Cuteness to the nth degree

So the kids and I went on a massive cleaning spree today (mostly because they trashed the entire house this morning while Heath tried to work on it, but it needed it anyway). While helping Reed sort through his bag of valentines from school that has been sitting on the dining room table (and MUST.NOT.BE.TOUCHED), I convinced him to keep a few favorites and toss the rest (hooray!). This one, thankfully, made the keeper pile. How adorable is this? This isn’t the first note that has come home from the cute-as-a-button Felicity (who was his first real friend this year). I think this might be the first officially sanctioned one though (it came attached to a Valentine’s Day pencil on a school-delivered “Sweet Gram”).

felicity-resized.jpg

Time flies when you’re in over your head

I’ve been wrestling lately with feeling old. Every time I tell someone how old Reed is, or what grade he’s in, it hits me square in the face. My little brother is getting married, and while it seems like he shouldn’t be old enough to do that yet, when I was his age, I had been married for 4 years and had a 3 year old and another one on the way. My little sister will officially no longer be a teenager in a few weeks. She’s the baby of the family. Where has half my life gone? I swear time has sped up on me the last 10 years or so.

Oops, enough pity party for me. Things are great here. My computer is up and running again (well, sort of. I have a completely new one and no access to anything that was on the old one, but it’s better than nothing -which incidentally was what I had before, lol). I was referred to a possible job lead by a friend this week, so I’m excited about that. Reed’s school is having a workshop for parents of kids with special needs and the staff that works with them. I’m really looking forward to that.  There are very few major medical dramas in our immediate future (Owen has to have a repeat MRI but that’s it). What more could I want?

Well, other than for stupid Michigan to get it’s act together and warm the heck up! LOL

Here is my annual scrapbook page in honor of Autism Awareness month. I’m using it as the profile picture for pretty much every site I belong to this month.

April is Autism Awareness Month

Holy crap! Where has the time gone?!?!?

So sorry! I never meant to be away so long (yeah, I know. You’ve heard that one before, lol). The time has gotten away from me this year. A massive update is in order. We shall start with the Little One.

 Owen had his surgery (technically named a Posterior Fossa Craniectomyapparently. Better known as Decompression) on February 15. He was off to a rocky start, as they had trouble stabilizing his oxygen levels under anesthesia. They finally got started an hour and a half late, and after almost two and a half hours, they were finished. He spent a day and a half in the PICU, where he looked so pathetic.

He spent a total of 5 days in the hospital, and was his usual bouncy self by the time we got home. His incision was 2 or 3 inches long and had 5 sutures.

I am sooooo glad we had the surgery done. Before surgery, he seemed like a pretty happy, well-adjusted kid. I was concerned that we were putting him through all this for nothing, but the neurosurgeon felt it was really necessary, so we went ahead with it. Now, he is like a different kid. He giggles all the time. He speaks in complete sentences. He is more coordinated. He still doesn’t sleep much, so I’m thinking the sleep apnea didn’t go away, but I can live with that. His occupational therapist did a Peabody just before and just after surgery so we could get a benchmark. Before surgery, his grasping (hand strength) was at the 35th percentile. His visual-motor skills (hand/eye coordination) were in the 17th percentile. After surgery, grasping is now in the 85th percentile and v-m is at the 25th! And that was at 1 week post-op. His neurosurgeon warned us that it takes a minimum of 6 weeks just to get back to baseline (where he started when he had the surgery)! I can only imagine how much better it will be in a few more weeks. I am dying to get him back in to the speech therapist for another eval, but I’m pretty sure the insurance won’t pay for it, so I guess I’ll just have to keep wondering.

