Monday, October 19, 2009

What We Believe

A few weeks ago, Kristie at Life with My X Men posted an entry - religious training and fragile x. I was going to comment on it, but found my comment to be too long and decided to make an entry out of it. My goal is not to offend anyone, but if I do I cannot apologize for it. This is what we believe in our family. And, let me add, I am in no way saying we have all this figured out or that we do it right all the time, but we sure give it a good hidy-ho effort every day. We also are always ready to receive wise guidance from others who believe the same as we do about our Christian doctrines, faith and beliefs as they relate to everyday life.

In our opinion, raising our children to love and have a relationship with Jesus Christ is both the most wonderful and frightening privilege given to us. How on earth do we pass this along to our children.....who currently (1) are very young and (2) do not have the ability to understand things in the same way as typical kids? Well, we figure we do it in exactly the same way we would if they were 'typical'! We lead by example. No, we don't always manage to display the example we would like, but we sure try. When we fail (like totally, totally lose our cool with them, or spank out of anger, etc), we try to chalk it up to what NOT to do instead of beat ourselves up night and day over it. God's grace IS sufficient to gird us up for the next challenge, which is usually just right around the corner. :)

My biggest fears when we got our first diagnosis, and each one after, was "Will they learn to love, and will they know our love and the love of Christ who formed them? Will they ever be able to understand what it means to have a saving relationship with Him?" I cried lots over this. I sometimes still do. But God is so good. He shows me in ways only He could that He is really in charge of it all. I do my part, He promises to do His. So, I cherish the times I watch my kids in front of a Mercy Me DVD dancing up a storm, arms raised, and voices singing and saying things like God is good. It warms my heart when Avery does it, but it runs even deeper when Ian does it. He'll raise his hands and close his eyes. It's just beautiful! And it warms my heart that they enjoy going to Sunday school each week.

With Ian, because of some his difficulties in school, every morning we try to talk about how God made his hands to be nice and his mouth to say nice words. When we see him hit, push, pull hair or say 'stupid', we remind him of these. And we ask him, "Ian what did God make your hands for? Ian, what did God make your mouth for?" That way when he answers, we know he was paying attention. :) Just tonight he was imitating me as I got down on my knees, palms lifted, singing. OMG! And just imagine...if it's that adorable and heart-warming to me, how much more is it to the Lord's!!!! So, although I know that he does not fully understand everything, I do believe with all my heart he will...in the way he can. I believe the Lord really, really wants to be sure I know that

Avery doesn't understand everything yet either, which is fully understandable at her age. But, she is further along in understanding than Ian. She asks questions, likes to pray, and thanks God for EVERYTHING when she prays. She also tells Ian when he's done something that may have made God's heart sad. We've started praying together for her classmates that weren't at school that day because they were sick. One of them was on a trip so Avery wanted to pray that she would be safe. She once made a comment like "God is not real", which brings up really good conversation. Of course it's hard for her to understand when she can't see Him. It's hard for most of us a lot of the time, and she's only 4. We let her know He is real and lives in her heart. Yeah, try to get a 4 year old to understand that. But right now that's one thing we'll keep saying, even though she doesn't understand it yet.

We make sure we don't 'shove' things down their throats or tell them a bunch of heavy stuff they could not understand at this point, like why people die, why bad things happen, how Jesus could actually take care of all of our sins, how He could be everywhere at once, knows all things, etc. Instead we just set the best example we can, and hopefully they will continue on the path they are and will ask more questions as they get older. Then we will know they will be ready to know more. Right now, we let them know what pleases God, what breaks His heart, and that Jesus loves them soooooo much. We believe in 'teachable moments' and look for them all we can.

So, yes, I am a firm believer that fragile x'ers, and all other SN kiddos can know and love Christ and learn what it means to walk with Him. It may or may not look different, but God speaks to their hearts just as much as ours. I will never let anyone lead be to believe otherwise.

Tuesday, October 13, 2009

Anniversary Trip

This is Jim's face right before he's getting ready to color my hair.

This was a really cool spider that wouldn't let us take it's picture. It kept coming up as this bright light. Pretty clever guy.

"I think we're lost?" "Which way do we go?"

Self pic before our hike.

"Roses in our Garden" Jim's anniversary gift to me to add to my Willow Tree collection.


We just got back from a long wonderful weekend away for our 10th anniversary. We went to an incredible resort in the Ouachita National Forest and Lake area in Arkansas, and it was great. We're already planning to go again with some friends. It was relaxing to be kidless for 4 days. We had great family (thanks Tallmans) and friends (thanks Williams) taking excellent care of our children while we were gone.
We had planned to hike, play tennis (not that either of us play), relax at the spa, go boating to our own island. However, our plans changed a bit due to weather, missing equipment, and an extra long hike. But, no loss. I loved the weather! It was nice and cool, rained a little, and overcast. No humidity! That was the best. That's relaxing weather for me, especially for fall. And let's not forget to mention the beautiful colors! We also met some really fun people.

We left Thursday night, stayed in a hotel along the way; got up the next morning and headed to check-in at the resort. We got there earlier Friday than we thought we would, but thank goodness our room was ready for us to check in. After check-in, we drove into town for a few necessities and checked out town. Then we checked out the resort area. Then, we just sat in our condo and enjoyed....dare I say it.....SILENCE! Ahhhhh! And we enjoyed a wonderful seafood meal cooked by my chef of a husband. Yum!

Saturday, I slept in. Jim has a hard time sleeping in, poor guy. After going back into town to pick up items we should have gotten on our first run, we decided to check out a part of the Vista Ridge trail. We hiked 4 miles. On this part of the trail, we were passed by lots of mountain bikers who were participating in an adventure race that was going on the same weekend. They all looked really tired. We found out later after talking to the coordinator of the race, that the biking part was the last part of the race. Before that, they had been running, canoeing, and hiking off trail with only a compass and map. The entirety of the race was anywhere from 8 to 14 hours.

After getting back to the condo, I enjoyed a nice hot bath (which I don't generally get to enjoy at home). Then we went to the resort restaurant and enjoyed a yummy steak dinner. Then back to the condo for a movie. And I talked Jim into coloring my hair. Never done that before. He's was quite funny.

Sunday morning we got up, ready for our longer hike. This hike ended up being 3.5 miles/2 hours longer than we planned, due to someone's error in reading the map (and can I say, it WASN'T me...miracle). Neither of us cared much though. We actually got quite a good laugh from it. The end result....13 miles of hiking beautiful forest and streams. It's a good thing (1) we packed our good hiking boots for the trip, (2) I didn't sleep in that morning and got a good start time, (3) we packed plenty of power bars and water in the backpack. Our feet were barking at the end. When we got back, I took another nice hot bath. Jim was so hungry he cooked while I bathed. (Yes, I do actually cook for our family. Jim likes to do the cooking on vacation....and I don't argue). So, we enjoyed another of his wonderful meals. Then, because we're both football fans, we watched the Sunday night football game.
Monday morning, we got up, bodies screaming. Poor Jim had blisters on his feet. I went down to the spa for a massage, only to find out they didn't have any openings until 3:00pm.....we had to check out by 11:00am. Lesson learned.....make reservations. So, we packed up, turned in our tennis raquets and keys, loaded up the van (along with the boat we'll use next time as well), and headed home. The kids were great when we picked them up and were great the rest of the night. That made it a nice transition back into the swing of things. Oh how we never take advantage of our time away!

Wednesday, October 7, 2009

hmmm, busy at work??????


Yep, he's mine. All I can say is.....don't ask. :) Gotta love this man!

Friday, October 2, 2009

Can I Start Today Over?

GRUMPY!!!!


ARG! I was supposed to be blogging on how happy I am because today is our 10 year anniversary. But nooooo, yuck had to get in the way. Instead I am super emotional (not even on my period). Jim and I got into a conversation about the schools and children, particularly the 'not typical' children. I really tried to keep my cool, but I blew it. So, you guys get to read it....remember, all raw unprocessed emotions.

