Tuesday, February 26, 2008


A bit about Kyle. When I was pregnant with him, we had never even heard of Fragile X Syndrome. The pregnancy was quite normal, as was the delivery. Then it all began. He had an AWFUL time learning how to nurse; if he had been my first child, I would have given up. He was a very mild mannered baby---so sweet, and he slept a lot! I don't remember the exact times, but all of his development was delayed.

At around 15 months old, I temporarily switched doctors because I was concerned about his development. Everyone around me told me that "he was fine" "he's a boy" "he'll grow out of it," etc. This doctor that I switched to was the first to say that yes, there could be something wrong with my baby. But he did so with his back turned to me while filling out paperwork....saying things like, "Yeah, we'll check to see if he has an extra chromosome." I was devastated. We didn't end up going to the hospital (Riley Children's Hospital) at that time.

We didn't go until Kyle was almost 3. Our original doctor was the one that suspected Fragile X. At this time, Matt was almost one. I'm guessing he suspected it after he delivered Matt; one look at Matt's ears (which he has grown into quite nicely :) said it all. But he was very gentle on delivering the news that Kyle should be tested for FX.

He's been in a Moderate Mentally Handicapped class since kindergarten. He had the same teacher for K-5 (whom I adored), and a wonderful teacher for 6-8th grade. He was mainstreamed a little. I was so worried about high school; I was afraid he would be totally isolated from the gen. ed. population. Well, he is for classes, but they have a great "Best Buddies" program. Kids from the gen. ed. sign up to be a buddy with someone in the special ed. They get together with their buddy at least once a month (I never thought I would see Kyle get into the car of a teenager). They also get together as a whole group once a month, either at the school or "somewhere." For Halloween, one of the girls hosted an outdoor Halloween party--cookout, hayride, etc. It was the FIRST time that John and I watched Kyle get out of our van and head off into a group of teenagers....how awesome! Kyle is very shy, so this was an amazing event.

Kyle's first experience fishing....loved it!

It's hard to recap 16 years without boring the reader, so I'll sum it up. I'm so proud of him!!!! He makes me laugh everyday, he doesn't like sadness, he's so sweet, kind, loving......the list could go on. It's not to say that there are never difficult times; that list could also go on also. But the good times far outweigh the difficult times.

Kyle's Interests: A life-long Thomas the Tank Engine Fan, Buses and their numbers, the pool, Pixar movies, Transformers, NASCAR (until a couple of years ago, I couldn't tell you the name of a single driver.....now I know many--along with their numbers :), would like to go camping, bowling, and game shows.


Kristiem10 said...

What a handsome young man! We have Thomas the Tank Engine lovers over here, too.

I can't wait to read the rest of your blog. Thanks for visiting my blog.

FXSmom said...

I'm intrigued by your buddies program. One of my old high school teachers, and good friends, is the principal of the high school. If he is still there when Matt gets there I may bring it to his attention to maybe start such a thing. Our town is incredibly supportive of its special needs citizens and it may help to continue that tradition.

Jen said...

Check out bestbuddies.org

It's a great international organization. The student president of ours is a wonderful senior. She plans on majoring in special education.

Mrs. Smith said...

I just found your blog after noticing you commented on mine. Wow! 3 kids with FX. You are so wonderful to keep having kids. I'm terrified now that I know about my premutation. I fear so much for my son's future, but I have to remember, this is only life now. In his "next life" it won't matter, right?? What grade do you teach?