A Bit of Wisdom Please

"But the wisdom from above is first pure, then peaceable, gentle, reasonable, full of mercy and good fruits, unwavering, without hypocrisy.  And the seed whose fruit is rightousness is sown in peace by those who make peace." 

James 3:17, 18

As another school year begins, so does another year of unknowns.  Three fragile X kids in three different schools.  A daughter who is great at comprehension struggles so very hard at math and is so very timid.  Youngest son who is over the charts on cuteness but struggles at obeying and rules and potty training (typical though) and impulsivity and basically anything that would create order.  Oldest son, who has been a people pleaser is now deciding to hang on the fence of rebellion....going just so far enough to get a reaction (I think he prefers negative).  This same son who generally seems to regret his actions, showing sadness & sorrow, impulsively scratches his brother and pulls his sister's hair, or messes up what sister has worked so hard on.  Three children whom I love and adore dearly and could not imagine my life without.

My dilemma?

In the school and out of the school, I MUST HAVE THE ABILITY TO EXERCISE WISDOM.  Wisdom within the fragile X realm (and many others) means overlooking some things the parent of typical kids would not.  It also means having zero tolerance for things the parent of typical kid would say "aww, cut him some slack".  Wisdom... knowing how much they can handle before it's time to take a break.  Wisdom... trying to learn about why they respond the way they do in certain circumstances, as well as knowing when I don't have to know why.  Wisdom...knowing when not to take them to a particular function because it will cause more anxiety than joy for them.  Wisdom...when to know when/how to confront a teacher or situation and when to be patient.

Wisdom...to know how to bless my daughter who, because she is not as negatively affected as the boys, takes on greater responsibilities.  Wisdom...to know how to explain why she has to do this or not but the boys do not.  Wisdom...to know how to get Ian to keep on reading this or that book, even through the whining and fits.  Wisdom...to know how to get him to eat using utensils.  Wisdom...to know how to get Benjamin to understand authority at home and at school.  Wisdom...to know how to roll with the punches (which I've gotten quite good at) and how to have fun with my children....even when that means pulling out the paints knowing full well it will end up on places that will just not wash off.  It means having fun with them sloshing around in the rain (which I like to do anyway).  Wisdom...how to balance everything and everyone in my family while at the same time making time for me.  Wisdom...making sure my husband and I get date nights and times to really connect and see how the other is doing in our mahem.  Wisdom....to not get lazy in this.  Wisdom.... even so much more.

 

But the most important and crucial of all is seeking the wisdom that comes from above.  All the wisdom needed listed above and all the others not even mentioned on my list can only be truly accomplished when I seek out and ask my God for that wisdom. He has given me the signs to look for to discern if I am accepting His wisdom in my life.  Read the words - I do - everytime I ask for wisdom in a situation and I try my best to be sure it encompasses these words when I follow through.....pure, peaceable, gentle, reasonable, full of mercy and good fruits, unwavering, without hypocrisy.  If I seek out seed whose fruit is rightousness, it will be sown in peace, and I will have become a peacemaker.  What a wonderful thought!

The first day I decided to use this verse with schooling my children and with my family, I prayed over it before I started to do some school with Avery.  The result?  Well, ummm, I wish I could say it was incredible.  Instead, I was an incredible failure!  We both ended up in tears....over math!  Ugh!  But with every yuck in life comes a beautiful life lesson or two if we are willing to look for them.

1.  I always try to make it a point to model humility with my children.  I apologize whenever the time calls for it.  In this case, it screamed for it.  So I did.   She, in turn (with a little help from me), apologized for her part as well.  It was a very sweet time.

2.  God led me to another verse from James:  "He gives a greater grace." (James 4:6)   My God gives greater grace.  Grace greater.  Grace is His ability to enable me to be who He has called me to be and to do what He has called me to do.

So, basically when I fail....that's okay.  I go back to Him who gives greater grace.  I don't quit.

Seriously? Vomit the last day?

Well, we are officially on summer vacation today.  Avery's school ended the 15th.  The boys' ended yesterday.