So, I try to explain and bear my heart about how I feel about things like Ian getting pulled out of his class and put into a different class, about not really knowing what's going on this year, blah, blah, blah. I'm not doggin' the school. They have been very kind to us, and I feel very confident and fortunate, overall, about the care and attention Ian gets there. BUT, I also have a lot of fear. And when it hits, it hits. When I try to explain how I'm feeling to Jim, mostly I get how I need to understand how strapped the school is when it comes to our type of kids. No real programs for them, parents sueing, not enough funds for aides, etc. Well, that's all find and dandy, but what I really want to hear is, "Honey I know this is hard for you, I'm with you, and we'll do all we can for our children. Hang in there. " You know, something encouraging for ME (yep, all about me at this point). I just feel like he doesn't hear my heart. Like all his concern lies with the school. I DO know how difficult it is. I was a classroom teacher and I did have SN in my class. If anything, how would HE know! He does resource in-class support and pull-outs. He doesn't even have his own classroom full of kids all day.

So, I accused him of 'siding' with the teachers/principal and told him I would appreciate support for me because I'm sure not going to get it from anyone else. He's supposed to be there for me and the children. I'm not asking him to go out and start demanding things. I don't work that way. I'm asking him to say what I need to hear when my heart is scared and hurting. The only thing I could compare it to to help him understand (cause he still says things that lead me to believe he's not TRULY understanding what I'm trying to tell him) is a family situation. I asked him, "Okay, so what if everytime you struggled with the family member and felt beaten down, I decided to take their side and tell you that you need to understand what they're going through (which in this case would be a ridiculous statement). Would that make you feel like I was YOUR cheerleader and that I truly understood your heart? NO!"

I know he doesn't really know what to do with me when I get like this. So, I've pretty much vowed to keep it a blog thing and stop trying to get him to understand. This is just one of those times I feel completely alone. Like I'm the only one pushing to help Ian (which is not true). I just see sooooo much potential and I don't feel like he sees the same potential. Is that the hardness of the teacher these days?

I'm finding it hard to stop crying this morning. I hate to say things like, "This is my life, I have to deal with it." It is my life, but I fully expect to enjoy it and thank God for it. I was never promised an easy life and I'm okay with that. But sometimes I have a really hard time 'doing' the hard life. And I don't even have it as bad as some people I know. But I try not to compare lives. That's not what God intends for me to do. He wants me to do the life He's given me.

Okay, I think I'm done. I'm going to go spend some time with the One who really knows the details of my heart. I'm glad we're all walking this together. You help me not feel so alone. Once things process and I get to talk to Jim again (I've already emailed him to tell him I love him and I'm sorry), I'm sure I'll be put back together.
By the way, did I mention today is our 10 year anniversary!?

Monday, September 28, 2009

Weekend Away

This is my very good and most funny friend. Yes, believe it or not, she is. Why does she have a pair of scissors clipped to her nose, you ask? Well, Jill is on a diet and we happened to be baking cookies. The aroma was too much for her self-control. Her solution? You got it! She's so smart! And no, she didn't have even one cookie. At least not that I know about. :)

This is the "Texas Cabin". This is the most popular of the cabins. Jill and I stayed in it this time.
This is in the crop room. This is Jill's and my collection of paper. She came up with this great idea last time. We each layed out all our paper so that it was within easy eye view when trying to come up with layout patterns for the pictures.

The bugs and spiders were outrageous this time! Especially the daddy long-legs and these annoying tiny flying things that kept getting in our faces and then falling to their doom in scrapping glue! This was one of those particularly beautiful spiders sitting in her web. Luckily, it was outside the crop room, not inside. It is a cotton spider. When we went to pack up to leave.....she was gone. Hmmmm. Hope she didn't come home with us!

These were just a few of the pictures. The only thing I didn't take a picture of that I wish I would have was this stuffed pheasant-like bird that was in our cabin. Jill and I are notorious for playing practical jokes - mainly on each other! She has the best sense of humor. Even better, she can dish it out as well as she can take it! Anyway, this bird kept 'disappearing' and 'reappearing' in strange places in the cabin.....my bag, the shower, the toilet paper basket, the bed. It traveled quite well.

I almost got Benjamin's book done. I decided to keep up with tradition and didn't do any journaling yet. I did manage to get embellishments on some of the pages during the trip. I only have March and April of '08 left to do. Then my goal is to add embellishments and journaling to all 3 books. Then what? Hopefully cards! I would like to scrapbook some trips, but who knows.
It was a great and relaxing trip. Jill and I left home Wednesday evening, a night before the others started arriving. We got back early yesterday evening.

I did get some running in, which felt great. Except for the tiny flying bugs threatening to enter my mouth and eyes, I adore running in the country. The air is so much cleaner! Those 2 lane roads are full of hills to add to the adventure!

Although we didn't get to bed until ridiculously late, I slept great, which is rare. I only got up once each night and got 8 hours of sleep each night. Woo-hoo!

We had great music. Everything from 80's to operetic to praise and worship. We had great conversation. Everything from trips to how the Lord is working in our lives. We even stayed away from politics.....way to go, Jill! And we had a couple of nice prayer moments for things that came up.

We watched our usual couple of movies. This time we watched Ever After, Day After Tomorrow, Big Fat Greek Wedding, and Return to Me. I don't think we actually sat to watch all of any of the movies. We'd watch for a while, then it became background while we scrapped.

Jim did great! The kids got fed, bathed, and made it to and home from school. I had left a card for him to find, which blessed him. Just wanted him to know how much I love him and was thankful for this time away. And to remind him what a great dad and husband he is.

Well, I think that catches you all up on the time away. We already have our next one booked in April. Now I'm looking forward to my time away with my husband for our 10 year anniversary next week!

Tuesday, September 22, 2009

Time for Fall, Time to Scrap!



I adore fall! It's my favorite season. We got married in the fall because we both like it so much. So I had to blog on this day, the 1st day of fall. There's just something refreshing about the season. I love being able to open the windows, which happens so little here because of heat, humidity or rain. Today I turned the A/C off and opened the windows. It's actually that cool outside, and it feels great.

Tomorrow I leave with some ladies to scrapbook. A good friend of mine puts this together and her goal is for us to do it twice a year to catch up on our books. Yeah, I say that as if I was a real scrapper! I really thought I was going to be, and maybe I still will be one day. That was before I had children. Now, I know a lot of people who have kids (and many who have more than me) who are still able to do all the mom/wife/family/etc. things AND still scrapbook. I am NOT one of those people. So, my goal is that each child will have a scrapbook from their first year of life...birth to 1st birthday. How far have I gotten? Well, I'm further than I was the last time we headed out to do this. I have Ian's pictures in his book. I still have embellishing and journaling to do (if I haven't forgotten everything already...it HAS been 5 years). I have Avery's pictures in her book and mostly embellished. I have journaling to do in hers. BTW, her book ended up being 1 1/2 times as thick as Ian's. Hmmmm, probably cause she's a girl. Or maybe because I somehow felt like I had to put every picture of the both of them in HER book? Regardless, it's thick! Tomorrow I'll be off to start (and hopefully complete) Benjamin's book. I would really like to have pictures, embellishings, and journaling done by the time we head home. Seriously, I'm there from Wednesday night to Sunday night. And we stay up nearly all night each night. So, that's my goal.

The big trick is going to be....can I totally enjoy myself without worrying how Jim is doing with the kids? I'm thinking I can once I get there. Right now, I panic. He's soooooo great to let me do things like this, and never complains about it, and is even taking off work 2 days. But he and I both know he gets a little more stressed having all the kids by himself for that long of time. Big bummer is that usually my in-laws are around to help out, but they're going to be out of town that weekend too. I'm sure he'll be fine. As he always says, "The kids will get fed and stay alive." He really does better than that, but it's a little joke we have.

So, I'm off to relish in the coolness of the air. Okay, I'm off to cook dinner. I'll catch up with everyone after I get back. Wish me luck! Ooooh, wish Jim luck!

Tuesday, September 15, 2009

HATE those ants!

Why oh why did God create fireants! Our first encounter with them left us taking a fully blown up Ian and absolutely crazed out mom to the ER where we were told that subsequent bites could be worse! WORSE!?

