Sunday, January 31, 2016

More Great Academic News

So I already mentioned the improved reading skills we are excited about. The other thing that they do to track students is a computerized test called the MAP test. (okay, so I have no idea what the letters stand for but I am sure it's something). In this case, the students use a computer program that inches them along seeking to find the point where they are no longer answering questions correctly. Once it reaches that point it gives them a standard score or number.

Disclaimer: I am not intending to insult anyone's intelligence, but the teacher in me just feels the need to be sure I'm clear.

The standard score is then turned into a percentile by tallying a large number of students of the same grade and time of year and see where they fall. This means that the percentile rank has nothing to do with a percentage, which confuses some people. The easiest way to translate what a percentile rank really tells you is to think of it as a room of 100 students. If your score is considered the 75th percentile it means that your score is better than 74 of the other students in the room and that there are 24 other students who scored higher. Therefore, you can think of a percentile of 50 being perfectly average.

I promise I am going somewhere with all of this so just hang on.

In Kindergarten Ayden Jane started taking this computerized test. I sort of cracked me up because the kid did not even know how to use a desk top computer with a mouse let alone take a test on it. Anyway, she started out with scores in the 25-30 percentile range and I thought that was pretty decent. As she went through first grade she seemed to settle in at about the 40-45th percentile. Hey, that nearly average!

So this year in grade 2 she started off right in the same range she left off in grade 1 so I was pleased. She was continuing to progress at the same pace as her peers so all was good. Winter testing was last week. I can honestly say that if she tested low I would not stress over it. I will, however, celebrate the victory of jumping up to scoring 50-55th percentile on both language and math! Now, do I really think that this one test is an sort of accurate measure of Ayden Jane's ability? Nope.

I think that there is still a gap between what Ayden Jane knows and what she can express or use. I do believe that this gap is closing and that is actually what the rise in percentile rank shows. I think she has been smart and known a lot all along but is continually improving in her ability to use that knowledge and communicate it.

So, if you have hung in here this long, the take home message is this. Our kids take in so much but from the start seem to have trouble showing us all that they know. I think it happens often that people under estimate what they know or how smart they are because of this expressive delay. So keep filling up those little brains with words and experiences and know that its all going in. Ayden Jane is 8 and she is still closing this gap! I consider that fabulous news. There was a time when I was told that as she got older the gap between her and her peers would widen as the academics came into play. I'd say slightly above grade level in reading, language and math is a great place to be and who knows? Maybe next year we will be in the 60th percentile.

Saturday, January 23, 2016

Lab Results and Reading

We got Ayden Jane's lab results back yesterday. We were sort of looking for anything that would be energy related because of the issues we had getting back into the routine after Christmas. Of course, now that the illness it completely behind her, the energy is back and she is back to Ayden Jane typical at school. Still, it was the time of year to do labs.

Results? Yippee. Happy to report all looks good. She is doing great inside and out.

As for Reading, her teacher did a "running record" the other day. This is a quick assessment done one on one where the student reads aloud to the teacher and answers comprehension questions. They do it a few times a year and track the students progress on the Fountas and Pinnell scale which goes from A-Z. Ayden Jane started second grade at a letter I, I think. That would put her just a little behind where she should be to enter second grade but nothing to panic about. Her latest assessment placed her at a level M. That translates to "exceeds expectations" for this time during second grade and "meets expectations" for the end of second grade. So basically, she has come up a full grade level in reading in half a school year. Woo Hoo.  I know that it is all a long linear scale and that's not really how kids develop but it is so nice to see those spurts along the way. Even if she were to not improve at all in reading the rest of this school year she would be totally on target for 3rd grade next year. Whew!

Not to mention her handwriting is really improving! Hoping that OT will continue next year and then she will transition to Intermediate school (grade 4-6) with not more need for it.

Yep, after a bumpy return to school after Christmas, I'd say Ayden Jane is back on track.

Wednesday, January 20, 2016

Labs and Subtraction

Okay, so labs and subtraction have absolutely nothing in common other than they are a part of Ayden Jane's life this week.

We had labs drawn this morning. Part went great and part... well, I'll just tell the story. We always do Ayden Jane's labs fasting. For whatever reason, the IGF-1 is more valid when done this way. I used to remember why but now I just accept it. The trouble with labs having to be done fasting is that, obviously, there can be no breakfast until labs have been drawn. It seems like half the time we are there, ready to go and they can't find the orders... Not fun when you have a little one and you are faced with a delay. Today was a dream for all of that. Lab orders were there, things were not busy so no major delays.