Although I know I'll still see the teachers in the hallways next year, it was so hard to say goodbye to Benjamin's teachers.  We've had this team for 5 years (3 with Ian, 2 with Benjamin).  They are incredible.  Hard to believe there will be no more PPCD for us.  It's on to kindergarten for my little Benjamin.  He walked out of school a happy little guy....no idea it was his last day. :)   He'll start ESY on the 11th and go for a whole whopping 8 or so days.  (Thank you very little to the school 'budget').

Ian went out with a bang.  Well, more like, with a gag.  Jim got a call from his teacher about 2 hours before the end of the school day.  He had vomited at lunch so I needed to pick him up.  I know if a kid vomits, they have to assume he's sick.  Well, joke's on them.  He just vomits....it's what he does.  He probably didn't like a particular smell in the cafeteria (can you blame him?).  So, I went to get him.  I can honestly say that this was the worst school year I've experienced with any of my kids so far.  It's not that the teachers/admins were not nice.  Hard to explain, but I'm sure most of you can relate.  I've learned a lot from the year though.  I took a lot of notes of how to and how not to handle certain things.

But, as for Ian, he had a happy year.  Overall, that makes me happy.  I was sad the last day because coming home early meant he would not get to say bye to the bus driver and assistant.  They were great!  Ian had them cracking up everyday when he got off the bus.  Ian starts ESY in July.  I'll have to be sure to blog about that experience....it's a whole new way for him this year.  It's a collaboration with YMCA camp.  Hmmmmm.  I had a meeting with the lady who heads the program on the school side.  Sweet, sweet, sweet, sweet lady!  Loved her!   Jim and I went back and forth about having him go or not, after learning some new information that we weren't informed of in the ARD meeting.  In the end, we decided to give it a try.  If all works well in a couple of areas, I think it'll be great for Ian.  Is there EVER going to be a time when there aren't any worries about the things he does?   Ever?   Yeah, probably not.  :)   That's okay....he's worth every bit of it!

Goals for the summer?

Avery:  Learn to ride a bike (yes, we're slackers!);  Learn to swim (swim lessons start next week)
Benjamin: Potty training (still, argh!) - I'll be happy with pee'ing in the potty.....poop in the potty would be a plus.
Ian:  Wake up later than 5:00 A.M.

Here's a few pics of boys during their awards programs:

It's Been a While

Man, I can't believe it's been such a long time since I've been on here. Hope someone still reads it. :)

Not too much to report. Mostly still worrying about school situations for next year...nothing new. Had Benjamin's ARD meeting today. Went well. He'll be in the ABLE Kindergarten Supported program. Can't believe he'll be 5 next month and in kindergarten in the fall. Too much to handle. He's my baby.

Ian's ARD meeting is scheduled for next month. We wanted to meet with the diagnostician before the meeting to discuss some things we would like to see done for next year. It's like calling a meeting of Congress just to do that. It can't just be with the diagnostician. The classroom teacher, Special Ed teacher, and the district Spec. Ed. person have to be there. Seriously?! All they really do is use a bunch of 'educational jargon' to totally confuse the poor parent. I bet 9 out of 10 parents leave an ARD meeting not having a clue about what was just said to them. O.K. soapbox done. Funny, it didn't seem as confusing when I was on the teaching end of it. :) Hmmmm.

My mother-in-law and I share the same birthday (obviously not the same year). And today is that day. So happy birthday, my sweet MIL!

Here are a few pics.

Beautiful feet, compliments of my awesome friend, Rian. Thanks so much, my friend! Are you wearing your toe ring? BFF

Officially Autumn! and more

In my opinion, in this part of the country, today is the beginning of the BEST season of the year! AUTUMN! I love everything about it. I know, I know...I say this every year. And I mean it every year. I love the weather, I love the colors, I love the football, I love the chili, I love the decrease in humidity, I love the running in cooler weather, and on and on. Okay, enough about fall.