Today, Jim hollers for me after he had taken a shower. He was drying himself off and guess what rude guests he was met with! I guess because of all the rain we've had, they decided to take up residence in our linen cabinet!!! I'm currently doing 2 loads of towel laundry. Jim sprayed as much as he could around the bathroom and we've quarantined the kids from it and our bedroom. Luckily, all I have to do is mention Daddy getting bit and Avery won't go anywhere near our room. Not only that, but she doesn't want me to either!

I have NO MERCY for those.....those.....x!%###! I'm surprised no one has made a horror flick about them....or have they?

I'm disgusted!!!! And now, also living in fear that they will travel to my babies' rooms! Anybody have any suggestions??????? PLEASE! I'd take a picture and post it, but they don't deserve it.....unless it's a dead one!

Wednesday, September 9, 2009

The Little One Pooped! In the Potty!




OMG! He really did it! He'd been pretty consistent going tee-tee when I take him. He'd even come running when I say, "Benjamin, time to tee-tee." So, I heard him grunting in the living room after lunch and thought, hey why not. So I grabbed him up, stripped his diaper off and put him on the potty. After a little while of doing the grunts I taught him, I decided to quit staring and give him a book. Once he got engrossed in looking at it, I snuck away. When I came back I didn't think anything had happened. I picked him up and low and behold, there it all was! I'm sure he thought I was nuts. I praised, and praised, and praised him; he praised himself with a "yesssssss!", then I gave him his Smarties. Oh could this become habit?! Sorry for another poop pic. Only a mom, right?
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Tuesday, September 8, 2009

Go Sooners! Or Not!

This is where we went for Jim's 40th bday. This is the OU/BYU game being played at the new Texas Stadium. The great thing is we went FREE. I actually had a surprise guys' night planned for Jim and his buddies to watch the game and eat, but then Jim called and said a co-worker had a friend she could get tickets from. This is what Jim originally wanted to do for his birthday, but the tickets were so stinkin' expensive, even for nosebleeds.....thanks Jerry Jones. :(
But it all worked out even better. We still got nosebleed (literally the next to the very top row), but they were free. Which meant we could actually pay the ridiculous prices for food/drinks. And we got to park at in a friend's garage that literally lives 2 mintes walking distance from the stadium.
This was our first time in the new stadium. It was incredible. Even with nosebleeds, with the largest HD jumbo tron around, there's really not a bad seat in the house (as long as you don't mind paying out the wazoo to watch the game on a TV). We are OU fans cuz my family lives in Oklahoma and I was raised an OU fan. Jim quickly adapted once we got married. Because they got paid boo-coo bucks, they played this "home" game 3 hours away at the new Texas Stadium.
Horrible thing happened.....THEY LOST! And looked bad doing it!

Monday, August 31, 2009

First Week of School

Proud Ben on the potty
Avery at school her first day

Avery 1st day of school

Ian 1st day of school - not as smiley!

Ian getting on the bus

Benjamin's 2 year pic

Biker Ben's other 2 year pic

Well, we're entering into our second week of school. I was hoping to have this entry done by the weekend, but oh well. Ian entered his first day of kindergarten. He's in a special program, but is in a regular ed classroom. Few big changes for him. First, he's had the same wonderful teacher for the past 3 years. Now he has a new teacher. I don't know that much about her, except that she's the more strict, organized, routined of the teachers. This is good for Ian IF she is able to have some flexibility with his impulsivities. I'm not sure if there are any of the other kiddos from the program in this same class or not. Second big change is going from 8-10 kids to 21 kids! OMG! Third big thing is this year he is all day instead of 1/2 day. How's he doing? So far, so good. The great thing so far is that he waits til he gets home to poop!

One of my fears was that they were not going to work on his potty training. Jim had told me that was just a PPCD thing. Well, the 2nd day of school, the head of the program (a great lady, and wife of our dentist) sent a note home saying she would like him to be in underwear and that the aide would take him to the potty every hour. This was a HUGE blessing! So, I sent a note back thanking her for that. On the 4th day, Jim came home and said that they came down to his classroom with Ian to tell him Ian went to the potty all by himself. Walked in and everything by himself. They wanted him to praise Ian....and he did.

He's riding the bus. We did a test run during his summer school time. He loved it. I felt even better when I found out that there were no 'typical' kids on the bus. I've had horrid visions of the kids being mean to him on the bus. So, this was another blessing to me. And the bus driving and aide are the same ones he had during the summer. He gets on the bus all happy, and he comes off the bus all happy.

The only thing I don't really like is that they don't seem to keep me posted on the details like his teacher did the past 3 years. I suppose I can understand that since they have 21 kids in the class. So, I figure if I write notes asking, then they'll answer. Hopefully I don't get on their nerves. :)

Avery's doing great as well. I was really worried when we went to meet-the-teacher the day before it started. She wouldn't walk in the class. This is her 3rd year going at this particular church early childhood program. She goes 2 1/2 days. So, I did what any sensible mother would....I bribed her! I told her that if she walked in like a big, brave girl the first day then we would go get a surprise after school. She did, and we did. I was so proud of her. Today, her teacher told me she played and ran and screamed with the other kids on the playground and in class she talked with the other kids. She's becoming a school pro!

Benjamin is at home with me still. He's the same age Avery was when we sent her to the 2 year old program 2 days a week. It's hard to believe. Benjamin is definitely not where she was at that age. But he is such a joy none-the-less. I enjoy having the time with just him. He loves to sit and look at books, dance and 'sing' to music videos, and climb ALL OVER EVERYTHING. He's hard to keep up with....especially at 40! He's been slowly adding single words to his vocabulary. He even uses them every now and then! I've been working on potty-training him. Slowly. I put him on the potty first thing in the morning, still before baths (hate seeing him pee in the tub - yuck), and every so often during the day. He does great going tee-tee. He's so proud of himself after and loves getting a Smartie for it. I haven't gotten him to poop yet, but he makes the cutest grunting sound when I tell him to poop! One day something will come out. Don't ya just love the pic!

Friday, August 21, 2009

The Things of Life

I'm sitting here listening to my children fight. Avery yelling at Ian for saying 'bad'. Ian saying it all the more because Avery is screaming at him. It gets funny after a while. But right now, it's just kinda tiring. I'm in one of those spots.

A very special friend of mine and her sweet family are moving away in a couple of weeks. I understand why the need for it, but it doesn't make it any easier on my heart. A lot more goes into it for me, but I won't go into that. I will miss her so very much, and miss watching all the milestones of their bathed in love little boy. I don't doubt that we'll keep in touch.

Side note: Avery just screamed so loud my eardrums about popped! Can't handle that at all. Silence now, as I sent her to her room. All is good. :)

We have friends who are struggling with their marriage, and it makes me so sad. I'm glad that they feel comfortable talking to us. I just feel helpless and hope that God, who instituted marriage, will restore this sweet couple's marriage. I know they're wanting the same thing.

Family stuff is about to drive me nuts. I've no doubt a lot of you could relate if I went into the whole story. But you know how it is....never know who's reading. Let's just say all is about to blow within me if the nonsense keeps up, especially if there's anymore of it during another 'time of the month' for me. Hold me back, sista!!!! I just don't get it, and truth is, I don't wanna get it. I just want people to start acting like adults, take responsibility, stop enabling, and take responsibility for crap that comes out of the mouth. Is that too much to ask? Okay, better stop there. You get the picture. After all, I am perfect, ya know. Ha Ha Ha. Kidding, I fully realize the majority of my many faults. Maybe one day I'll blog about those. Naaaaah!

Side note: Ian is loving on me as he asks for about a million different videos and laughing after he says each one. Silly boy!

Side side note: Benjamin is ripping all the books off the book shelf. ALL the books he can reach.

