Maybe I'm Over-Thinking It

I tend to like to think things through, probably to an extreme extent in some cases.  But some things do deserve that thought time, such as Evan's transition to kindergarten next year.

Yes, my little boy is going to kindergarten.  I know, it's the cry of most parents, but I still have to say it, How did he get so old so fast!?

We had the conference last week, and I thought I knew what I wanted heading in.  We have two elementary schools in town; I work at one of them, and he goes to preschool at the other.  The one I work at is the one that he should attend for kindergarten based on where we live.  But, the other school has more special ed. options.  So, a couple of weeks ago, I visited the classroom at the other school that I was fairly certain was the one for Evan.  I observed for about an hour, and my eyes watered up as I sat there thinking, yep, this is the right place for my son.  Low number of students, mainstreaming, swing in classroom, sweet sweet teacher, etc.  Yep, the right place.

Day of conference, I'm sitting around a table with the people I work with now and people I've worked with in the past.  I'm really not sure if that is better or worse;  I'm thinking it's just different.

Lots of positive things said about Evan's recent progress which we're seeing at home as well...good stuff.   

 So in a nutshell, there were 3 choices presented.  The most restricted class was eliminated from the get-go; we all agreed that wouldn't be the appropriate place (although I LOVE that teacher!!!).  So it was a choice of the classroom I visited at the other school and the developmental kindergarten class at our school.  And there seemed to be some leaning towards the latter.

Whoa. 

 I hadn't given that second option much consideration before the conference.  Hmm.  Maybe not such a bad idea.  When it was talked about, I  started to believe that maybe it could work...an aide, small group, a great male teacher.  Then the mother in me started thinking about, well, maybe it will work this year, but what about next?  And maybe there won't be enough support.  And maybe it's not such a good idea for him to be in the same building as me.  And and and.

So, as of today, I haven't signed yet, but I'm 99% sure that's the direction we're heading.  Yeah, 99.1% sure.

What's holding me back?  Among other things, I think the biggy is my desire to protect him...have him in an environment where he is a little more sheltered.  Have him somewhere where I don't see everything. 

Ugh ugh ugh.  

Yes, 99.2% sure.

I Hope You Get This

Dear Costumer at Local Restaurant,

Where do I begin? How about a little background. My 3 boys, 19, 17, and 4 have Fragile X Syndrome. Never heard of it, huh? Well, I understand; we hadn't heard of it either until our oldest son got his diagnosis 16 years ago.

Yes, raising ANY child is challenging. I totally agree! Like you said, we all have our problems.

You see, I think the reason I so quickly got within inches of your face to explain our situation after you offered your "advice" is because it's been building up inside me for 16 years! Crazy, right? I also had to get kind of close because it was loud in there. How ironic that I say that, isn't it, because yeah, my son was greatly contributing to the volume in the there.

Let me try to explain. Our 4 year old son sometimes has trouble diverting from the routines he is used to. We had to wait for our table, and he was a bit confused by that. Just going into a restaurant is very difficult for him right now (the noise, the odors, the people, etc); having to wait for our table was more than he could handle tonight. Like I told you, he was adjusting. You probably noticed he was doing much better after we got a table. (I'm sure you noticed; we had such a great view of each other.)

Back to the "building up inside me for 16 years." You see, you're not the first person to offer "advice" that's been clear enough for me to hear.

You are the second.

Yep, 16 years, and you're only the second person that has given "advice" to our family. Have others said things over the years? I'm going to guess, yes, but they made the decision to give their "advice" under their breathe, or maybe they just kept it in their head, so that I couldn't hear it. I respect that, but would appreciate it even more if people could find more constructive things to do with their time than to judge the situations of others.

And, believe it or not, we've had people give us compliments about our kids.

I know, you're in awe.

That first piece of "advice" I overheard? I was in line at large store, the kids were approximately 5, 3, and 1 (we also have a daughter, she was the 5 year old). As we were going through the check-out, both of the boys were in the throws of a complete meltdown. How I even heard the "advice" the woman behind me in the check-out said to the other woman, I'll never know; my kids were so loud! I'm guessing she wanted me to hear it, so she said it in a manner that would put her voice over that of my boys. Her words have stuck with me all these years:

"I hope she doesn't have any more kids; she can't handle the ones she has!"

Yes, I remember it verbatim. And I think the reason for that is that back then, I was weak.

And I agreed with her.

Well, not really...at least not always, but in that moment I did. So instead of saying anything to her, I brought my screaming kids to the van and cried along with them.