Ian gets spelling words every week. I have to admit I giggled a little bit at the thought of Ian taking a spelling test. Boy, was I wrong! I started studying the words with him. First I would have him say the word..he did. Then I started saying the word and had him spell it as he was looking at it..he did. Then I would have the list in front of him and say a word, but not point to which one I was saying. I had him find the word in the list and spell it..he did. Then, I gave him the words orally and had him spell while I wrote what he said. He always got more right than wrong. At least twice he got them all right. So, I wrote a note to let his teacher know how we were studying. I didn't want them to just have him say the word. To me, that's not a spelling test if the student has the ability to do more than that. So, he brings home is spelling test yesterday. They gave it to him orally and the T.A. wrote what he spelled. He only got 3 wrong!!! I was soooooo proud of him!

Still pooping on the toilet. Not me...well, I am...but I'm talking about Ian. He'll disappear for a while then holler at us from the bathroom to let us know what he's done. We're on like 10 times now. Yes, he's getting a bit tired of pizza. Yesterday he requested McDonalds. To avoid a huge weight gain while potty training & avoid going broke, we bought the burger and made the fries at home. He was satisfied. Again, I am so stinkin proud of him! (pun intended) I am also so grateful that I have a group of bloggers who can totally understand the 'yippies' of this. And aren't you glad I don't post pics anymore!

Had another issue with school (well actually something T.A. did). I won't go into it because I don't want to sound like a negative Nelly. I emailed the teacher about the incident. I got a nice email back (although I don't think it was completely truthful, in order to save a butt). But it wasn't severe enough to pursue. I'm not out to get anyone in trouble, but I am out to be sure they learn about my son so they know best how to handle situations in a fair and appropriate manner. And, of course, I documented to be sure I have all the "data" to support anything that might come up. "Data" is the school system's 4-letter buzz word for the year. I got a bad taste of the word this summer while trying to work out a summer school issue. Anyway, I just want us all to be on the same side...not sure that's realistic based on the system, but, hey, it's always worth a try.

Dare I Say It?

Okay, I'm not the superstitious type, but I'm almost afraid to brag on this. I'm so darn excited, though, I'm going to! Ian has pooped ON THE TOILET for the last 4 (that's 1, 2, 3, 4 people!) days!!! He's gone in on his own and come out telling us he pooped. He's even held off flushing so we can see the proof....we told him we needed to see it to know he really did it. Well, our deal was he gets pizza no matter when or where if he does it on the toilet. So, instead of going broke ordering pizzas, Jim ordered a large and he gets a slice each time he does it. Works good so far. Oh, I wish you could see the proud look on his face! So stinkin' adorable!

I am praying (literally) that he keeps it up. He's been coming home dry and in the same underwear from school as well.

Oh, speaking of school. I talked to his Spec. Ed. teacher (who seems very caring)about several notes that have come home in his binder or on his school work. After deduction, I figured out that it was not her or his classroom teacher, but the T.A. who had been writing them. I've not met her, so I know nothing about her. But I do know they don't pay or train the T.A.'s near as much as they should. Basically, after about 3-4 notes, they became real downers. Things like "Ian had a hard day today", "Ian refused to do his work", "Ian was disruptive". Yeah, so tell me something I don't know. Now, I'm not asking for rainbows everyday. I'm not even asking for these things not to be written. I need to know it all (yeah, I'm a control freak). However, I am asking for positive things as well. Tell me what he did that was a "yea!" His teacher last year ALWAYS sent home notes telling me even the smallest achievement. Not only would it encourage me a bit, but I was also able to encourage Ian with it as well. So give me the bad, I can take it....but not without some good mixed in. That being said, here's the note that was in his binder the day after I talked to the Spec. Ed. teacher...."Ian had the best day he's had all year. He was even quiet in the cafeteria." Hmmmm, do ya think she talked to the T.A.????

From Typical to Depressing

So, a few days ago, as I was listening to my 3 FX children beautifully playing and singing nicely together, I told God how wonderful they were and how much I love them, and just what a 'typical', 'ordinary', 'everyday' life that day seemed to be. And I meant it. And of course, I still think my kids are wonderful and love them more than anything.

