Irish Stew

This family is considered to be "special needs." At one time, several years ago when we first started everything, I was against special needs. I thought it was a nice reference to huge medical issues that would require extensive care for the remainder of someone's life.

I suppose this could be true for any child, whether adopted or not. And every child needs love, attention, medical care and extra help when needed. In 2007, we started considering Caleb's (Wu's) file, and I then realized that a cleft lip and palate would be navigable for our family since I was a pediatric nurse. Oh, how much I have learned since then.

I know better about special needs. In fact, we are open to this, being that now three of our children have them. The boys were both born with cleft lip and palate, and Ellie has hearing loss. Do I know how to handle all of these conditions and the potential surgeries/therapies/hearing aids/dental work that we will face in the years to come? No way. Can we learn? Sure.

We have learned a ton about cleft lip and palate and yet, there is still so much that I don't know. I still feel like a doof when I visit with specialists such as pediatric otolaryngologists, pedondists, and prosthedontists. I don't know what these all mean and I'm not sure of their specific job duties, but they work very hard and have made many changes in my sons' lives.

We are seeing Asher advance in his speech that at three, he is mostly intelligible to those around him. His preschool teacher says he does very well in school. Of course, Ash was born with a cleft on only one side of his mouth, while Caleb had two. The first thing I learned: there are big differences between the two. Caleb, either due to his cleft, his high palate and overall mouth structure, or just patterns of learning to speak three years ago, have caused him to have a pretty significant speech disability. He is about 40-45% intelligible to the average listener and about 90% intelligible to us, since we spend a lot of time with him. This year, he has a great speech therapist through the schools that we see once a week. Last week, she gave me an updated goal sheet saying that he had improved approximately 7% since the beginning of the school year. I thought that was awesome! However, his current preschool is causing some difficulties because he is new this year and no one there understands him. Top it off with being the only Asian kid in the class and kids are starting to tell him that they don't speak his language (this is where I acknowledge that pain in my chest...it's my heart breaking...when I hear him tell me these things). He's five. I'm so not ready to see him move into those stages of life where he gets hurt because of misunderstandings. I want to protect him from that but I don't want to be a helicopter parent. He has worked so hard at speech for years and the progress is so slow, but it's there.

Alternatively, we will have a new set of things to learn about when Ellie comes home. Besides having hearing loss, she was born with a condition called microtia, in which the outer aspects of her ears were malformed. It's not very noticeable in pictures, although I'm sure it will be when we meet face to face. Microtia typically affects only one ear in 90% of cases, although in our situation, Ellie's is bilateral. Microtia is almost always accompanied by aural atresia, which is condition that results in absence of the ear canal, hence the hearing loss. Without knowing the extent of her hearing loss, she may need quite a bit of hearing augmentation.

It doesn't change everything, but I've started to take more sign language. We have used sign for years with the boys, as it helps with some of the language transition. We also now use it with Caleb to help him get his point across (although he doesn't really like it because he would rather just talk and be completely understood). Right now, I am close to finishing my most current sign language class--we just took the final and the instructor told us we learn 800 more signs this term. Plus, we have been attending a church lately that offers sign interpreted services.

What does this all mean? I don't know. I'm probably just rambling to say that our kids are not perfect and they have issues with hearing and talking that we will get through. Or, maybe so that if you see us on the street one day, you will see how well-adjusted and intelligible everyone seems (just kidding). I'm more just saying that, as many issues, tests, treatments and therapies that we do, I wouldn't change it for the world. I think back to the days when I would not have considered special needs because I was afraid. It was really only a lack of knowledge. Now, I can say that I'm glad I took the plunge because when I see these three little faces, I know it is worth it.