And to this day, I wish I could chat with that woman, face to face...

Ok, so tonight. Yes, he was loud. I agree. Yes, I needed to bring him "out those doors." I was planning on heading that way. Having to chat with you ending up delaying that happening.

Oh hey, guess what, Ms. Customer!?

It's Autism Awareness Month. Many children with Fragile X have autistic characteristics. Some have autism.

Consider yourself a little more aware about hidden disabilities now than you were before you walked into that restaurant.

You're Welcome!

The Snowy Day

Another snow day we'll have to make up, but I'm okay with that. Today has been a GREAT day so far!

This winter, we've had a fair amount of snow, but Evan hasn't wanted to participate in any snowy outdoor activities. We had attempted outdoor adventures a couple of times, but he only lasted a few minutes each time, before he would let me know that he was done.

Ironically, his favorite book right now is The Snowy Day, by Ezra Jack Keats. He, my daughter, and I all have it memorized. It made me kind of sad that he loved the book so much, but how could he fully connect to it, when he hadn't experienced those basic winter activities?

So today, when we were fortunate to have this snow day from school, I decided early on that we were going to live that book today.

Because he slept in this morning, when he woke up, it was already light out. I went into his room to greet him, and after our "Good Morning!" I carried him to the window and started reciting the first page of the story when the little boy is waking up and looking out his window and seeing the snow, only I inserted Evan's name. Big smile on his face.

Midway through the morning, I excitedly explained to him how we were going to go outside, including the different events from the story. He respectfully disagreed, well, okay, he whined a bit, but I kept the enthusiasm up.

And here's the rest of our story...

Evan and his mom headed out the door into freshly fallen snow in the backyard.

Crunch, crunch, crunch!

His boots sank into the snow.

In the distance, Evan spotted something...

It was a stick, poking out through the snow. He understood the endless possibilities of what he could do with this stick.

He first decided to drag the stick in the snow to make a track.

He then ran to the tree with the stick raised high in the air.

Smack, smack, smack!

To his delight, the bright, white snow fell softly onto his coat.

With his mother's help, Evan made the best snowman he had ever seen! He helped scoop up the snow and pack it on to the small ball of snow to make it bigger and bigger and bigger.

Scoop, scoop, scoop!

Pack, pack, pack!

After pushing the arms into place, they stood back and looked with amazement at their new friend, Mr. Snowman.

Evan thought about going inside, but soon discovered that there was more fun to be had.

He turned around to see the silliness of his mother while she lay in the snow waving her arms and legs. To his delighted surprise, when she stood up, there was a snow angel on the ground!

Before heading inside to the warmth of the house, Evan looked all around the yard at the beauty of the snow.

He knew that one day, he would happily venture out into the snow again.

Crunch, crunch, crunch

A New Skill

Today, Evan demonstrated that he understands an important childhood skill: he went in the computer room and closed the door so that I couldn't see what he was doing. Yay!

We got the kids a portable dvd player for Christmas; it's been several years since they've had a portable. The main user of it, so far, has been our movie man, Kyle. Evan loves observing his brothers, and apparently, he's been observing what this new, blue, plastic thing is, although I never noticed him doing this.

But today, he showed us that he knew how to use it. He put in one of his new dvd's, Animal Planet. He can't get enough of watching or "reading" about animals.

So I was proud of him for figuring this out, but cautioned him about the need to find somewhere to sit while viewing the movie. He wasn't too fond of staying in one place with it, after all, it's portable! He also figured out how to see his favorite part--the first 5 minutes--over and over.

Basically, he had enough of my suggestions, so he went in the computer room and shut the door. The only other time he's ever shut this door is when I'm vacuuming in the other rooms.

After having a good laugh with Chelsey about how cute this was, I went in to check on him. And after I left the room, the door shut again.

I'm so proud of this new understanding...at least for today.

Home Movies

A couple of weeks ago, John came back from his parents' house in Florida with their car and a few boxes. His mom, battling cancer, is now living with his sister in CT. One of the things he brought back was a VHS that I had sent to them...around 20 years ago! So of course, I had to pop it in the vcr; the only one we have is on the little tv in Chelsey's room.