BUT...today doesn't seem so wonderfully 'typical'. Well, typical in the way I meant a few days ago. It's the 5th day of school. I've talked to his classroom teacher 3 times on the phone, and his Special Ed teacher 3 times on the phone and held email conversations 3 times. As a whole, this is not a bad thing. I like knowing they are keeping me in touch. However, today was a phone call I would rather not have gotten. It was his classroom teacher, and she told me that Ian has pooped three times today. Long story short, the reason she was calling about it was because neither her, nor his Spec. Ed. teacher, nor his aid knew about this 'issue'. She was very kind about it. But I told her that it was talked about in the ARD because it was an issue Jim and I were very concerned about regarding him being in a regular ed. classroom. So, WHY IN THE WORLD DID HIS TEACHER AND SPECIAL ED TEACHER NOT KNOW ABOUT IT! This is the part I HATE about everything being so new for my poor boy. Nobody knows anything now.

Find the positive...you say? Okay, here it is. At least none of the times he pooped was in the general ed classroom, so no one was there to make fun of him!

LONG and ANGRY

Okay, I know I've always bragged that we've been so incredibly blessed to not have to have gone through what many of you have with school districts with my children because they go to the school where my husband teaches...until now. It's not a HUGE thing, but I'm just afraid it'll be the first of many.

As most of you know, it's hard to just boil it all down into a nutshell, but I'm gonna try. I'm just so frustrated. This is where I don't like having my husband work for the district. At the same time, I am glad, because it helps me to see both sides. But when smoke is undoubtedly being blown....look out! This mama bear gets MAD!

So, let's start with the ARD, which went relatively well (obviously until I signed off on it, which I will NEVER do again without my 5 days to dispute). But from what we were told (incorrectly), we were under the impression that Ian could only do one session of summer school (probably our stupid mistake since he went both sessions last year). But with all the budget cuts, my husband didn't seem too surprised. So, it was decided best for him to go the second session (dates listed as 6/27 - 8/4).

Then, after school was out we received paperwork from the district's Special Ed department listing both boys' summer school dates as 6/13 - 8/4, which is both sessions. Well, we were happy. The bus people came around to introduce themselves and let us know what time they would arrive, blah, blah, blah. They had listed that Ian would start the bus second session (date listed as 7/11 - 8/4). Jim just showed them the paperwork we got from the district and they changed the dates to list that Ian could get on the bus 6/13 with Ben...per the district paperwork.

Then at the end of Ben's first week of summer school, we get a phone call from one of the teachers at summer school because some there were under the impression Ian would be starting first session, some that he would start second session. That started the whole stinkin ball rolling. So, I keep up on calling to check the status of things. I was told by the teacher that they had begun the process and that Ian should be able to start by Wednesday of the following week.

Following week starts, haven't heard anything. So, we call one of the 'higher ups' for the program. She sounded clueless in him starting and told me that based on the ARD, the "data" only supports him going second session. My husband then told me that the word "data" is the buzz word and I'd probably hear it a lot. I did. She must have said that 4-letter word at least 5 times in our conversation. By the way, this woman wasn't even in our ARD meeting. I continue to tell her that the dates on the ARD paperwork are wrong for the start of the second session. She blurbed something and basically made it sound like that was the start of the second session. Yep, I'm supposed to believe her. After a few more minutes, she finally said she would research the "data" more and get back with me. Oh, and let's not forget she mentioned she'd have to contact the ARD committee to do this....Ummmm has she forgotten that I, as parent, am part of the ARD committee????? Now, I want to be sure to add in, that this woman is very nice and I (at this point) do have respect for her, and it's a very amicable conversation.

In the meantime, my sweet husband, having to deal with both ends of it, doesn't want to make too many waves. I can totally understand that. BUT man do I feel totally alone in this. I don't even want him working on it cause I'm afraid he'll be too soft and Ian won't get what he is due to get...especially because it was the district who screwed up. Now, there are some areas I am being careful on because one of the teachers in particular should not catch the fall for this and I want to be sure she doesn't. But I don't feel like he is pushing enough. It's not like we're asking for something the district didn't already say he should be getting!

