Quick Outing

This evening, we brought a vehicle that belongs to our friends to the airport (about 45 minutes away). They're coming back tonight, and this method saves them money on parking. We've done this a few other times, and we bring the boys with us. Parking on the top level allows the boys to do a little sight seeing. Well, tonight it was 25 degrees, wind blowing, with a light snow. Matt got right in our van, but Kyle stayed out to enjoy the view. John blinked the lights at him a few times, but he would pretend not to notice (just did a quick side glance). One might think that he was intently watching the planes. Nope, he was watching the buses below us. After about 5 minutes, I got out and suggested that perhaps it was a little too cold out for this. Fortunately, the two buses he was gazing at were pulling away.

About half way home, we stopped for a bite to eat. Normally, the boys enjoy eating out. This evening, we decided to try something that was new to them--White Castle. As soon as we pulled in, Kyle started announcing, "We'll never make it home in time!" That's his current most used phrase when we are somewhere he doesn't want to be. This continued periodically throughout our stay. Matt was ready for the adventure, although he kept his hands fashioned like a visor above his eyes (quite common for him). They both seemed to enjoy the food--it was a quick dinner. As we were leaving, Kyle said, "White Castle's not bad, not bad at all." When I asked Matt about it, he responded with one of his favorite phrases, "I don't know," but his restrained smile while he was eating told me that he really liked it (he likes just about any food). After we got home, Kyle, who has a way with words, said very eloquently, "That was a very good White Castle, I say. It was very delightful!" Yeah right Kyle, you were just glad to be home.

Sleeping Schedule

I've read and heard about sleep problems that some children with Fragile X have. Well, with reservation, I'm going to share the sleep habits of my boys (I'll talk about Kyle and Matt's...Evan's is a little different).

From the day Kyle was born, he has loved sleeping. As a baby, one might say that he slept too much. He quickly developed a routine. I remember an incident when he was 18 months old; he had crawled (he couldn't walk yet) over to the bottom of the stairs at 8:02 and waited for me to bring him up to bed (he usually went to bed at 8). When Matt was born, he quickly adapted to the routine that Kyle was on. Throughout their younger years (up until about 2 years ago), they would go to bed at the same time. That also meant that they would get up at the same time....6:00. If we were out past their bedtime (just a few minutes past), Kyle would tell us that it was past his bedtime.

Now it's funny. They still like their routine, so it's a big deal when they deviate from it a little. We joke with Kyle about pulling a late nighter on a weekend night. He says that he will stay up to 10 or 11, but he is usually brushing his teeth at 9 and heading off to bed. On very rare occasions, he'll stay up til 10, like if there is a NASCAR race on. Within the last year, Matt has started staying up just a little later than Kyle on the weekends, but there is always an announcement made about it...it's funny. He usually stays up to watch something like The Iron Chef. They've also learned how to sleep in a little when they don't have school....that is they'll sleep in till about 7:30 :) ~~~They like digital clocks~~~

Ear Infection

Evan had been acting a little different the past few days; I thought that maybe he was getting the cold that John has. He had a fever Thursday night and on Friday off and on. It wasn't until late Friday afternoon that he started tugging on his ear. Around 5:30 we went to the clinic (too late to go to his doctor), and they said he had an ear infection. By that time, he was looking so miserably sick. I think this is his third or fourth ear infection. Kyle is the only one of my three older kids who had tubes.

New word: One of his favorite foods is the YoBaby Yogurt; he eats it just about everyday. There is a picture of a baby on each container. If he sees it when I open the fridge, he points to it and clearly says "baby." He hasn't signed or said all done since the one time :(

Toddler Time canceled :(

Today, Evan and I were supposed to have gone to Toddler Time at our library (the first of three). I was so looking forward to it because Evan doesn't have the opportunity to interact with others his age. We went to three other sessions over the summer, and he loved it. But our weather turned nasty on us again, so it was canceled. It started out as as freezing rain/sleet, and then went to huge snow flakes. I'm ready for Spring!

The good news....When Evan was done eating tonight, he signed "done," and said, "All done." Of course, it was probably said in a way that only a mother would recognize, but it was there. And the signing was perfect! We've been working on it for at least 4 months, but this was the first time that he did it with absolutely no prompting; he still had food left, but he didn't want to eat anymore. Oh, I hope it continues!

Bowling

We all went bowling this evening. Chelsey came along with us, although she did not want to bowl. It worked out well because Evan was a bit of a handful. He was whiny, and nothing seemed to please him. So, Chelsey sat in the van with him while he watched his Little Einsteins movie. Before I had this van with the DVD player, I had always said that I didn't want one; the kids would miss out on what was going on around them. Well, I still kind of feel that way, but boy, it sure does come in handy!

