Christian Homes And Special Kids

    When Corwin was born in April of 1989, we were delighted! We had been married nearly eight years and had almost given up hope of ever having children, and being a good mother was my career goal. Right away I realized it wasn't going to be as easy as I'd thought. Corey was a very fussy baby. I had very little experience with babies. The doctor assured me he was fine, that he was just colicky. I seemed to spend all his waking hours trying to keep him from crying. He liked having a bath so he got lots of them. The crying did ease up after awhile. His early development was within the range of normal, though on the slow end of the scale. Even as an infant he seemed to focus intently on certain things, like ceiling fans, and exit signs. He also would often refuse to make eye contact, especially with strangers, but even with us at times. I noticed these things but didn't really worry about it at that point. I was in love with being a mom. Corey seemed normal for the most part and besides, I had no one to compare him to.

    When Corey was about 9 months old, we moved to Tennessee. Soon after that, I got a job at a daycare center. Now Corey was with lots of other kids. He got sick more often and got lots of ear infections. I also noticed his development seemed a lot slower than the other kids. After a few months I started leaving him home with his daddy and working shorter hours. His development seemed to pick up after that and he didn't get sick so much either. We assumed things were going along fine. He learned to walk at about 16 months. His speech development was very slow. People told us he didn't feel a need to talk because I always took care of his needs so he didn't have to express himself. I instinctively knew that wasn't it. I knew Corey could understand when I spoke to him. He loved to be read to from a very young age. He did eventually come up with sounds that we were able to figure out the meanings of. For instance, "ish" ment this, "aw i " ment broccoli, "dee" ment Dapper Dan. Words like Mamma and Daddy were not in his vocabulary for a long time. When he wanted something done he would grab our hands and put them on whatever he wanted, i.e. on the refrigerator door, or on a book etc. He was very fascinated with textures, loved to play in the rocks in front of our apartment. Buttons, knobs, embroidery, etc. all had to be touched, preferably with wet fingers.

    We had his speech and hearing evaluated when he was two and a half. At that point they said therapy wasn't needed.

J    ust after he turned three, we had our second child, a little girl, that we named Alanna. Corey paid very little attention to the baby till she was old enough to grab his things. When that happened he'd yell, but never attempted to hurt her or take things back. They also started to enjoy playing together.

    His vocabulary improved, but it was still different than normal. He'd repeat the same words or phrases over and over, and seemed to blur a whole sentence into one word. He always seemed to be making some sort of sound, droning or a monotone humming. (He still does these things at age 14, though his vocabulary is probably close to normal).

    When he was three and a half, we took him for an all around evaluation, because we were still concerned about his lack of normal speech. We found out that he was also behind in both his large and small motor skills. Yet he already knew all his colors, shapes, and most of his numbers and letters (he couldn't say them, but he could point). The evaluation team, recommended that we seek genetics testing. They suspected Fragile X Syndrome. It was the first time I'd ever heard that term. We took him for genetics testing, which was traumatic anyway since Corey hated to have anyone besides family touch him. He screamed through the whole thing, though most of it was not painful. Anyway, the official results were "inconclusive" and they wanted to do more testing. They were sure he had Fragile X. We declined, and have never been back. I guess we went through denial for awhile. I did a lot of research on my own (which I highly recommend). It was easier to deal with a book, than with a doctor telling me that my precious boy would never be normal. There was very little information available about Fragile X then. I read about Autism, and that was very helpful, and I discovered that Fragile X is considered to be on the Autism scale.

    I went through fairly long periods of just enjoying my family as it was. Corey did progress, and I guess I simply got used to him the way he was. He has lots of good qualities. He is gentle, affectionate, loves to wrestle with his daddy, to snuggle up and hear story, after story after story, and he has a great memory. When he was about six he was very interested in birds, and learned to Identify, about 50 different kinds. About this time he also learned all the states in the United States. He literally giggled his way through them. He thought the names of the states sounded very funny. He has never forgotten any of the things he learned. though he has never been able to make a tune and therefore cannot sing, he loves to hear us sing and has memorized many, many hymns, and their page numbers. For example, just yesterday a friend called wanting to know the name of a particular hymn that she could only remember the chorus to. I couldn't remember it right off either, but I knew it was one of Coreys' favorites, so I went and asked him, and sure enough, he knew it right away, and the page number too. He's memorized lots of scripture verses, as well as several whole chapters.

    Among the more difficult parts of raising Corey was potty training. It took till he was about eight years old. Even now I keep a plastic sheet on his bed, because he still has an occasional accident at night. He also does have days, and sometimes several days in a row, where he is in a constant bad mood, and nothing I do pleases him. Finding an appropriate, way to discipline him, was a challenge. What works for most kids doesn't work with him. I can't reason with him the same way, I can with my daughter. So it's been trial and error, sometimes, we only made his behavior worse. We finally discovered that remaining very calm ourselves, no matter how upset he got, works the best, so we've learned to be firm, but calm.

    He often repeats the same thing over and over, which can be tiring, and annoying. Its worse if the phrase he is repeating is an inappropriate one. That can be embarrassing when in public. Fortunately he doesn't know any swear words, but bathroom type words, can be plenty bad enough.

    Before I close I want to say a word about my daughter. She has never been tested for Fragile X, and seems perfectly normal in most ways, but she does have some of the physical features of Fragile X, ie, the narrow face, high arched palette, and large protruding ears. none of these are as extreme as in her brother. (Neither child looks odd, they are both attractive children.) She also is very shy, and doesn't feel comfortable in group situations, especially if she is expected to participate. I discovered in my reading that often girls with Fragile X have only these symptoms. I have these symptoms to a lesser degree myself.

    A couple of years ago I did finally find a book specifically about Fragile X Syndrome. I highly recommend it! It is very easy to understand, and is very helpful. It was written by parents, as well as the Doctors of kids with Fragile X. The title is, "Children With Fragile X Syndrome... A Parents Guide." Edited by Jayne Dixon Weber. Published by Woodbine House, Inc., 6510 Bells Mill Road, Bethesda, MD 20817-1636. 800-843-7323. http://www.woodbinehouse.com

    I hope my account has been helpful. It's impossible to describe the joy our son has brought us. We have learned so much from him. I can't imagine life without him. He turns 14 next week. He is very much looking forward to his birthday.

Keep us in your prayers as we continue life with our precious son Corey.

Sincerely,

The Monks Family,

Gerald, Sharon, Corey, and Alanna