Typically, when they draw her labs they go through their kid routine and talk her through the whole draw. She has been an easy stick for the past 6 years with blood drawn at least 2 times a year. Then came this morning. The lab person checked one arm and Ayden Jane told her that's where they usually get blood. She decided to check the other. She stuck her and missed. She dug around a while and then decided to go right back where Ayden Jane told her to go in the first place. Still amazes me though, how calm she is about that sort of thing. No tears, not even really complaints. A little of an I told ya so tone but who could blame her? The lab person hit the vein no problem on that try but Ayden Jane was not bleeding very fast. Finally, the lab person straightened out AJ's arm a bit and told her, "that's the problem, you shouldn't be bending your arm." Ummm she's 8 and you never even mentioned that and she is in an adult chair which makes it pretty awkward to keep her arm straight. Again, AJ commented on how cool it was that now she was filling things up fast. Have to love her.

In the end, the lab person just said, "I'm done, you can go." Hahaha little did she know that Ayden Jane has been trained by the rest of the lab team. Not only does she get a sticker, but she gets all the stickers she wants because she rocks. Lets just say, I stepped back and let Ayden Jane do her thing and she walked out of there with at least 10 stickers.

Subtraction. It is something that I have taught to regular ed kids and special ed kids. Likely because of that experience I was not looking forward to Ayden Jane hitting the dreaded subtraction with regrouping. The great news is that she is doing great with it!! Yesterday when I sent a message to her teacher to see if there was a day better than others to miss the morning and head to get her labs drawn. The response was that it did not matter because Ayden Jane was rocking the subtraction. Woo Hoo!! I know that it is just one skill but it is so fun to hear of her doing great with things. I mean, she works so hard it just makes me happy for her and relieved that is will be an easy week homework wise :)

Saturday, January 16, 2016

Fun Winter Beach Day

The temperature broke 60 degrees today so it seemed the perfect day to spend lots of time outside. Ayden Jane and I decided to ride our bikes to the beach and look for shells. The beach is just a couple miles from our neighborhood and there is a side walk. Not going to say that we made it 100 percent gracefully, but we made it with no crashing or even moments of panic.

It was perfect weather but the tide was a little high for finding shells so we didn't walk too far before Ayden Jane was ready to head back. Well, until we bumped into some friends and then the walk was back on!

Off season on the beach is so nice. Very few people and wide open beaches. Since we rode bikes down Ayden Jane wasn't even pushing to get out into the waves. 

On the way back she was saying her leg was getting sore ... but she quickly forgot about that as we got to our neighborhood. Then as we passed her friends house and there was a herd of kids playing she suddenly felt just fine. She hopped of her bike and joined in the fun for another hour or so before supper. 

It was definitely an early to bed night as she got out of the shower about 6:00 and by 6:30 she informed us she was going to put herself to bed. Love those nights. Of course, I will pay the price in the morning with a 6 AM wake up call. Totally worth it.

Friday, January 15, 2016


Here I am a week later. Not sure why time is going so fast these days but that's okay. We solved last weeks mystery and turned the corner to good behavior last Friday. Whew.

This week in school has had it's ups and downs but more in the sort of way that kids go in January when they'd rather be on summer vacation. The downs pretty much all line up on the side of not following directions... Our Ayden Jane truly loves to do things her own way.

It's a balancing act at times. I love the strong-willed nature and independent spirit because they are who she is. They give her the desire to conquer giant challenges. They keep her working hard at something until she gets it. They give her the confidence to forge on daily and know, with out a doubt, she will succeed. HOWEVER, there are times that parents and teachers do actually know more and she needs to accept and do... "just because I said so."  Yeah, I don't think much of that has anything to do with PWS. It may be cranked up in intensity because of PWS though.

So the ups of school this week? We have conquered subtraction with regrouping. And when I say conquered I mean totally understands the concept. Not just going through a pattern she has memorized but understanding the why and when. Now, not saying she doesn't make mistakes but I'm not worried about that. She can think math. Yay!

She has really keyed into the fitbit as well. Two nights this week she was over 9,000 steps and spent the last few minutes before bed doing circles around the house. It's pretty comical. One night she even had me out after 8:00 walking the dogs because she needed lots of steps.