And now on to the Big One: Reed is doing so awesome I hardly recognize him lately. He is a model student at school, at home, and pretty much everywhere he goes. We had our IEP meeting last week (I think I might be the only parent around here who LOVES those meetings, lol). He still qualifies for services under the Autism Spectrum Disorder (duh!) and Sensorineural Hearing Loss. Which means that he will get all the same stuff next year as he gets this year (one-to-one aide, keyboard for writing assignments, and FM sound-field mostly). They will work more on weaning him off his aide next year (she’s been doing a great job of that already but he’s not quite ready to give her up completely), with the goal of going solo by third grade. They are planning to keep him in the gifted program next year, since he’s doing so well there this year. We’re not sure yet whether he will have the same teacher/classroom, or move up to the next class (his class this year is a 1st/2nd class, so he could stay there as a 2nd grader or move over to the 2nd/3rd grade class). As tempting as it is to keep him in his comfort zone with the teacher who has done so well with him this year, I don’t want to hold him back if he would do better with the more challenging material. He is doing so much better with transitions lately, that I’m thinking I might be making too much of this anyway. I told the school to place him wherever they feel he is best suited. If he has trouble in the other class, we can always move him back. He has one class a day with the other teacher now and seems to like him. He’s never had any problems in there (although it helps that he goes to Mr. Paris’ class for Geography, his favorite subject). They will be retesting his reading this week, so I will let you know if there are any more developments in that department. He will also be taking the IOWA test just after Spring Break (who schedules these things?!?). It is his first standardized test, and I’m very interested to see how he’ll do. They’ve written into his IEP that he is allowed extra help and time for standardized tests, so I’m not particularly worried about that, but he doesn’t like oral testing in general, so I am a bit worried that he will refuse to answer any questions at all.

As far as social skills, this is the area he has most excelled in this year. I was concerned about how he would get along with the kids in the gifted program, but it turns out my concerns were unfounded. Reed is actually popular this year! He has actual friends, and not just “friends” (meaning every kid in the class). We went to movie night at school last night, and he had a steady stream of kids running up to him and giving him hugs (which he easily reciprocated) or high fives or just chatting for the entire hour we waited before the movie started. Some of these kids aren’t even in his class. A few were in his Kindergarten class last year, but some I’ve only seen around the halls and have no idea who they are. It seems like every time I walk through school with him, somebody greets him with “Hi Reed!” and a big wave or hug. Where did this social butterfly come from? He has really found his place in school this year. I am so pleased! If you could see my face right now, I am grinning as I type (and chuckling to myself as I look at Reed siting next to me playing video games on Daddy’s computer while sucking his thumb, so obviously he is still my Reed).

In other news: we got a new car! Hooray! It’s the nicest car we’ve ever owned, and I’m so excited about it. It’s a 2005 Kia Rio Cinco station wagon. It’s only a little over a year old and has 20,000 miles on it (we put almost 2,000 of them on it in the 3 weeks we’ve owned it, lol). I love having a station wagon again (my first car was a station wagon. I wasn’t exactly the coolest teenager, but man you could fit a lot of people and their stuff in there!). No more struggling with the stroller. No more cramming the wagon in the front passenger seat (it didn’t go into either trunk before).

I guess that’s about it for us. We don’t generally lead very exciting lives, so even though it’s been months since I updated, there’s really not much to tell. I’m slowly getting caught up on reading all my favorite blogs, and have been scrapbooking like crazy now that Heath has built me a new computer. You can bet you’ll be seeing a lot of scrapbook pages on here, lol. In fact, I’m running out of pictures to scrap, so if you’d like some scrapbook pages made, feel free to email me. Scrapping is my stress-reliever and I love doing it. =]

Downward Spiral

It’s always something around here. As I reported in my last post (a lifetime ago, I know, I know), Owen has a Chiari Malformation. We met with the neurosurgeon just after Thanksgiving, and he didn’t seem to concerned. Just to be safe, we pushed for a new MRI, and he agreed.  We got a call from the neurosurgeon a few days before Christmas and it was NOT the call I was hoping for. Owen needs surgery. The sooner, the better. He said that on average, Chiaris tend to be about 3mm. At that size, most patients don’t require surgery. Owen’s measured 15mm and is restricting the fluid around his brain. On top of that, they think he may have sleep apnea, so we have to do a sleep study before surgery.