This all reminds me of a country song I've heard a couple of times. I think it may be called "Sounds Like Life" or something like that. It's this guy who's talking to a friend of his who is struggling with a bunch of things (little work, can't pay bills, fridge went out, wife's pregnant, etc.). Anyway, basically this guy listening is noticing that it's all the things life is really made of. The everyday things and struggles. So in the chorus, he says something like, "may not be whatcha wanna hear, but sounds like life to me." So true. Not that we're happy in them, but it's true. We've never been promised a life of no struggles. But we have been promised a Savior who knows and knows the end of the story as well. I can still hurt and cry and get angry, but in the end, hope is the answer. Life is really fleeting. While we don't ignore the 'struggles' and 'everyday things', let's never never never let those overshadow the many wonderful things of life! Whoa! Where'd all that come from?!

Side and end note: I just heard Ian say, "oooh, Ben pee'd". Benjamin took his diaper off and pee'd on the furniture!!!! We don't have a dog for just that reason! Here's where ya gotta laugh.....the things of life!

Gotta go clean up a mess so I can get us packed to go out of town in a few hours. Thanks for listening. I'm sure I'll be okay in a few hours.....or days. :)

Friday, August 14, 2009

Can't Sleep


It's 1:40am and I can't sleep. Didn't someone else just have this problem not too long ago? So, I thought I would get up, eat another 1/4 of the container of icecream, and add an entry to my blog.

Ian is up to his old habit of not sleeping through the night again. Very irritating. He doesn't cry out and get mad like he used to. He just 'happy screams' in there. Not too long ago, he woke the other ones up. Not cool! He's in there now awake. We just up'd his does of guanfacine cause we were noticing that it didn't seem to be having the same affects. If we don't notice anything after a few weeks of the increased dose, I think we'll go back to clonodine again. We're thinking that maybe since he's gained weight since the last time he was on it, maybe he'll be able to take a small dose of it during the day without it knocking him out.

Remember my 20 year old niece who got married in April? Well, I don't remember if I already told you that she's pregnant. She got pregnant like immediately. She's 17 weeks. Well, she called about a week ago to let me know she got tested for FX and found out she's a carrier. It's weird, but all of a sudden, it seems the whole family is now wanting to read up on it more. It's a good thing, but it kinda woulda been nice to have them so gungho about knowing more about it when we got our diagnoses of fully mutated. My other sister just recently asked me for the websites. My mom said she read something, something, something about the repeats. And of course, my oldest sister (the niece's mom) is wanting to know more about it obviously. I'm not mad, just kind of feeling.....I'm not sure. Probably don't need to go there anyway. I just wish everyone would have wanted to be more educated when I needed them to be....with all my diagnoses. I actually hadn't thought about any of that until I started writing this entry. Oh well, better late than never.

Ian LOST another tooth. No idea where. But at least there wasn't blood everywhere this time. He looks awfully cute with his two bottom teeth out. He's got a tooth growing back in place of the first one. I just hope his permanent teeth are as pretty as his first set. I love his teeth.

AVERY SAYING: One more story, then off to bed. Grandma was watching the kids yesterday and told me this story: The kids were watching football (we have several games recorded for Ian, who loves to watch them over and over and over and over). She decided to give them a quick football lesson. She told them that the man with the ball needed to run fast to the yellow (first down) line. If he didn't make it, they had to try again. So, Avery pipes up and says, "Oh, that's like when I wait to long and don't make it to the potty. I tee-tee in my panties because I didn't make it to the yellow line." Too cute!

Monday, August 10, 2009

God is so Sweet

Sorry I haven't been up for a while. Trying to stay caught up with ya'll, but havin' a hard time. We've just been trying to keep the kiddos happy. It gets tougher as the summer goes on.....and it's soooooooo stinkin' hot outside (not to mention those nasty, nasty fire ants!) that finding things to do (inexpensively) gets hard after a while. Thank goodness for grandparents with a pool!

I just wanted to share a story of just how sweet Abba is to His children. The other day I was having a bit of a down day....worrying that Avery was going to grow up despising Ian because he can be so physically hurtful to her, especially when he's having a rougher day. Well, that night I went out for a run, and when I got back Avery was excited to tell me that she was going to sleep in Ian's room. I looked questionably at Jim, who told me it was her idea. Then I got to hear them having such a good time in the room before they fell asleep. That calmed my heart so much. I believe He was speaking to my heart through this and telling me that all will be okay. This is just a season and that Avery's love and understanding for Ian will grow with time. She does love him.

Thank you, Lord, with being so faithful and for letting my eyes be open to your sweetness!

Tuesday, July 14, 2009

UH-UH!

Well, we're having a little difficulty 'enlightening' our neurologist on the folic acid therapy. We faxed him all the info. from the Hagerman research we found, hoping we could all be on the same page. Previous to the appointment and after 'reading' the info. he did prescribe a low dose of the folic acid over the phone for us.

We get to the appointment and tell him we want to move Ian on up to 10 mg, incramentally, like we had been doing so far. He was quite hesitant, left the room, came back, and proceeded to tell us what folic acid was (like we didn't know). Against what he would have wanted to do, he went ahead with the prescription, working our way up.

Then came the battle with the pharmacist. Basically he wanted to talk to the doctor because he was concerned about the dosage and wanted to be sure the doctor was in his right mind when he wrote the prescription out. Don't get me wrong, I am grateful there are people out there watching for any weird stuff from doctors. However, not when it inconveniences me - ha ha. So, long story short, the doctor would not override the pharmacist, so I'm stuck with a prescription of 2 mg. He had already worked himself up to 6 mg a day. That would be a step back. Whatever.

So I went to get the prescription, deciding that we would continue with what we've been doing and when that bottle was gone, we would get the higher dosage pills from a doctor friend who does more holistic stuff. When I get to the pharmacy they said insurance (medicaid because he's on SSI) isn't going to cover because it hasn't been 30 days since his last prescription. I just paid for it myself - it was cheap. Then I went to the vitamin store, bought a bottle of 800 mcg and am giving Ian a total of 8 capsules (emptied into his juice) a day (about 6mg). We were giving him 8mg, but then started noticing some behavior issues. So, I dropped back down to 6mg. I'll up it back up just to be able to decide if it's that or was just an off-week for him.

So, then I email NFXF for references for a new pediatrician and neurologist in our area that are familiar with FX. They sent back one pediatrician and one neurologist. Never heard of the pediatrician. The neurologist?......Yep, the same one we're using! Ugh! I figure we'll be a good source for him when other FX parents ask about folic acid therapy! :)

Sometimes ya gotta laugh just so ya don't scream.

Wednesday, July 8, 2009

Did I Really Do That?

So, I go to Kohls to buy a shower curtain. Of course, the one I like I cannot find on the shelf. When I asked an employee about it, she said she would go see if they had any in stock. So I wait, and wait, and wait. No kidding.....for 25 minutes!!!! Finally, I saw another employee, told him about the disappearing lady, so he goes to see if he can find her and the shower curtain. He comes back....no luck finding the lady and no luck finding the shower curtain. So he says, "wanna just buy the display?" I say, "Sure". So he takes it down and I take it to the register.

A friend of mine asked me later if I asked for an extra discount since it was a display. Nope, I don't ever think that fast. I take the curtain home. A couple days later I go to put the hooks in to hang it up. Oh, first I have to work 20 minutes just getting a display tag off the shower curtain. Why 20 minutes you ask? Because of what the curtain is made of, it's fragile. If I were just to rip off the tag, it would have ripped a big hole in the curtain. Okay, then I go to put the hooks on. I'm putting it on with the liner. All of a sudden, I run out of shower curtain, but I don't run out of liner! The display is a partial shower curtain!!!! Okay, some of you would probably have been smart enough to notice that at the store before you decided to say, "Sure". I, however, did not. I just knew I wanted THAT shower curtain.

Embarrassingly, I had to take it back. Lucky for the me, the clerk didn't mention anything about how I didn't notice. She only said, "They sold it to you that way? You should have asked for a discount".

You will be glad to know that they had the actual shower curtain the day I went back.

Wednesday, July 1, 2009

Know What I Wish?

I was thinking the other day about how I wish that I could meet all of you! How great it would be for us all to be able to meet in one place (I'd opt for anyone living in Australia).