I had a lot of fun watching her at the soccer fields the past 2 weeks. They were starting some club or travel type teams right, close by home and Ayden Jane wanted to play. I took her out but in the end they did not get enough girls to form a girls team in her age group. She can still play rec soccer only that will not start until into February. I am both happy and sad about it. Happy because I am not sure she was really ready skill wise to play with more serious soccer players and happy to save some money. Sad because she LOVED it. As I watched I saw she was fairly lost. Too many kids in the group (50) too many oral instructions. Too many things she has never done before. I worried she would get frustrated. Each night though, she came off with a big smile and told me she had so much fun and she couldn't wait for the next practice.

Ayden Jane took the news that there will not be a team pretty well. She was glad she will still have rec soccer because she loves to play. We will have to wait while which means finding ways to keep her active through January. I'm thinking dog walks and finding shells on the beach for a friend (another story) will have to fill the gap. Plus a bit of running. Once February gets here she will be back to swim team and soccer will start back and she will be back in the swing.

Monday, January 11, 2016

Rough Return to School

Whew, what a few weeks. So fun having Noah around and spending lots of family time. Lots of things to ramble about in terms of Christmas and family... but I'm going to cover this past week of school.

Monday was Ayden Jane's first day back to school. She seemed excited to go back the few days before but trying to get her dressed and ready and out the door was an exercise in patience! She just really didn't have an ounce of focus and was taking the long way for most everything - explanations included. I figured she was just a little tired from an awesome break and finally got her out the door.

It was not a banner day at school and she ended up bringing home a lot of work that honestly should have been accomplished in school. She did it without much complaining but oh, the lack of focus and amount of help she needed. Yikes.

Tuesday she again seemed off and her teacher asked me about her skin and the itching and sores. I honestly thought it was just dry skin because it finally got cold here and the heat came on... We all were reaching for lotion. Mrs. R just mentioned how distracted she was during the day and uncomfortable with the itching. Ayden Jane was happy after school and really wanted to go to soccer Tuesday night so we went. She had a great time but mentioned her belly hurt at one point.

Wednesday our getting out the door school routine was still struggling but ... Ayden Jane was a little more hungry than typical as well and definitely more argumentative. I figured she was tired and was not all that surprised when I found her in bed by 5 pm. She woke up about 10 and said her belly hurt and she thought she needed supper.  After eating a bit she went straight back to sleep and didn't get up until the next morning.

I figured, yes, she should be all caught up and have a great day finally. Nope.... was distracted at school, out of her seat and talking. She also was easily upset. Thursday I sent her off to school and when I was waiting out front at the end of the day, I was called in because her teacher wanted to speak with me. She was very concerned, asking for ideas to explain and correct the dramatic change in Ayden Jane. Ayden Jane had melted down 3 times and one of those time disappeared. Mrs. R had let her step into the hall to gather herself and Ayden Jane took it upon herself to find a comfy bench in the third grade hall...  I had no words of wisdom. It was as if Ayden Jane lost her drive and just didn't care. We came home and she mentioned her stomach again. Shortly after that she went potty and oh my! Problem discovered.  Apparently she had been fighting the stomach virus going around. She declared she felt much better but was still a little tired after that. We didn't even bother with homework and I wasn't sure if she would be going to school at all the next morning. You could just see her start to relax Thursday night.

Friday morning she woke up with bright eyes, cheery spirit and determined to get her homework done, study for her spelling test and study for her math quiz. She blew through the homework like it was nothing. She practiced her spelling words and chose to write them down - I had never been able to convince her before. She was great. School went wonderful, she did, in fact, get 100 on her spelling test and she did well on her math also.

I can honestly say, I have never been so thankful to find out one of my kids was sick. Ayden Jane is back to her old self and doing great. It will never cease to amaze me how being sick makes all the PWS characteristics come out. So incredibly thankful that we don't life that way. Now if I can just figure out that she is sick before it is over! At this point the skin is all clear with the exception of chapped lips and she is back on track in all other ways.

Friday, January 1, 2016

Off to a Good Start

Just a quick note. You know your PWS kid is back on track when she cries because you make her come in for lunch and it's after 1:00. (not to mention she left food on her plate at breakfast) Then after you have convinced her to eat a little, her brother makes pancakes and eggs and she doesn't even ask for any!!

She sat at the table with Noah and Mckenna as they ate pancakes and eggs with lots of syrup ect. and made a list for us to go to the grocery store. Now, I admit she was have a grand time putting things on the list like a bicycle and a bunny.... Silly girl.

Wow. Still amazed what consistent quality food, supplements and exercise do for Ayden Jane. Bubbling over with energy, happy, leaving food on her plate, enjoying friends, relaxed... I could go on and on.