Over the years, I've taken a lot of video, but besides maybe looking at it right then, I don't go back to look at them. So, this was quite a treat. It was Chelsey, back in the day when the world revolved around her. Wow, watching her talk and interact, at what seemed like such a young age...it was like we were watching a genius! :) We kind of forget what other kids can do. Right now, I'm so impressed with Evan's progress. It's not that "I forget" that he's not where a 4 year old should be; I guess I just don't think about it too much. Hey, that's a good thing! :)

Yesterday, day 2 of a nasty stomach bug, and I'm still taking it easy, I started watching videos on our 8 mm that I haven't used in a couple of years. This time, it was mainly Kyle and Matt, 10 and 8. Another, wow. First, hearing their voices at first was so strange; it was like I didn't remember them ever sounding like that. And then, of course, I noticed just how cute they were. :)

The really funny thing was, was that I heard them each say a phrase they both sometimes still say. They were playing with a castle, and Matt said, "You're under arrest!" He still says that at times, although it's progressed to "Get on the ground!" (he likes to use these phrases on our animals...in a good way.) Yeah, he likes the show COPS.

Kyle phrase was "I sure wish the gang could see this." The gang, of course, is the Scooby Doo Detective Agency. Yeah, that gang, for years he's been wanting to head out to Coolsville to see them. :)

I only watched about 20 minutes yesterday, and then a little more today. Evan watched it with me today...on the small screen of the video camera. He liked the part where Kyle was playing with trains, but then when it went to another part, he started tapping the screen and sliding his finger on the screen. The modern child. He's so used to watching videos on our phones and being able to stop, start, and go back to videos. He was getting a little frustrated that he wasn't getting the same results with this.

Best Buds and Evy J

The boys are out for their Christmas get together with their Best Buddies. And I'll say it again, I LOVE THAT PROGRAM! They are partnered up with amazing high school girls. For Kyle, this is his 4th Best Buddy, and she's definitely a keeper! For Matt, this is his third year with the same girl...a completely awesome person who plans on getting a degree in special ed. For these girls, it's not like they signed up so it looks good on their transcripts; they're genuinely wonderful young women. So thankful!

Evan...what to say about Evan!? Well, our nights are better!!! Finally! It only took four years, but I can say with confidence that he is now a good sleeper. He still may not sleep as many hours as many his age, but when he falls asleep, HE STAYS ASLEEP! Yay! Sleep makes such a difference in my life; it feels so good.

Words, we're hearing new words all the time, and it's music to my ears. His latest--new this week--is "yeah." Before when we would ask him if he wanted something, he would respond with "peas," so polite of him. But his "yeah" is so darn cute. He says it almost as a question; it makes me laugh every time! Another recent, and quite appropriate this time of year, "Ho ho ho, Merry Kismas," and the word that every mother waits to hear started this past summer, "Mommy!" He says that...a lot now! He's getting really good at being able to repeat words when we ask him to. It's beautiful, simply beautiful.

Potty trained, completely during the day. We somewhat had it summer of 2009 when he was 3, but then the school year happened, and it slid down on the list of priorities. As soon as summer break of 2010 started, we went straight to underwear. And within a week or two, he joined the ranks of the potty trained. I was concerned about what would happen once school started, but it's been fine. Only one accident, and it was when they had a fire drill. Night time hasn't happened yet, but right now, it's not even a concern. I'm just so excited about how well he does during the day!

And you know what? I'm thoroughly enjoying life with Evan now. Hopefully, that doesn't sound "awful," because of course, I've always loved him more than life, loved being with him, had many wonderful mommy moment with him. It's just, I guess, taking care of him isn't as emotionally exhausting anymore. Having number 4 after the other 3 were considerably older was a bit of a shock to the system. He entered our family when our family dynamics were different. The biggest change, I was no longer a stay a home mom. That definitely contributed to me feeling drained for so long. He doesn't have playmates around the house. Before, not only did I have our 3, but I also took care of a couple of others.

And yeah, getting the positive diagnosis for fx took it's toll on me, even if I was "prepared." Maybe more than any of the other reasons I listed.

Hello, Blog

It's been a few months, and what am I blogging about? Illness, well, kind of.

Evan is staying home with me today because he's throwing up...again. He had a stomach bug a couple of weeks before Thanksgiving, and then on Monday and Tuesday of this week, he had a mild stomach bug. But this isn't about how many times he's been sick, because actually, I think he's quite the healthy little boy!

This is just some frustration being let out that he can't tell people that he's not feeling well.

His note from school yesterday said he had a "rough day." He missed playtime because he wasn't cooperating for activities. It just makes me kind of sad to think about the frustration he must feel, not only in that situation, but for so many times in life when he's frustrated, can't control the situation, and can't verbalize his feelings about it. He's had other "rough days" at school, and most of them have preceded being sick (I think it's almost safe to say all of them), whether it's his stomach or the start of a new cold.