How do you get used to the idea of your baby having brain surgery?

Progress

I went to Reed’s Parent-Teacher conference this afternoon. I’ve been looking forward to it ever since I signed up at the beginning of the school year. I love the staff at Reed’s school, and they always go out of their way to accent the positives during conferences. It’s about the only time I am guaranteed at least some good news in a meeting about one of the kids.

Today was no exception. His wonderful teacher greeted us at the door, and chatted with Reed and Owen while I filled out a survey. They she pulled out his test scores, homework pages, and notes. She started telling me what a joy he is to teach. How he is surprising her every day with his accomplishments. How well he gets along with the other kids in the class. He is social, engaging even. Wow! Then she pulled out the results of his reading tests.

He is reading between 6th and 7th grade level.

Yes, you read that right. My just-turned-six-year-old first grader is reading at a junior high level. His comprehension is lagging behind that a bit, but at a 3rd – 4th grade level is clearly not something to be concerned about. Her biggest concern is keeping him challenged. There aren’t many books she can offer him that will challenge his reading ability, without the subject matter being way over his head.

If I don’t watch out, he’s going to be smarter than me before middle school.

The Plot Thickens

I won’t bore you with the details of where I’ve been the last month or so. Suffice it to say it’s been a long couple weeks.

I thought Owen was going to be the lucky one here. The neurologist has declared him to be autism-free for the time being (although she recommended another eval after he turns 3 when it can be a little easier to spot Asperger’s). He has been discharged from speech therapy, and although he has started OT, he’s making great progress. Fast forward to Tuesday’s follow-up with the neurologist. I was expecting just a quick visit to update them on his progress since his visit in May. Imagine my surprise when she tells me she has finally been able to access his MRI from last November, and found something abnormal. He has been diagnosed with a Chiari Malformation. My first thought is to be completely terrified. Especially after she writes the order for the pediatric neurosurgeon and explains that he may need a surgery called a “decompression” in which they will enlarge the opening at the base of his skull. My next thought is to be really furious, because he had this MRI a year ago and they told me at the time that it was all clear. Why didn’t someone catch this last year? It turns out that this is the most likely cause of all his developmental delays, his feeding trouble, and his recent unexplained bouts of inconsolable crying (he’s probably having headaches but can’t tell us). My poor baby has been suffering, and it’s because they didn’t properly read the test. Seriously, why even DO the MRI if you’re not going to catch these things?

We meet with the neurosurgeon on November 27th. In the meantime, I’m trying really hard not to research this too much, because I don’t want to freak myself out too badly until I know what we’re dealing with. I have asked a few on-line friends who are dealing ith this condition for their recommendations of questions to ask and tests to request, but other than that, I’m trying to leave it be. Yeah, that’s not going to last long, lol.

Q: How can you tell if your child has a great educator?

A: When they write poetry about him. Today, Reed came home from school clutching a paper. I had to wait until after he went to bed to read it, because he wouldn’t give it up before then. Here is what I found:

Funny Boy
by Mrs. C.

I work at school with a boy named
Reed,
Sometimes I laugh as he’s doing a deed.
He analyzes, often
surprises,
Comes up with words of colossal sizes.

After being
in school for just two weeks
The progress he’s made has come in
leaps.
He’s sitting longer, listening well,
Taking his turn, there’s more
to tell…

As he reads a book, he may laugh and giggle.
My
nickname for him has become “Mr. Wiggle”.
Reed has taught me to be patient,
have compassion and joy-
Teaching is a pleasure with this great, funny boy.

I’ve always loved his aide, but now I really love her. The boost to his self confidence is just awesome, and it’s so great to hear how much she loves working with him.