Okay, on we go. I pull out our ARD paperwork. Long story short, the "data" DOES support he would benefit from summer school. The only thing it DOESN'T support is why he should only get second session.....which has the wrong dates anyway. So, per my request, my husband emails this administrator I had been talking to and informs her of our information and requests an admendment to the ARD be started. I think the only reason he did this was because he gets angry that the district just isn't honest because basically it's all about money, not the best interest of the child, but they throw around words that they hope we have no idea what they're talking about...which is true in most of the cases for me!

I get a message from the administrator telling me after further research, the "data" supports that both sessions would benefit Ian. DUH! She would begin the process for an amendment ARD...which by the way, I do understand might be a pain for those they have to dig up to attend. But seriously, just fill out some paperwork and have us sign it! Curse those parents who have made it soooo difficult for things to be done without the districts all being so afraid of being sued! That's the reason you can't drop a pen without an amendment ARD. Uh-hem. Back to the facts. Administrator says she'll work on getting it done in a timely matter so that Ian would hopefully be able to start Monday. Ok, mama bear happy.

Okay, so another 2 days go by. The summer school teacher calls to let me know that she'll be gone next week, but she has already updated the sub for when Ian starts. Have I heard anything from the admistrator yet? NOPE. So, Jim emails her. Ready for this???????? He gets an automated response back saying she will be out of the office until the 27th!!!! That's the straw that did it for me! Mama bear REALLY angry now. Repect is diminishing. But what this woman doesn't know is that I inadvertantly got information that she WAS wrong on the start date of the second session. And I believe she knows it's wrong. That's the last week of the first session, not the first week of the last session. So anyway they want to slice it, the ARD paperwork IS wrong. And the district DID goof.

I told my husband when all this started, that I would bet him that they planned to sit on their "you know whats" and try to appease long enough until the next thing ya know it's the start of the second session. And then Ian would have missed the entire first session. He was going to agree to that bet....until he got the automated response email.

I could go on and on. But I'm really angry right now and probably shouldn't. So I'll end instead. I'll let ya know what comes next....

Cute Stuff

Isn't he adorable! This is from his PPCD class. I'm not sure what the story is, but all the kids get to dress up like scarecrows. We have the same picture of Ian when he was Benjamin's age.















This was a sheet Ian did at school. The boy can write his name....pretty darn good too! I have to admit, this is something I would never have believed he'd be doing at this point. But, I also have not had very high expectations either. I suppose this is pretty normal for most of us during this journey. But as of late, I have learned to start raising the bar. So, when we do his homework, I really push him as far as he'll let me. I've been so proud of him. We got a note from his teacher last week that was soooo encouraging. She said that he reads all his sight words and that he's getting close to counting 5 objects one-to-one correspondence (touching each object when he counts it). My peacock feathers were quite proud!

Avery is doing great in school as well. I'm bummed that this private school only goes to kindergarten. I would love for them to add grades. She is really challenged and doing good meeting the challenge. Her writing is improving, she's trying to spell words on her own, and she does an awesome job at reading. I have also really enjoyed becoming good friends with a few of the moms from last year and this year. We've started meeting once a month for a "mom's night out". It's been great.

Thanks to great friends and family, I have been able to go to all three kids' first field trips this year. Makes for some really cute pics!

Ellie, the dog, is doing pretty well. Still in puppy stage. We went and had her spayed a week and a half ago. She developed this ping pong size lump on her belly. I knew a small lump was normal, but this seemed a bit large. So I took her in and they gave her some antibiotics for it and said it was more than likely due to over-activity. Bad parents! Well, come to find out, while I was gone for 4 days, Jim was making sure everyone, including the dog, was happy and well-exercised. Oops.

Okay, that's my update on things for the most part. Til next time....

Catch Up Time

Summer is going pretty good so far. Ian is doing extended year and has 2 more weeks left. Since its from 8am-2:00pm, that leaves a lot of time spent with Avery and Ben together. They always play really well together and I think have enjoyed their time. But it's always nice to hear, "when will Ian be home?".

This past week, Avery did a Princess Ballerina day camp Monday-Thursday. She really enjoyed it and looked darn cute! They had a 30 second 'recital' the last day. Avery completely froze. Oh well. She was still cute.