So that's it.

I'm staying home today. MAYBE, I'll get back on here so I can update all the progress he's made! This really is the only place where I keep track of milestones, besides the occasional facebook status. ;)

It's Just Different

I'm taking care of an almost 5 year old and a 7 year old this evening for a few hours. Even though I'm with kids all day during the school year, it's different having them in my house. I mean, different in the fact that I'm not used to hearing conversation in my house from young children. Different because the one who is almost five (9 months older than Evan) has asked me over 2000 questions in a 2 hour period (at least it feels like that many). Different because they are running around the house playing good guy/ bad guy. Different because they use the phrase, "I'm bored." Different because they aren't content to sit and look at a book for long periods of time...or at all (at least not while they're at our house where everything is "new" to them). Different because the WANT me to play games with them (we just finished BINGO).

Just kind of funny. Evan can be such a handful, but I'm reminded tonight that "other" kids....they're kind of tiring, lol. I mean, I knew that already.

It's just different.

A Fish Tale

He's the smallest fish in the fish tank.

Like the rest of the fish, I don't have a name for "him," in fact, until recently, I never really took note of him.

A couple of days ago, though, he got my attention...he was in the bubble tube. I got really nervous, because he looked like he was distressed...fighting his way down through the bubbles, panicking because because he didn't know how to get out. I called John in from outside because he's the fish tank supervisor; I had no idea had to get the fish out.

John opened a few things, pulled out the air bubbler thingy, and then fish gradually swam to the top of the tube and with only about a 1/4 in of water clearance, made his way out. Phew. Crisis averted.

...until about an hour later. The little fish did it again. Apparently, there's a little plastic piece that broke off of the top of the tube thingy, and he's so little, that he's the only fish we have that could fit through this new opening. Once again, I felt a little panicked, but not as much as before. Once again, John got him out. And once again, okay, several more times over a two day period, this fish ended up in the tube. Each time, I felt I had to rescue him (I paid attention to the rescue operation John had performed so that I now could perform it.)

So I wasn't at all surprised today to see the fish in the tube, only as I started to take things apart, he showed me that maybe I was rescuing someone that didn't want or need to be rescued. He quickly swam to the top of the tube and made his way out the tiny space that he had entered through before I had a chance to take things apart. Hmmm....maybe he's not so helpless after all....

But now there's a new dilemma, or at least I perceive it as being one. As the kids and I stood there watching him (it is entertaining), he kept struggling more and more going against the bubbles, trying to reach the bottom, which in hindsight, is what I think he's been working towards the whole time. And reach the bottom he did...and more. He "disappeared." He went "under" the tank.

Once again, panic set in.

Chelsey got her phone (also known as an emergency flashlight) and opened the doors to the cabinet.

And there he was.

He was below the plastic bottom that is below the gravel. Now, in this underneath world, there's very little room for movement. There's pockets of water among "ick" and rocks that have slid under there . He can't freely swim or turn around. I thought I was going to have to somehow disassemble the flooring to free him.

He proved me wrong again.

He wiggled, scooted backwards, and made his way back into the tube. I thought for sure, he was now as panicked as I had been and wanted out. So I again removed the air tube to assist him in getting out, which he did slowly, and I wasn't sure if this was a sign of how tired he was or if it was a sign of his reluctance to come out.

Phew, he won't do that again! Wrong again. After a 10 minute break, he went right back in, and forced his way to the underneath world.

Now, here's the thing. The piece where he's entering should be replaced. But, yet, I'm so "proud" of his perseverance...I've never seen such a purposeful action from a fish. He's having an adventure, although this adventure could end his life.

Fix it, and he goes back to his hum-drum life of swimming in the water. Leave it be, and he continues his dangerous, thrill-seeking ways.....

Qualifying for the Brickyard

First of all, I just put all the pictures from my phone onto the computer, and my brain was flooded with the images of the past year as they quickly downloaded. "Only" a year, but already, they're memories. At least one of those memories will make it to my blog...

The Brickyard!

We went to this race 2 days ago. It was the first race for the boys and for us. Yeah, John and I aren't what you would call NASCAR fans, but because of the boys' extreme interest in this sport, I guess we kind of are. I mean, I do have two favorite drivers...Jimmie Johnson and Juan Pablo Montoya. How did I pick them? Not sure about Jimmie (maybe just because he's good), but with Montoya, I just like the way his name sounded, lol. Really, though, that's why I picked him. So imagine my excitement and the bragging rights I had the day before the race when we found out that they were starting in the first and second position...one of them was going to win, right? Hmmm....