We bowled two games; I don't remember the scores of the first one, but for the second one, the boys both bowled in the 60s, I was in the 80s, and John was in the 120s. Kyle and Matt had bowled in Special Olympics for a few seasons, but they haven't participated in a couple of years. Matt finally got to the point where he wasn't crying during practices, but receiving his ribbon or medal was absolutely torturous (but he was happy to have it the moment we would leave the building). I'll probably sign them up for it again this fall.

Matt

Matt is our 14 year old. He was almost a year old when we got the diagnosis for Kyle. We've never even had Matt tested; I didn't want to put him through the needle stick (he's never handled those well).

Matt's motor development was right on target. That year after Kyle was diagnosed is kind of a blur, so unfortunately, I don't remember specifics.

He is sooooooo painfully shy. He's a motor-mouth at home, but at school, he says very little. This is a child that has been potty-trained since he was 3 (through day and night), but was still having occasional accidents last year at school. He just won't tell anyone that he needs to go. They've tried various strategies. Their strategy now, is to have set times throughout the day when he uses the restroom (the private one). It's working so far.

He has been in a Mild program since kindergarten, although he did do half day in a regular K, and the other half in the MI room. There is a boy that has been so good for him for the past several years. He is in the general ed., but I think he was pulled out occasionally due to a learning disability. He is the one person at school that Matt will actually "talk" to. During our IEPs, we actually discuss trying to ensure that Matt's with him for his mainstream classes (such as art, P.E. (he doesn't participate, mostly watches), social studies, science). I'm very thankful for this friend--a heart of gold!

Next year is going to be a rough. We've already had one IEP meeting, but I've asked for another. Because of the "No Child Left Behind" act, high schools can't have a self-contained MI room because the MI teachers aren't considered "highly qualified." This means that the MI students are expected to be in gen. ed. classes. Matt can not do that work. They have some classes that are taught by the gen. ed. teachers that are for MI, emotionally handicapped students, and LD students, but only a few. So basically our option is to put him in the MO room when there is nowhere else for him to go. The MO teacher wasn't at this meeting. It's just so hard....the gen. ed. classrooms are definitely above his abilities, but I like him being in that type of setting. Although he would never say a word in those classes, he would be observing the social aspect. He's got great behavior, but put him in a situation where things might get silly, and he can get very silly. Maybe I'm just being unrealistic. I don't know.

Matt's a great kid. At times it seems like the Fragile X has him trapped. It's like I can see his desire to "be like everyone else."

Matt's interests: Cooking (he loves watching cooking shows), making lists, the pool, NASCAR, golf (very good on the PS2...needs some work on the real greens), helping dad outside, watching COPS (tells our dogs to "get on the ground!), bowling, and eating!


Check out www.bestbuddies.org It's a great international program that Kyle is involved with. I hope that Matt will be involved next year, but it will take a lot of convincing.

The National Anthem

Chelsey sang the National Anthem at the b-ball game two nights ago.......absolutely beautiful! She certainly did not get her singing talent from me.

********There Chel, I've admitted it!

Kyle

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.

Maybe early potty training???

For the past couple of weeks, I've noticed that if I left Evan alone without a diaper on for even a minute, he would pee. Last night when I was getting things ready for his bath, he took off his diaper, stood there, looked down, and went pee. After I took him out of the bath, he stood there, look down, and seemed to be pushing as if he was going to have a bowel movement. And sure enough, out came a very small amount of pee. I'm tempted to get a potty chair for him and see what happens. He definitely has an interest in what happens down there!

Evan's new word (going on 3 days): "diaper" (said in a high-pitched voice)

Senior Night

Chelsey and me (photo courtesy of Kyle)

Last night, Chelsey had "Senior Night" at her school during the basketball game (between junior varsity and varsity games). Seniors who play basketball, do cheerleading, or are on the dance team were recognized. The parents got to escort their child onto center court while their names and future plans were being announced. So hard to believe that this is her last year of high school and the fact that there are only three months of school left!

Don't hide Chel!

All of us went for the special night...even Evan who had only an hour long nap. We got there at the beginning of the JV game and got to see Chelsey and the dance team do their thing at half-time; an excellent performance! Near the end of that game, the parents had to go to the lower level (we were sitting on the upper level) to get ready to escort their child. While we're waiting, I peaked up to the upper level where Matt and Kyle were sitting. I see Kyle standing up (as if he's looking for us--which he was), and Matt's hands twisting as fast as could be. (He's never done the "up and down" flap---he keeps his arms at his side and twist his wrists). That meant one thing---he had to go to the bathroom. So I rushed up there (there was still a minute left in the game) and brought him to a bathroom. There is no way he would have went looking for one on his own. Of course, there were people sitting in that area; they were probably clueless as to why my 5'7" son was twisting his hands so desperately.