We took Avery and Benjamin to a nearby mini-aquatic park. It's a great way to beat the 98 degree heat without having to endure the bigness of a water park. Of course, Benjamin waited that day to have his first poop until about 10 minutes after he'd been playing in the water. No biggy. Just changed and went on as usual. They've also been swimming in the little backyard pool. That's a nice easy way to beat the heat as well.

Of course, they've all been swimming at Grandma's a few times. And of course, I forgot to take pictures each time. I always like to get their 'first swim' of the summer. So, pics will say first swim, but it'll actually be later. Who'll know?!

We've gone to visit my family once since school's been out. My newest niece is just adorable.

Jim leaves for Chicago to visit his dad next week for a week. So, I'm planning my 'time alone' today at the pool. No kids, no noise, just me.

My niece on Jim's side left yesterday to live with her dad. It was a sad day. I won't go into how all worked out that way, but I'm sure if she's going to live with her dad, you can guess the jest of the reason why. I know it's absolutely the best thing for her. She's actually been living with Grandma and Papa for quite some time now, which has been great. But life was just too 'unknown' and topsy-turvy here. I know she would have rather stayed here and stayed living with them, but she needed to get away and start a new, stable life. We'll still see her when she comes back to visit, but it's just strange now to know that we won't see her as often. I'm just thankful for the closeness of our relationship. Rambling now.

I get a mom's night out tonight! So excited. These are some new mom friends that I don't get too see all at once too often, and they are so much fun. Looking forward to it.

I think that's about it.

My Boy Can Read!

Oh yes, I am extremely excited. I think I scared the pants off Ian. I think I told ya'll about the Bob Books. If not, they're great, in my opinion. I've been using them to help start Avery into reading. They keep with pretty much the same words within a book, keep a lot of them into the next book while adding a new word or two and using a new word family.

Well, Ian has this thing they do from school. If he reads 10 books in the month, he gets a pizza coupon....could it get any better for him! He's made it one month, but I've had trouble getting any books on there the last couple of months. Obviously, I don't wait until he can read the book fluently by himself (he might be in 3rd grade by then :) ). So, I consider his abilities when deciding when to write the book down as "read". Well, I decided to try a Bob Book since it's a great beginner. I pointed to the words, and here's what HE read, totally on his own. "Dot had a cat." Next page: "Cat had a hat." And he continued to read the rest of the pages (about 6). He got caught up on 'sad' (called it 'said') and 'on' (called it 'no'). It was very obvious after watching him read the book that he has been learning the site words at school very well.

After he read the first page, I screamed...yes, screamed. He looked at me like I was nuts. We high fived over and over and I told him how proud I was of him over and over. He looked like a very proud peacock. After I showed Jim what he could do (he usually thinks I exaggerate until he sees it himself), he told his teacher and the head of the program. They wanted me to send the book to school so he could read it there too.

Then, yesterday, Ian's aid told Jim something he did. They had 2 sets of cards. One set had shape words on it (trapezoid, rhombus, circle, triangle, square, rectangle). The other set had the shapes on them. He was to match the shape names with the correct shape. He read each shape name and matched it to it's correct shape. He did call the rhombus a diamond...that's because it looked like one the way they drew it. :)

I was thinking a lot about Ian last night on my run. And about the rest of you. I was thinking about how much rejoicing we've all had and great it has been to share it all. I was thinking about how the Lord really uses the little things in life to remind us how big He is. I don't know where the rest of you stand, but I know without a doubt that I would definitely not be seeing things the same way if it were not for my Jesus. Do I wish sometimes ( a lot) that I had 'typical' kiddos? Sure. I'd be lying if I said otherwise. But would I ever change my kids or switch them out? NO WAY! Life will always have it's tough rides (whether I had FX kids or not). So why not learn to watch for these wonderful moments and let them outweigh the heavy ones! Something I have to continue learning everyday. But I sure feel like I'm further ahead than I was on diagnosis day!

Day 2...Kid Update

Two days in a row...so far, so good.