Let's back up, way back, like 9, 10 years ago. I'm not sure exactly when, but sometime around this time, Kyle, master of the remote control even at a young age, was flipping through channels.

And he made one of his greatest discoveries, NASCAR. Immediately, both of the boys were fascinated by these cars that were whizzing around the track. Really, before this time, I'm not sure if John or I could have named more than 2 drivers. Kyle quickly changed all that for us. So what would be the logical thing to do? Bring them to a race, of course...not. There is no way that they would have been able to handle the crowds, noise, duration, etc. So we started out slow and brought them to a practice.

I think the year was 2001, Kyle would have been almost 10, Matt, almost 8...I think. Oh how I wished I journaled back then, because I don't remember a lot of details. My biggest memory is that Chelsey was in a non-talkative mood and sat away from us, lol...yeah, she would have been almost 12. I also remember that it was a fairly quick visit.

I don't think that we brought them the following year, and maybe not even the year after that. But the past few years, they have gone. After last year, I was kind of regretting that we didn't go to the actual race...they were ready!

So this year, it was a "must." We were all going to go (minus Evan), but I waited till the week before to ask my mom to watch Evan; she couldn't. We don't have babysitters for Evan. We thought of a few that could possibly watch him, but Chelsey, who isn't all that into racing, graciously offered to watch him. I felt really badly about this, but she insisted it was ok. sigh

We asked a boy in Kyle and Matt's class if he wanted to go with us. He's someone who Matt likes to joke around with, and I was fairly certain he was into NASCAR. It was also his first trip to a race.

Summed up, it was GREAT! They had a really good time. Our seats were in the shade (YES!), we had backs to our seats (YES! although my back still screamed), and we had a good view...across from the pits but with a good view of one of the turns. This isn't to say that there weren't times when I wanted to take I nap, or that I wasn't very annoyed by the 3 smokers in front of us, but THEY loved it!

Oh, my drivers? For whatever reason, when they introduced Juan Pablo Montoya, we were surrounded by BOOS! What!? Did they not appreciate how cool his name sounds? Jimmie had a mixed review from the crowd. Matt was loving this part, because he's all about razzing.

And then when Montoya crashed, pretty much all by himself with only 14 or so laps to go, after having the lead for a huge portion of the race, they cheered.

The nerve.

Now that it's over, Kyle's choice of conversation...The Poconos this weekend. We won't be making that day-long drive.

Flavors

Today, we went with the all the kids to Flavors Coffee place. John and I often go there on Saturday, but without all the kids. We tried once this past winter bringing them...didn't go so well for Evan. The noise of the blender had set him off, and he wanted very little to do with the place.

But, time has passed, and he's improving with dealing with noises. For example, we don't have to take him outside when we vacuum anymore! I just tell him that I'm going to vacuum the floor, his eyes get really big, and then he heads to the computer room and shuts the door until I'm done. Much improvement.

So, we head into Flavors, not too many people in there, and we order our food. Chelsey and I got a blender drink even though I knew it could mean trouble. To play it safe, Evan and I went into the bathroom where it could barely be heard while the drinks were made. He didn't exactly like hanging out in the bathroom, but he was ok.

We went back to the table, and we were able to stay there enjoying our breakfast for quite a while, actually, longer than the amount of time John and I spend when it's just the two of us.

AND, someone ordered a blender drink halfway through our visit. He got a little upset, but quickly composed himself when they finished making the drink.

Yay!

I'm Going to Try, Again

I don't know why I let so much time go these days between getting on here...

Evan's potty training is going GREAT! Last summer, we were doing well, but I knew that sending him to school and to my mom's was going to be tricky...and it was. So potty training throughout the year was hit and miss; BIG miss at school.

But this summer, it's been wonderful, and he will be going back to school without a diaper!

His vocab is still very limited, but luckily, it's not to difficult for him to say, "pee," which he says for both, very convenient.

Other vocab? "No Deal!" Yes, he's been watching game shows with his brother this summer, plus Matt has that game on his DSi. Other than that, he still really isn't putting words together. His biggest vocabulary comes when we're identifying animals....still. Yep, loves his animals. I know more about wildlife from watching Animal Planet than I ever have in my life!

The older boys are doing well. Tonight, they are going to an Indianapolis Indians baseball game with Matt's Best Buddies. I adore Matt's BB, she goes above and beyond...a true friend with a huge heart.

That's it...I just really want to get back into this...I know I've said that before! lol