is pretty remarkable that she is in full swing learning to use the toilet and even taking herself at times. K entered the orphanage at just over a year old. And for Chinese children, that is too old to not be potty trained. So something was amiss and in the chaos of orphanage life, I guess she never had a chance to learn.
She is quiet and shy and has some language difficulties (only able to speak in short simple toddler-like sentences) —> In the first few days, we were concerned with her seeming lack of language skills. We just n From the beginning, Hanissa found a way to communicate. She was determined to be heard and understood. Kylah didn’t seem interested in communicating on any level. But she had lungs to scream and made strange sounds to show her frustration. After a few days, we heard words. Then we heard sentences. Now we hear paragraphs. All in Chinese, but it is communication. And, she has recently decided that she wants to talk with us not just at us. HUGE, HUGE, HUGE progress is being made although most onlookers can’t see it yet.
She only started a completely solid diet 4 months prior to our arrival. —> This has been tough. She longs for food, but balks at anything chunkier than applesauce. We’ve been doing a lot of research and she is learning to chew and use her tongue correctly. Along with serving foods we know are easier for her, we have something challenging at every meal. Yes, it is a lot of work. Yes, there are tears. Yes, her jaw hurts sometimes. But, little by little, she is moving forward.
Her cognitive development is behind. —> We started school last week. (She was less than thrilled.) It would seem that she has never been required to do much of anything. The 3, 4, and 5 year old books were too complicated for her (and not because of language). So we moved farther back. Way, way back to about 18 months. She is learning the basics. Muscle control. Cause and effect. Pleasure and pain sensations. Was it the room she was in at the orphanage? Were there too many needy children when she was that age? I don’t know. She has gaps that need to be filled. So however far back we need to go, for how ever long, that is what we will do. The good news is that she is learning. She is moving fast in some areas like matching colors, learning color names, holding a pencil, recognizing shapes, etc… And, her recognition of English words is multiplying.
She has emotional issues —> This is probably the hardest struggle. When you see a child with an obvious physical disability, you make allowances for them. Many assume there may be other “issues” as well. When you see a perfectly healthy 6 year who behaves like she is 3 or younger, it is a shock. People stare and they are uncomfortable with it. Some strangers give disapproving glances at the parent with the obviously spoiled child. But others, walk over place a hand on me and speak words of peace, praying of me. Need examples? We have been the family with a child who screams for no other reason than she is overwhelmed with the number of people in a small space. Or the family checking out at a store with a child that just melts to the floor like her body has turned to jello, but her lungs are fully functioning because she doesn’t understand the wait. We are the family with a girl who is scared and just wants the security of your arms, but weighs 55 lbs. We are the parents who can’t leave their 6 year old alone for even ten seconds because she might hurt herself, on purpose. And we are the mom and dad who crawl into bed and just hold our little one as she sobs for long periods. But…again, every day brings improvement. We are trying to model better responses. Trying to get her to use words instead of emotional outbursts to get her needs met. Baby steps.
So much of the behavior we were seeing in Kylah we saw repeated in this room. Our dilemma now is to discover what is truly her need and what has been learned and conditioned.
Some may say this is too much of her story shared publicly. I admit, it is a struggle to know just how much to say and what to keep just in the family. The truth is my daughter doesn’t live her life only in the safety of our home. She is out in public learning to mix with people. While this post will probably never influence the people I meet at the grocery store, maybe her story will make a small difference in the hearts of friends and family. Maybe someone reading this will offer a word of encouragement to another family parenting children from tough places. Or maybe it will just cause someone to realize they don’t know the whole story in regards to a child’s behavior.
I don’t share this to get pity. Pity is something we don’t need. What I’d love to have from you is prayer. Just keep our names before the throne of Grace. Ask for mercy, wisdom, grace, peace, and yes, even rest, to fill our home. Sometimes it feels overwhelming, but we are not in despair. God called us to this journey. And while I may often doubt my ability to succeed, I never doubt His.
With all her needs, all her struggles, Kylah has the sweetest temperament. And there is a spark growing in her. It is as if a part of her has been hidden away behind a heavy gate and thick walls. While we are still searching for the right key, we are beginning to see cracks in the wall. She is beginning to hunger for knowledge, for human interaction, for more of just about everything. Wait for it. The gate will be opened and regardless of what we find on the other side, it will be beautiful because it will be the real her. Walking with a child through sorrow, pain, and fear and seeing them begin to emerge whole on the other side brings the greatest kind of joy and contentment. This is what we work towards. It is worth every tear, every outburst, every smile, every late night.
Disclaimer: Please do not think that every day is a drudgery. There are many beautiful moments happening in our home every day since the arrival of our newest daughter. I’ve mentioned some of the struggles, but that is only part of the story. Stay tuned to learn about some of the every day joy.