This is more of a kid update. We started Benjamin on folic acid therapy recently. He's been gaining some words here and there, so I was hoping by starting it, maybe he would soon start putting 2 words together...if he responds the way we've seen Ian respond to it. He was so cute the other day because he imitated what he always hears Ian say after a video has stopped..."uh-oh, stopped!" So cute! I also just got loaned to me an auditory device from our early childhood intervention program. Or maybe it's called augmentory...not sure. Anyway, it's suppose to help with language by having him work on making a choice between 2 items, push the button with the picture of his choice, and hearing the item (plus, we'll add the word "please" to make it 2 words). Goal is that since he's a good imitator, he'll start to imitate what he hears on the device.

Benjamin has also the process to begin the PPCD program (same program Ian started in) at school. As I look at Benjamin, it's so hard for me to imagine Ian that little starting school (Pre-K). As soon as he turns 3 in April, he can start the program. We're so excited to be able to be working with the same teacher Ian had for 3 years. She's just wonderful. And, of course, there's a lot of nervousness because Benjamin and Ian are so different. But I've no doubt it'll be great for him.

Avery is just doing wonderfully....well, if you take out the huge amount of 'attitude' she's gained. :) I was so proud because her Pre-K sent home a note letting us know the kids will be working on learning their phone number....Avery already knows hers, and her address. Hopefully she'll 'show off' her knowledge instead of being shy and acting like she doesn't know it. She's been such a good big and little sister to the boys. She's so loving and caring toward them (when they're not fighting of course). Her and Benjamin are best buds.

Ian is doing great in school. We started working on recognizing numbers at home. I figured out that he can count really well, but he can't recognize that a written number actually stands for something. So, we've been working on the #1 for a couple of weeks now. I made this huge #1 and put it on the wall. Then I spelled the word out and put 1 dinosaur with it. Everyday we would go over it. Everyday he would say every other number but 1. We had a breakthrough 2 days ago! He only called it a 4 before then calling it a 1. I was sooooo proud!

We went to the neurologist a few weeks ago (which is always a waste of my time...gotta find a new one). I told him we would like to switch him off the guanfacine and back to clonodine. Of course, he didn't argue with me (since I know more than him in this area). We think it has helped him out at school by taking partial dose in the morning, then another 4-5 hours later. We've loved it at night because he's practically back to wanting to put himself to bed.

Once again, I'd better end before you decide to quit reading!

New Attempt

Okay, I've been out of the loop for a long time now. Thanks to encouragement from my friend Kathie, I'm ready to start making time for this again. So much going on. Bummer is, with such an open blog, I don't feel safe to post some of it. So, those thoughts and feelings stay to myself...and privied friends.

So, I went scrapbooking this past weekend to the same place I blogged about back several months ago. My friend, Jill, did a wonderful job organizing it, as usual. This group of women was competely different from the usual twice a year crew. Both are unique and fun and great in their own ways. This happened to be a group of 10 others, most of whom I knew the names, but didn't know personally, or barely knew. They happened to be a group I've highly admired for their servant hearts and uncompromising godly characters. So, I felt a bit intimidated going in. Everyone, including myself, was so incredibly blessed by the time we spent with each other. Lots of fun, fellowship, meaningful conversation and just plain silliness. Did I get much done? Ummm, no, but that's okay. I'll be going again in April. Maybe I'll catch up then.

Next thing: My niece (the 20 year old that got married last year and was diagnosed as a carrier) just had her baby this morning at 12:20am. She had a baby girl and named her Adelin Sage (not sure how to spell either). I can't wait to see her.

Next: Ian's program coordinator asked Jim today if we thought we might want to keep Ian in kindergarten another year. AMEN! That's exactly what we were going to ask for.

Next: Our family is transitioning to a new church that has (so far from what we've seen) an incredible special needs program called Special by Design. Although we adore our previous church, we have noticed that we have been so 'overwhelmed' by life that other than attending church on Sundays, we have not sought out ways to serve or fellowship. Even with our homegroup, we started alternating each week between the 2 of us because it gets hard on the kids. So, we heard about the caring SN support at this church, decided to attend, and are now looking for ways to serve to see if the Lord leads us to stay.

I think if I don't end now, this might end up being way to long for my jump back in. So ta-ta for now.

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!?

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!

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.

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.

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.

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!

Oh, It's Been a Good News Week!