I got a call the other day from someone who's son was recently diagnosed with Fragile X. She got my name through a friend of hers who knows my sister, and therefore knows about my situation. As I talked to her, I found myself wanting to just talk and talk and talk. I'm not sure I was even much help to her, but it all reminded me of when we got our first news. All the emotions, uncertainties, questions, etc. I told her one of the most important things to me was getting in touch with others who were going through the same thing. That's how I got questions answered, resources, and just knowing that the feelings I was feeling were okay and normal. I felt like I truly ached for her. I found myself praying for her marriage and family, knowing what a toll it can take on couples.

Anyhoo, then I started wishing this wish....especially as I got responses from those of you I requested information from via email. I've loved having you all rejoice with me in the little things and feel compassion for me in the not-so-good things. And I've loved feeling a part of each of your lives as well. So, thank you! And who knows, maybe one day........

Thursday, June 25, 2009

Catchup

Okay, catch up time. I'm probably missing stuff, but this is what I have time for right now. Although Benjamin isn't in any of the pictures, he's been doing a lot. He's starting to say single words more frequently. He'll say 'mooooorrrrrre', 'dink', 'bite', 'bath', 'dowwwwwn', 'hi', 'bye'. He elongates about everything he says. I hear that's the way is supposed to be done here down south. A 1 second word becomes a 5 second word. Anyhoo, he's doing good. We had an orthotics appointment a few weeks ago. He'll get his SureSteps in about a month. Hopefully that will help get him walking a bit stronger. His knees buckle a lot and his feet pronate a bit. I can't wait to see him in them. I got them with dinosaur print. Okay, so on with the pictures:



My niece got married in April...little late in announcing. She was such a beautiful bride. Look young? That's because she was only 19. (She's 20 now). She's also now pregnant. Can you say honeymoon baby? If she's startin' this young, I expect her to pop out a bunch of babies! Seriously, so hard to think of her as a mom. She seems to have grown up so fast. She'll be a great one though.

Ian lost his tooth a few weeks ago. LITERALLY LOST IT! We have no idea where it is. We just happened to notice his hand and mouth were bleeding. I thought he made his finger bleed by chewing. But then Jim noticed the tooth missing. (Doesn't it seem kinda early for him to be loosing teeth?) We had noticed over the last month that his two middle bottom teeth were spreading apart more. Now we know why. I just hope I don't find that tooth somewhere. I do NOT do well with the whole loose tooth, pull tooth thing! When I taught 3rd grade, that's the one thing I couldn't handle. It's not a gross thing to me. It's more of a "fingernails across a chalkboard type thing." Can't explain it, but it gives me chills just writing about it.


Okay, so the niece got married in April. My nephew (from the same sister as mom to my niece) just got married last weekend. Yes, my sister is quite a bit overwhelmed at becoming a MIL twice and finding out she's going to be a grandmother! This is a picture of Avery and my other niece (from my other sister). Avery was quite the hoot. My niece was the flower girl in both weddings. Cute thing is the dress she is wearing belongs to my oldest niece (that just got married). It's the same dress she (oldest niece) wore in mine and Jim's wedding. Confused yet?


This is my handsome nephew and his new bride. His wedding was a lot of fun. He is 26 and is such a good kid. Not perfect. But he is definitely a family guy. He still hugs and kisses all over his mom and his aunts. I'm really proud of him.


This is my brave Avery. Just last year I couldn't even get her off me in the pool. Now she's jumping all by herself. I wish I could have gotten a picture of her when she has her legs bent and stretched like a frog! We left her at my sister's to spend the week with her cousin after we came back home from the wedding. I go get her today. She's had a lot of fun, but is ready to come home.

Another thing going on is we started the Folic Acid a few months ago for Ian. I'm not sure our neurologist understands much about it. I gave him the info. from the FRAXA sight (Hagerman's stuff). If anyone would like to post a comment to me about how they went about with their dosing, feel free. We're up to 3 (1 mg) pills twice a day. We've worked our way up to that, and will move on to 4 (1 mg) pills next week. Right now the pills are working fine with Ian, but as we move up I don't think it's going to be a great option. But our dr. doesn't seem to know how to get it compounded to a liquid. Like I said, I don't think he's ever gone this route before with his other patients. From what I've read from some, it doesn't seem like an easy process???? Thoughts????

Monday, June 22, 2009

Can You Say Poop....In the Potty!!!

Ian's First Poop in the Potty...TMI, I know, sorry.

He was soooo proud of himself!

Ian enjoying his first poop party

Ian still enjoying his party

Okay, I have soooo much to catch up on. I'll try to get to it all this week. But I just HAD to post this one.

We had a breakthrough today!!! I am sooooo excited!!!! I will definitely be over-using my exclamation points on this one. Okay, so Jim tells Ian it's time to go tee-tee. We are remodeling the kids' bathroom, so there's no toilet in there. Not generally a problem since we have another bathroom. However, the toilet in our bathroom is in it's own separate small closet sized room. Uh-uh. Doesn't work for Ian. Too small of space. So, we got out the little kid's potty again....ugh! Well, Ian was being a bit too quiet for a bit too long, so I went to check on him. When I opened the door, there he was....standing with this extremely proud look on his face. When I looked down....OMG!!!!! There it was. So sorry, I realize the picture may be a bit overboard, but I just couldn't help it. At least I didn't take a picture of everywhere else the poop ended up besides just in the potty!!!!

So, Ian got his first Poop Party! Avery is staying with my sister for the week, so I let Ian call her and tell her what he did. She was just sad she was missing the party (well, actually the cake and icecream). I took Ian to the store to let him pick out what he wanted. He chose the little cupcakes (which I think he managed to shove in his mouth before I even got a picture of them), pretzels (instead of Fritos!), and cookies and cream icecream. I hope this is the first of many! I am sooooo extremely proud of him!

Tuesday, June 2, 2009

My Little Graduate

Daddy, Mommy, and Ian with Teachers


Ian proudly displaying his award

Again, proudly displaying award
It was a fun day in Ian's class last week. They had their Awards Day and Party. They put on a little show of songs then his teacher presented the awards. Ian got the Care Bear award. This was for the child who was really concerned and aware of the other childrens' feelings and gave them lots of hugs. She comes up with a lot of really cute and encouraging awards. After the awards they played a slide show. It was really sweet and had a section on there saying 'good-bye' to all the 'graduates' of the PPCD program....Ian included. Yes, I cried. One, because I adore his teachers and know how much they care about Ian. And two, because I can't believe he's going into kindergarten next year. It all still scares me to death, but I believe he'll be well taken care of.

Wednesday, May 27, 2009

Recognized

What a simple word...recognized. Well, here in Texas it's sometimes NOT so simple. The standardized tests here (called TAKS) are incredibly stressful on teachers, students, principals. I won't even go into the details. Lets just say, way too much emphasis goes into those tests every year. Too much depends on them.

There are different levels of ratings that schools get, depending on the results of the tests school-wide. There's Academically Unacceptable, Acceptable, Recognized, and Exemplary. The school where Jim teaches has never made it above Acceptable (but has never gotten Unacceptable). This year, they made it to Recognized. I was very excited for them and for the principal, who has tried so hard every year to motivate and encourage (and threaten some, I'm sure). Needless to say, she has been in a WAY good mood. If they can keep it up each year, that would be even better.

Okay, that's about the only news I have going on these days. :)

Tuesday, May 12, 2009

4 Years Ago Today

Well, today, May 12, is the 4 year anniversary of our first diagnosis. Am I the only one who remembers their date? I don't mean to over-dramatize, but for me it was a date as much to remember as my miscarriage. Many of the same feelings and emotions. So, for my entry today I want to walk down a memory lane that took me closer to the Lord and showed me His great love for me and showed me that He really does care in the tough times. He cared so much, He gave me these great memories that culminate into His perfect and obvious orchestration of my precious Ian.

After Ian was born, but before his diagnosis, I was watching a Praise Baby video with him. As the music was going and the kids on the video were playing, there came a part with this boy in a wheelchair that had obvious special needs. It was the first time I had seen that part in the video, and I'll never forget the emotions that ran through me. I believe it was then that the Lord told me about Ian. (not audibly, but in my heart) Here's the part that took a while to figure out it was Ian. Ian had been born, but we had not yet had the diagnosis. I was pregnant with Avery as I watched the video. So, of course, I was convinced that it was Avery He was telling me about. It didn't take me long after our diagnosis for the video to hit my mind. It all clicked at that moment. The Lord was telling me about the specialness of Ian.