Progress Report

I’ve been lax in posting again. Sorry about that. The end of summer and beginning of the school year has found me quite busy. We went on a fantastic vacation. Reed did so great! There was only one minor meltdown, and one destructive episode, but otherwise he was charming. Not bad for an 8 day vacation that took us across 4 states. We even had what Heath jokingly calls the “Wallyworld experience” in which the amusement park we had advance tickets for was closed for the week when we showed up at the front gate. I thought for sure that would be a deal-breaker for Reed, but he handled it like a trooper. He was clearly disappointed, but cheerfully participated in the remainder of the activities we planned for the day. Luckily, the park re-opened for the holiday weekend, so we still got to use our tickets (although we had to skip the family reunion we’ve been planning to attend all year. Oh well.).

And now for the best news of all: Reed is doing great in school! I was so sure that this week would be a disaster. We got home from vacation 45 minutes before bedtime the day before school started. After more than a week away from home, I was anticipating the transition from vacation to home to be difficult enough on its own. Add to that the transition from summer vacation to school and I was certain we had a recipe for disaster. Boy, was I wrong. He has had phenomenal days all week (school started on Tuesday). His teacher and aide have been thrilled with his participation. But hands-down, the best moment of the school year so far for me happened before school even started. We were standing in the hall outside his classroom waiting for the teachers to check the kids in. The hallway was utter chaos. Reed was looking a little anxious, but was overall taking it well. All of a sudden, a boy from his Kindergarten class last year rounds the corner in front of us. Reed jumped out from the wall, looked him squarely in the face and said “Hi Alex! It’s me, Reed. Are you in my class?” I nearly fainted. In spite of being pretty overwhelmed by the noise and confusion, he still managed to initiate an age-appropriate conversation without any help from an adult. Holy cow, where did this come from? The next morning, he stood in line with another boy from last year’s class and chatted while they waited to be let into the classroom, while his aide looked on from a distance. She commented that, while he mostly listened as the other boy talked, he did interact in the conversation as well. Woo Hoo! He’s making friends this year, not just “friends” (which seemed to mean anyone whose name he knew and could identify in the hallway at school last year).

One last, but HUGE victory to report for the week: Yesterday, our library had a special event to unveil the newly renovated children’s section. Reed loves the library, but has trouble with the basic library rules, so we don’t go often, but since there were going to be special guests reading stories and crafts and games for the kids, I decided this would be a good chance for him to spend some time with his beloved books without having to worry to much about being quiet and still. Not only did he do crafts with a couple other kids, and listen attentively to the celebrity guest readers, he READ ALOUD TO THE ENTIRE LIBRARY. Yes, you heard me correctly. One of the volunteers asked if he’d like to read a book, and he jumped up on stage, and read 3 short stories to 2 dozen spectators. He even remembered to turn the book to show the illustrations at the end of each page, proving that he realized that he was interacting with the audience. Naturally, I took lots of pictures, but it was with the old film camera (my digital’s been acting up lately), and I haven’t developed the roll yet. But you can bet I’ll be posting them as soon as I can.

*Gasp* 2 Posts in one week!

Shocking, I know. I’m kind of freaking out and I need all your help here.

I just found out that Reed is skipping first grade. They’ve placed him in the grade 2-3 gifted class this year. How can my 5 year old be a SECOND GRADER already?!?!? It shouldn’t be possible. Anyway, that’s beside the point.

My problem is this, this is the first school year we’ve begun since the diagnosis. I am unsure how to prepare Reed for school to start again. Since he is mainstreamed (he attends a small Charter school and has an EA), this class will likely be nothing like his Kindergarten class last year. After being away from school, and then it being completely unpredictable for him until he learns the new schedule, I’m afraid the changes will be more than any of us can take. How do you prepare your child for the start of something familiar yet different? I think it would almost be easier if this was totally new, since he wouldn’t have any expectations at all, but I’m pretty sure he will be expecting it to be just like last year.

Help! I have less than a month to prepare and I have no idea what I’m doing!

Happy Blogiversary to me

Well, I’ve lived through another year, and I’ve got the blog to prove it. Of course that doesn’t amount to much post-wise, since I’m such a lousy blogger, but it’s really weird to look back on my first posts and see how far we’ve come in the last year.

Virtual cake for everyone!
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