I adore weeks like this. First, the weather allows for open windows. Next I get great news about my kids.

Week before last, I had been getting not-so-great reports from Ian's teacher. This was after we thought he was improving on the Strattera. On top of that, his nights had drastically began to change, for the worse. He was a lot more irritable and aggressive. So we called the neurologist, who then up'd the dose to 20mg. I don't want to make an assumption since he's only been on the new dose for less than a week, but here are the reports:

Ian is being pulled out of PPCD for 1/2 hour a week, with an aide, into a real PK class. I have had a good report both weeks. The other day, Jim came home and said that the PK teacher wanted to be sure he told me that they watched a movie while Ian was in there, and after the movie, she asked some questions. Ian answered 2 questions....correctly!!!!!! SO excited.

Then his teacher told me that he VERY CLEARLY AND VERY CORRECTLY said, "Mrs. K, Susan hit me." And she commented on how he can read his classmate's names....she even had me watch him do it. His nights have amazingly improved. He still impulsively hits, but will say he's sorry a lot easier (still with prompting). He has been playing more nicely with toys. And, some words were on the TV (I think with Word World), and Ian pointed to the word "dog" and said "dog". I love these moments!

Benjamin's (he is 16 months old) ST and his service coordinator for ECI came out last week to do a DAYC test on him, which would tell about where is his developmentally. Results:
Adaptive - 16 months, Fine motor and gross motor - 11 months (still not walking), language expressive and receptive - 12 months, personal / social - 20 months, cognitive (the biggy for me) - 16 months. Wahooo was all I had to say about it!

Also, we have been trying to work on some sign language with him, but he just never seemed to 'get it'. He would always just look at my hands, or grab my hands as I would do hand over hand with him. WELL, the other day I cut up some more sandwich for him, asked him if he wanted more (I didn't do any sign), and he signed "more" to me!!!!!!! EXCITED! Avery just looked at me and asked why I was screaming.

Avery has had some very good progress with pooping in the potty. She's kinda on the regressing side again, but we just hang in there and praise her when she does it. Not to sound gross, but when she does poop in the potty, it's like the size of Manhattan! Why on earth would ya wanna hold onto that!?

Stuff Again

Betsy asked if Avery was still potty trained. Very good question. Well, no more poops in the potty since the big one. And, a day or so after I did my bragging to ya'll, she wet THREE TIMES in her panties. What's up with that? She must have been having an emotional day that day. Since then, she's still doing good with the pee part. School starts for her the last week of this month. I'm just gonna pray she doesn't have to poop while she's there. I guess I'll find out the true meaning of potty trained from her teachers!

Avery saying: I was going to get on the treadmill this morning and Avery was going to fingerpaint. She asked me if I was going to work-out. I said, yes (but quickly changed my mind when I felt how sweltering hot it was!). She grabbed her fingerpaints and said proudly, "I'm going to work out my fingerpaints."

I can't believe Ian's ESY is almost over. His last day is this Thursday. I have to say, his time there has way exceeded my expectations! I've been very pleased. He'll start his last year in his PPCD program the end of this month. I don't want to think about the future.

That brings up another stress point time. Drugs. I know you've all dealt with them or the thought of them. Ian will turn 5 this year, and I know that reality says he can't concentrate or sit still unless he's sleeping....even then, it's debatable. When he was diagnosed and I started learning more about it, I was absolutely against him ever being on drugs (other than the ones that help with his sleep). I saw too many kids, FX or otherwise, who just totally lost their personality once on drugs. I can't stand the thought of this for Ian. He has such a great personality. It makes me cry to think of him any other way. However, it also makes me cry to think of him having to go through life as hyper as he is. It's like his brain just never stops being on overload. He's beyond HDHD. It hurts to think of how he must feel having to live with it. Anyway, our neurologist is a great guy, but not very knowledgeable about FX. We're going to see another one that has been recommended. I don't want him medicated by anyone who doesn't really understand his diagnoses. Truth be told as well, I don't know how long the rest of the household would stay sane if Ian doesn't get help. He's only getting bigger and stronger. Anybody have any words of wisdom for me?

Can't they just stay young?