Ian is also the only child that I believe God gave us his name. Ian was never a name I would even have thought of. We had planned on naming him Brennan. I won't go into the long story of how I believe it was to be his name, but I remember it all happened as I was driving home. So, I immediately called Jim and asked him to look up the spiritual meaning in our name book. His name means "God is Gracious". I didn't argue. Jim and I both knew that was to be his name.

One more thing. I had chosen for my life verse(s) Jeremiah 29:11-13 early on in my Christian walk. At one point when I was so distraught and brokenhearted about the diagnosis, this part of the scripture reminded me that I'm not alone. "...plans to give you hope and a future." This wonderfully reminded me that as I seek Him and pray to Him, MY SON HAS A HOPE AND A FUTURE. It was then I realized that this part of scripture was not meant only for me to have as my life verse, but it was meant for me to have to turn to in that particular part of my life (and still today). God chose it for me to have it inbedded in my heart for just the right time.

Oops, I thought of something else. Again, I will shorten this story. My dad and I had never had what you'd call a great father/daughter relationship. It was just kinda 'there'. After Ian's diagnosis, something happened. See, my mom and dad had a son die at the age of 5. That son had Downs Syndrome. This was a place in our hearts where we could totally connect. It was not until we were talking about Ian one day that my dad opened up about things about my brother. He had NEVER talked about it to me before. Anyway, our relationship is so much different than it used to be. It's more like how its supposed to be.

So, I am one who believes that ALL things happen for a reason (even if I never know that reason this side of Heaven). And I believe that it's my role to bring all the glory to God that I can in all my circumstances. I fail miserably many times. But I do believe that Jim and I live out our life with our 3 Fragile X children well. (Again, not always, but overall) I want others to see a life of hope in me, not a life of pity. Afterall, Christ is all about hope.

Sunday, April 26, 2009

My Big 2 Year Old














My little one turned 2 on Saturday (same day as Blake's bday). I can't believe it. I've said it with the other ones too, but for some reason when it's the youngest, it's harder to believe how fast the time has gone by. Isn't he adorable?!














Here he is enjoying the bounce house with the other kids. We bought this 2 years ago to help strengthen Ian and Avery. It's been a wonderful investment. We're ready for another one that's durable enough for bigger sizes. The kids love it!














The cake, made by my friend, Julie (and her son). She is an incredible maker of cakes. I try to get her to do all my kids' cakes. Show her a picture, and wa-la! I think people like coming to the parties just to see what the cake will be!















Benjamin working on blowing out the candles. Luckily, no spit. With a little (okay, a lot) of help from Dad, the candles went out.















Ben wasn't quite sure what to do with the cake this year either. After viewing it for a short while, he decided a nose dive would work best!














And Ian wasn't about to miss out on the fun! Lucky for him, his brother decided to share!














This was only part of the end result after he was done with that cake. The bath afterwards was almost as fun!














Mom and Daddy enjoying his cuteness.

Friday, April 24, 2009

A Lot of Nothing....Sorta

This'll be a short one. Not in a real 'with it' mood today. Probably because I'm about to start. Yes, finally after 28 or so years of having a period I've finally been able to catch my mood and know when I'm gonna start. Shouldn't have taken me so long.

Anyway...just a bunch of family and friends issues going on....none of which are related in nature. Things that make me want to just move away (for a little while) while people get their stuff sorted out. Sounds kinda selfish, I know. I guess I'm getting a little tired of watching people who don't listen to wisdom, get themselves deeper into _ _ _ _, then blame God or everybody else for the mess they've gotten into. And the kicker is that it's always the person on the outside of the situation who can see all the junk a-comin, or at least some of it. Now don't get me wrong. I'm not saying that I made all the right choices in my lifetime. I know better than to make a statement like that. I've definitely messed enough up in my life. Unfortunately at that time in my life, I didn't have sound people to listen to. They were all in the same boat I was. But it's just irritating to watch it be someone else you know and love do it, especially when they do have people in their life who can give sound advice. Seems like any question, any statement, any act of love gets turned against you. My solution? I'm stayin out of it all. Well, I'm gonna try anyway. I'm getting way better at not offering advice or any sort of statements when not asked. And I've gotten even better at skatin' around the issue when asked. I figure I can still love them and pray for them even when all else fails. As humans, we can't save anyone from themselves, right?

Then to top it all off I found out yesterday that my very, very, very, very good friends are putting their house up for sell and headin' out. As sad as I am, I can understand why. There's really not too many friendships I consider strong enough to try to keep up with when one moves away, but this is one that will be worth it. So, Rian, if you're reading this, I love you dearly!

Okay, I'll be better in a few days. Words of encouragement would be great about now.

Thursday, April 16, 2009

Exciting News

Okay, we all know things are 'final' until the ARD meeting. However, I got a note in Ian's backpack about him going to the ABLE summer school program at his school. This means he will be in the program for kindergarten. This means we are very happy. He'll be in a regular ed class, but with a full time aid to shadow him. I'm not 100% sure of what all this looks like, but we had a lot of help from inside pushing for us to get him in something like this, and we are very grateful. I am just so praying that he will learn more self-control over the summer. I know he'll be excited though because he'll get to ride the bus. He loved riding the bus at his Extended year during the summer last year (even though that school is less than 1/2 mile from our house). Mommy will enjoy it as well. :)

Today when we picked Ian up from school, the first thing he said was 7 layer burrito (a Taco Bell item). I hesitated and then thought 'why not'. So I asked Avery, "Do you want a ham sandwich or Taco Bell?" So sweetly she said, "Oh, Taco Bell will be fine Mommy." Unfortunately (actually very fortunately) she got in trouble and nobody got Taco Bell for lunch. Oh darn, no junk for lunch! The amazing thing was that Ian didn't throw a fit. He was so interested in why Avery was crying and in trouble that I'm not sure he even noticed. He was just fine at home with his all natural PB&J and fruit.

Monday, April 13, 2009

Let's Build A Word!

If ya'll don't have Word World, you're missing out. It's a great show for the kids. The characters and things are made out of the letters that spell them. They build words. It goes through different kinds of skills like rhyming, 's' to make plurals, blends, sounding out words, etc. Okay, now that you have the background, here's the scoop.

We have these little 2 inch sized letters, kinda like the ones we all had and stuck on the fridge, only these don't have magnets. Ian and Avery like to get them out to "build a word". Ian has this gift of knowing what things say by looking at it. For example, if we showed him one of his VHS cassettes (without pictures on it), he could tell us not only that it was a Barney or Veggie Tales, but he could tell us which one it was (Barney Songs, King David and the Ducky, etc.). When he looks at the list of shows we have recorded on DVR, he can tell us which is Dragon Tales, World World, Sesame Street, etc. Get the picture?

So, Ian and Avery are playing with these letters, so I think, "Hey, why not see what he can do." So I get out the letters that spell 'dog', mix them up and tell Ian to build the word 'dog'. HE DOES IT! Yeah, I know....easy word. So, I get the letters that spell 'bear', do the same thing, and HE DOES IT! He had a little difficulty with 'sheep', but he finally got it in the end.

I'm thinking he will definitely be a 'whole word learner' in the beginning. What a big boy! Woo-hoo!!!!!

Thursday, April 9, 2009

Another one on the Potty?

Still working with Ian on the tee-tee in the potty. He's doing really good as long as we set a timer for him. Hard to get him to go on his own free will. But I'll take what I can get right now.

Call me crazy, but I've been taking Benjamin to the potty lately. I put him on it before he gets in the bathtub (ever since I actually saw him tee-tee in the tub - one of those things if you don't see it, you don't think about it as much, but once you see it....all over). Sometimes he has to have me pour some warm water over his privates before his body will go. Other times, he'll just go after I sit him on it.