It's great that our boys are now able to sit through a basketball game, and kind of enjoy it. Matt decided to go home with John and Evan (very tired) after the senior night part, but Kyle stayed with me. When they were younger, the sound of the horn terrified them. Thanks to Chelsey, we've taken them to many "events" where they were expected keep themselves under control (easier said then done). It was very difficult at times (both on them and us), but well worth it. Another example of why Chelsey is the best big sister in the world!!!! Thanks Chel!

2 Hour Delay

2 Hour Delay! Let's see.....Chelsey is still half asleep; she likes delays. And this is the first year that Kyle truly appreciates the extra time in the morning (and he's not constantly checking the clock). But Matt's feelings on delays, well, his words of the morning say it best, "They're stupid and they're boring."

Evan

I'm not very good at tracking Evan's development (except in my brain), so I'm going to try to track it here. (I'm also going to "try" to blog on a somewhat regular basis). So first, I'll rewind to the early days. When he was born, we didn't know his Fragile X status.....which was our choice. Throughout my pregnancy, I told myself that he probably did have the mutation, but there was always that small sparkle of hope that said, "Wow, can you imagine how great it would be if he didn't???" I'm glad we did it that way, although from day one, I was "checking him out" for signs of FX. The first thing that I noticed was that the roof of his mouth seemed awfully high (he had an awful time learning how to breastfeed), but I never had that confirmed by the doctor because I didn't want to "find out" yet; I just wanted to love my new baby! He also had a definite preference for being held facing away from me which I first noticed at 4 weeks. John and I made a quick trip to the mall to pick up something, and we forgot the stroller. I tried carrying him facing me, and he squirmed and whined until I turned him around. I treasure the few times times that he actually wants to put his head on my shoulder (they're rare occurences, but they do happen :-)

He rolled over at 3 months, both ways by 4 months. He also babbled quite a bit. When he turned 6 months old, he could sit up, unsupported for 10 minutes. He was also saying "Da da." Even though he was hitting these marks, I couldn't let myself believe that he was not affected. So, I told my doctor that I was ready to have him tested. He said that if I could wait, doing it when he turned 1 would mean he could have that blood drawn when he was tested for lead. I agreed.

I don't remember the exact age, but he was clapping before he turned 1, and at 11 months, he could say "Hi," well, that is for at least two weeks he could say it. It's now one of his "lost" words. At 10 months, he was doing an army crawl, actually crawling didn't happen until around 12 months. For a couple of weeks, he did a whole arm wave. He took his first steps at 13 months---around 8 steps----and started walking independently at 15 months.

Although we had him tested at 1 year, we didn't get the results back for 2 months! The first results were "inconclusive," but eventually, we got the result back that he had the full mutation in 95% of his cells......hey, in 5% there is a premutation....maybe those 5% can work some overtime :-) I cried hard for a day and a half, prayed about it, and woke up the next morning with an extreme feeling of being at peace. I still sometimes get angry and sad, but I don't let those feelings consume me.

Back to lost words, which is something my older boys didn't do. Like I said, he could say "hi" for 2 weeks. He also said his version of "Chelsey" for a few weeks. Around 15 months, he said "sock" approximately 7 times. He also said "up" 3 times. From 15 months until around 18 months, he would say "Whose that!" when we would look at photographs on the wall. At 20 months, he started to say "ball" (which he stills says now that he is almost 22 months). Also at 20 months (for a couple of weeks), he could say "dough du ball" (translated to "throw the ball.") Technically, he hasn't said "Ma ma," although he does make the "mmmm" sound, and sometimes, it would sound like "ma." Recently, he has been saying something that sounds like "Mom," and I think I've heard "juice." I thought we were going to skip "flapping," but he started doing that around 15 months.

His favorite activities are looking at books and playing ball. He loves to be read to; his favorites right now are "Dr. Seuss's ABC," "Green Eggs and Ham," "The Three Bears," and "Dora's Bedtime Adventures." He also loves music, Raffi is his favorite. When he was younger (6-8 months), he was fascinated by the CD player when I played his music. He likes "Goodnight, My Angel" (song by Billy Joel, book illustrated by Yvonne Gilbert). I sometimes hold him and I sing along with the song as we turn the pages. It also seems to be a great calming tool for him. In the evening, I'll turn the song on (repeat a couple of times), and he'll flip through the book. It seems to work well when he is fussy. Oh, and he LOVES to be outside.

He's not the greatest eater or sleeper, but we're working on both. He's underweight, so every bite counts!