So, I thought, why not sit him on it at random times too? Sometimes I'll take him first thing in the morning after he wakes up. He's gone then. Today, I decided to put him on right before his nap....he went...no warm water needed. He's soooooo darn cute when I tell him, "Benjamin, let's go tee-tee." He'll stop whatever he's doing, make his way to the bathroom, open the lid to the little potty, and sit himself down. Then he does this "Sssshh, issen" with his finger between his mouth and his ears. He's heard Ian say, "Shhh, listen" when he's gone potty. (Cause I used to have him be quiet so I could hear if he went or not...when he would sit on the big potty.) So, Benjamin does the same thing. Then he's so proud of himself when he goes. SO AM I!!!!!

Monday, April 6, 2009

The birthday party was great fun and the scrap retreat was great fun too! I somewhat finished Avery's book. I have embellishing and journaling and some pictures still to do. I think I got picture crazy with her book because it's at least twice as thick as Ian's. Luckily, girls care more anyway. She loves looking at it. How many times has Ian looked at his????? ZERO! But I look at it a lot.

We haven't had anything exciting going on lately. Guess that could be a good thing. Still waiting to hear when Ian's placement ARD will be. A bit nervous, but I do think we've got some good things in store with it. Ian's teacher got Teacher of the Year this year! She soooo deserves it.

I go this Friday...yes, Good Friday...for my pre-op appointment for the skin cancer on my forehead. I've got to hurry and schedule our family pics before the surgery. We've tried scheduling twice before, but have had to cancel. First time we had sick kids. Second time was right after our spring break trip and Benjamin came home looking like we beat him with a bat! Didn't think that would make for a good picture. So, since we have Benjamin's 2 year bday coming up, I figure we'll knock out two pics in one.

Well, wish I had more to tell. Just feelin' a bit quiet lately.

Thursday, March 26, 2009

Scrappin' 40!!!

Today is the day. I'm the big 4 - 0. Wanna hear an added funny? My mother-in-law's birthday is the same day! We always joke that Jim married me so that he could remember his mom's birthday. Anyway, she's great, so I adore having the same b-day as her. Back on track...Fourty doesn't feel too bad so far. Jim and I always wonder that as we get older how are we going to maintain energy for the kids, since they're so young. Well, we've been working on taking better care of ourselves. We try to eat better....doesn't always work when we're feelin' lazy. We've started jogging again which has done 2 things - given me more energy (although I could always use more), and helped me sleep better at night (I've never been a good sleeper during the night). The trick for me is.....can I keep it up? I can find ANY excuse not to go jog....too windy, too cold, too hot, too tired, blah, blah, blah. I'm actually starting to enjoy the jogging again though, which helps out with the motivation. Shoot me a "you can do it, Donna" comment every once in a while!


What am I doing for the big birthday you ask? Well, first Jim got me this GREAT camera (well, I think it's great). Suzanne, you'd be proud to see what this one is compared to my old one. Thing is, I'm still trying to figure out how to use it. I can do the point and shoot thing, but I want to know ALL the cool things I can do with it. Unfortunately, the way I read instruction manuals - hmmmm, well it might take me a while. Anyhoo, I'm enjoying it so far.

Last weekend, we had a family birthday gathering at our house. My mother-in-law and I decided on pizza and wings to keep things easy. Plus, the kids love pizza - makes it double easy. We hung around, goofed off, told stories, etc. Then my niece (almost 13) decided we should play hide and seek. So, we did. It was soooooo much fun. What better time in life to remember that we can still be kids!!??

Next, my best friend is putting together a girl's night for me tonight. I'm looking forward to that. Basically all Iknow is we're going out to eat, then to a friend's house for girl stuff. I'm excited to spend time with friends I don't get to spend too much time with these days.

Then, the culmination of it all.......scrapbook weekend! 5 other girlsfriends and I are going away to a scrapbooking cottage. We leave tonight and don't come back until....ready for this....SUNDAY EVENING!!! Wee-hooo! Avery will be 4 this summer and I just MIGHT get her 1 year book done. I plan on getting a 1 year book done for all 3 kids, but I don't plan on being a scrapbook mom. Who knows, maybe that'll change....maybe not. I enjoy cardmaking more. It's less taxing on my brain.

So, here's the deal. I'm normally a bit of a jokester when it comes to overnighting with friends. There's one friend in particular on this trip that I would LOVE to come up with something to 'get her'. So, if you have any ideas on good pranks, please offer them up!

To sum up the entry, I just want to praise my Father above for the great life He's planned for me. It's not always easy...okay, it's pretty much never easy...but it's still wonderful. While I can only see the parts of my life He's shown me thus far, I know He has a beautiful plan for making it all for His glory. That knowledge and hope keeps me going everyday. Thank you, Jesus!!!!

Friday, March 20, 2009

Back from Spring Break

OMG! We had such a great time! We have some friends that own a cabin about 2 hours from where we live. They have let us stay there the past 3 years, and each time has been such a blessing. The kids, although they were a little sick, had a great time. Ben, however, looks like we beat him with a baseball bat. He's more of a shuffler than a walker, so when he 'walks' he trips easily. That's very apparent by his cuts and bruises. He survived though.

The kids just did so well. Ian even seemed to improve on his vocabulary. He was speaking so much more clearly and using a lot of really good sentences. We think that all the sensory input helped him out. He swung a lot on the swing, sledded down a hill of leaves, relaxed in a hammock, climbed up and down stairs, went on nature walks, and threw the football around with dad. They all were so tired by the end of each day that sleeping was never an issue!

Jim and I enjoyed the complete family time. We were able to focus ALL our attention on the kids. No phone calls, no computer, no cleaning and laundry all the time.......it was great.

Oh, and I almost forgot to mention how Ian used the potty. At home, Ian sits down on the training potty (not ideal because he's actually too big for it). At the cabin they have shorter toilets. Ian must have caught onto this because he went tee-tee standing up! And he went A LOT! We would set the timer and he would go pretty much every time. We even came home with leftover pull-ups. So we've decided that next month we are going to get a shorter toilet. I think it's going to put the potty training into a fast gear. And hopefully it will be a push for when I start Benjamin too. We could just see the 'proud' look on Ian's face everytime he went standing up.

So that was our trip.

Friday, March 13, 2009

Just For You, Kathie!!

This entry is for my wonderful friend, Kathie! I'll update on Benjamin in my next entry.

Last weekend Jim, me, the kids, and our friend Kathie went to a really fun Irish Festival. We don't normally take all the kids out to something like that, especially if it means missing nap time. However, Ian loves music. He and Avery are especially fond of a CD and video we have of a group called Celtic Thunder. They have a few songs they listen to over and over and over. So, when Kathie brought up the festival, we thought it would be fun for the kids. So, off we went.

The drive there was a bit worrisome. Ian didn't have a good time in his carseat while Avery got to sit next to Daddy (I drove and Kathie sat up front with me. Dad was in the back of the van with Avery). By the time we got there, he had about had it (jealousy, I'm sure). Then we didn't think we were even going to make it to the entrance. Ian just didn't seem like he was going to participate in any of the plans. But, we did make it to the entrance. And once Ian started hearing the music, he was hooked. I wish I had pictures, but we just got a new camera (a really great one), but I don't know how to get it hooked to put pics on the computer yet. Anyway, Ian and Kathie had a great time dancing together. Ian would go find a seat all by himself and just seemed so mesmorized by the music. Avery was a bit bored. She wanted to be able to play somewhere. She wasn't in to staying in one place to listen to music for any length of time. However, she did enjoy watching the Irish dancing. We finally found a courtyard area for her and Benjamin to run around and play. The kids lasted 4 1/2 hours before we knew they were through! Must be a record! We were thrilled that they did so well. And Kathie, you were awesome with the kids! Thanks for wanting to go!

P.S. We are leaving to go out of town for spring break so I'm taking a spring break from blogging too. This won't be another 3 month break. I'll be back on late next week. For those of you having spring break coming up......ENJOY!

Wednesday, March 11, 2009

Avery Update

Well, Avery is still just a sweet little princess......with some attitude. We're working on that. Who can blame her though with bro hitting on her and pulling her hair??? Some days I wish she would just have some super power strength and club him a good one. Problem is, he would probably just laugh. Anyhoo, Avery and I had some mommy/daughter time away at a hotel this past weekend. The goal was to do whatever the little princess wanted to do, with no interruptions. So, what did she choose do, you ask? We checked into the room, took our shoes off and jumped on the bed. Then she headed for the remote and pushed buttons like a mad woman. Then we went out to eat and got icecream. Then back to the hotel where we painted toes, did crafts, played games, took a bath, pushed buttons like a mad woman again on the remote, and ate princess snacks while drinking a princess drink. She loved it. Then around her bed time (which she told me when that was) she was ready to go home and see daddy. It took her a while to catch on to the plan, which was to STAY ALL NIGHT. When we checked in I had tried to talk her into getting her own bed, but she would have nothing to do with that. She said she might get scared. So much for mommy getting a good night's sleep. So, we got the king.....and she slept right next to me....then perpendicular to me.....then partially on me.....then perpendicular again. I didn't sleep too great. But we had a wonderful time and she's ready to do it again.

She's still doing great in her preschool. She loves to read the letters of words and read numbers. She can say her phone number. We're working on the days of the week. Also out of the blue, she told me when her birthday is. I didn't even know she knew. She loves to go in Ian's room at bedtime and say a night night prayer and sing to him. It's really cute to hear her pray. She thanks Jesus for EVERYTHING! Last night, she thanked God for Uncle Josh and asked Him to protect his heart and his BOTTOM! I almost called Uncle Josh and asked if there was a problem with his bottom.


Latest Avery sayings:
**When we were getting on to the elevator to go up to our room at the hotel (she HATES elevators), she stood outside of it and said, "Mommy, I don't want to get on the ALLIGATOR."
**There's a song we listen to that says, "Come where the peaks meet the sky." However, when Avery sings it, it turns to, "Come where the PIGS meet the sky."
**The other day she asked for a video that we don't even have at our house. So, I asked her, "Avery, where did that come from (meaning where did that thought come from)?" She waited a minute then said, "It came from my mouth."

Tuesday, March 10, 2009

Update on Ian

I figure since I hardly have time to sit and blog these days, maybe I should just update on one kid at a time. You'll understand after you read how long Ian's update is.

We're having our go around with ARD's and IEP's now. I've been gleaning off all your stories and trying to learn as much as I can about what I can expect. With him being in PPCD for 3 years, everything was pretty basic. Now we're talking kindergarten for next year. I have to say, we are extremely blessed that he is going to the same school where Daddy teaches. And we're doubly blessed that he has had the teacher he has had for the past 3 years. She REALLY cares about him and our family and wants so much to see him go as far as he can. And he has a principal who adores him and is pushing for a lot more than most would.

The last ARD we had was originally supposed to be his placement ARD. Because Jim teaches in the system, we knew that Skills would be one of the possibilities. Shortly before the ARD date I was out jogging and was going past what would actually be his 'home' school in our neighborhood. All of a sudden I felt this HUGE weight hit me and my mind went crazy. By the time I got home to try to share it all with Jim, I was in tears and could hardly spit it all out. You know the stuff I'm talking about....it all starts with "Oh my, what's the best thing for him for school next year." Then it quickly flips to "I'm so sad at the thought that he may never get married and have kids." I know, I know....SLOW DOWN SISTER! Oh, I forgot to mention that previous to my jogging experience, we had a meeting to discuss the results of all his evaluations. That was the first time the school system had actually given him the label of MR to receive services. It didn't come as a shock, but to a mommy's heart, it hit hard. Luckily, I'm able to realize that it's based on a bunch of really idiotic testings that only allow for one correct answer to get the point. It doesn't leave any room for those who can think outside the box and still have the answer be in context. And it's the label that will get him the services he needs. It's not his life label.

I've never sat in on a Skills class before and so had visions in my head of no academic learning being done. I know Ian will be capable of learning to read, do some math, etc. So the thought of me sending him to school, paying for school taxes, etc. to have him not even be taught those things just infuriated me. So, Jim suggested I go observe a Skills class. The school he goes to now doesn't have the program, so I called his 'home' school which does have the program. Boy, did that open a can of worms! The next thing I knew, the 'home' school was calling his current school and one person in the district wants to know who said what to make me think he would be in Skills....yada, yada, yada. So then I was so worried that I had gotten his teacher in trouble, then the whole system thing got me mad again.....not a good week. I finally talked to the Skills teacher at the 'home' school and explained to her that nobody at his current school led me to want to observe. It was mine and my husband's decision. She was very nice and just explained that the head of the Skills program for the district couldn't imagine why I would want to observe at that particular school because Ian is higher functioning than what is offered at that school.....they have the low end of the skills program. Long story short, I decided not to observe at that school, or any other for the time being. I was already drained by the drama.

The next thing I knew, his placement ARD turned into an Amendment ARD because someone else from the district came to observe/evaluate him. I've decided that they just don't have a good program for kiddos with FX but not autism. Under their testings, he did not qualify as autistic or ASD. He's way too purposefully social. So, we're pushing for a full-time shadow for him for next year. I know there are a lot of you who want your child in a regular ed classroom and for them to receive all the same things as a typical child. I don't have a problem with that. But that's not where Jim and I are. Because we don't have him on any noticeable dosages of medications, he is sooooo hyper that it wouldn't be fair to him (or the ONE teacher) to be in a classroom with 20+ typical kids. He's just way too impulsive, loud, just wants to have fun, etc. Not to mention how over-aroused he would get with that many kids. Okay, enough about all that. I'm anxious about his next ARD and curious to see what they will have for us. Oh, he did qualify for music therapy and started it this week. I wish I would have known about it earlier in the school year so I could have pushed for it then. I never even knew they had it.

And thanks to fellow blogger Umma, we will be starting Ian on folic acid therapy. I'm going to call his neurologist today to talk to him about it. Will let you know how it all goes.

Potty training is still going.....very well as far as tee-tee goes. His sticker calendar is FULL everyday. He still won't always go completely on his own, but he generally responds well and quickly to the timer being set. Most of the time he'll tell me to set the timer! Poop is still a no-go. He'll get there. We're just thrilled with any progress that gets made. He loves to see Mommy so proud of him after he tee-tees. Oh, if anyone has any grand ideas how to get him to go on the 'big' potty, please let me know. He only wants to go on the 'little' potty. Well, he's really too big for it. He's tried to stand up at the 'big' potty, but he won't stand close enough to pee in the toilet. And because of his balance issues, he won't use a step stool to try to sit on a potty seat on the toilet. So, needless to say, when we go anywhere, pottying doesn't really happen. UGH!

To sum it up (I know, finally), Ian is really doing great. He still has impulsivity issues and some agression issue with brother and sister (he makes them cry a lot), but he has come so far. His vocabulary and enunciations are great. Even strangers can understand a lot of what he says these days. Even though he makes his brother and sister cry a lot, he is also very loving toward them and likes to get involved with playing with them. Even with other kids, he really tries to learn how to play with purpose. He's still a wonderfully happy kid!

And most importantly.....SPRING BREAK IS NEXT WEEK!

Thursday, March 5, 2009

Getting Old? .....Just in Time


It seems, according to Avery, I'm getting old just in time. The other day we were waiting in line for drop off at school. She noticed some dry skin on my face and asked, "Mommy, are you getting old?" The funny part about all this is that I turn 40 later this month. You think she knows????????

Wednesday, March 4, 2009

TO: pddnosmom123

I'm gonna blog again later to catch up some...okay a lot. But I want to comment to PDDNOSMOM123 who posted a question on my last entry. I haven't even checked my blog lately, so I just got it. I tried to click on you, but it didn't lead me to a blog. Hopefully, you find this.

Ian was diagnosed at 18 months old. He was not 'diagnosed' with autism first, and he still does not qualify under the checklist of autism from the school system. Someone (sorry, can't remember who) replied back to you about the difference between an autism description and FX diagnosis. I agree that I would ask for the FX test. Although there are similarities between the two, there are also differences. When dealing with each, it's a good idea to know exactly what you're dealing with....especially if it's both. Not to mention the services you could receive. Please keep me updated.