Swinging

A hemi mom in a group I'm with, asked how our kids did on swings because her 9 year old couldn't quite do it. Since Blondie is also 9, this is for her. Blondie has been doing this for awhile, but I think it basically comes down to practice, practice, practice. She is also a left side weakness, so she says she uses her right leg to really get going, but she tries to move them both sort of at the same time.

I hope this helps your daughter.

Pot holders

Blondie has watched her little sister make pot holders with the little square loom that comes in a kit from the craft store. She used to have trouble with the loops made from jersey type material, so she never really did a whole lot with it. When you have to fight to get them to even stretch across it isn't much fun.

Cheesie was the main loom user, but it cracked. Over the weekend Brian bought her a new one that came with nylon loops and Blondie immediately tried it out too. Since she was successful her Dad brought her a loom of her own. She is so excited to hand make some gifts for Christmas (etc) that she started a list of who needs one. In the mean time it is a great way to work those little hand muscles on her right hand even more and make them stronger!

Friendship bracelets

Blondie ususally gets bored when it comes to craft activities. They take her longer than her little sister (who gloats about being fast), and her attention wanders. She generally makes it through half of any project and then it just sits there and Cheesie will ask to finish it.

This past week in Brownies we started making friendship bracelets to teach the girls the square knot for the Art to Wear badge. I started with regular white string because its nice and thick, but when we switched to embroidery floss it was too small for some of them to enjoy. Blondie was shown the directions just like the other girls, and then I walked away from her to help someone else and didn't stop to think about how she would possibly make this knot. Next time I looked up she was pulling up her second or third knot with both (yay) hands and having fun. It took her the whole meeting, but she finished it.

We showed miss Tonya (and shot the video) when she came for OT yesterday. Blondie is working on a chart to try to earn 50 checks for using her left arm during the school day, so we're incorporating the bracelets into the check system too. When Blondie gets 50 checks they are going out to eat (or something). After therapy Blondie and Cheesie wanted me to take them to the craft store to find some thicker string to make colorful bracelets. We found some cording and decided to try that, and it has worked beautifully. Blondie finished a pink and purple one while she watched tv last night and then started a pink and green one this morning. She is working much faster than the video now, and is so happy to find a craft to make for other people. So check your christmas presents, you might end up with something handmade from Blondie.

IEP meeting today or Once again I'm in denial

Blondie has qualified for resource help for basic reading fluency. We knew this was coming, but here is what I've learned about myself. I CAN'T accept that my daughter has a learning disability. Intellectually I can analyze it, and I can remediate it, and I can understand the numbers behind it, but I cannot emotionally accept it. I'm keeping it real.

In the meeting today everyone was very nice and supportive, but as a teacher, I was questioning everything, and I'm sure it wasn't just "as a teacher." I'm pretty sure "panicked mom" made an appearance too. Not sure what kind of impression I left, but my reflecting led to this idea that after 5.5 years I cannot accept that she isn't like the general child. You'd think I know that right? The resource teacher is lovely, and I think she is right on track with Blondie, but I found myself asking things like, "Why did you choose such a low list of words to start with?" and "That goal isn't hard enough how did you come up with that benchmark?" KNOWING that if a child meets a benchmark the bar is just raised. Maybe its that I don't want her to have any possibility in her future limited, except that it already sort of is - she can't join the military, she can't be a neurosurgeon (doesn't have two hands with fingers that work). Really this train of thought is seriously flawed because not all of us can do those jobs either because of interest, or whatever. I think a big part is when a child who is really awesome in so many areas is reduced to numbers on a sheet its soooooo...... cold..... or something. It is an in-your-face analysis of deficits when I try to work in the positives when it comes to her.

Here's what I found myself thinking: HOW is she going to get to the "normal" (I'm shooting for 50th percentile minimum across the board, and then I'll raise that bar too) if we are teaching her on a 2nd grade level when she is a 3rd grader. Now if I were facing me across the table from the classroom teacher side I might be concerned that the parent didn't understand that a learning disability isn't something that can be fixed in a few sessions. As a teacher I try to teach strategies to kids to help them learn what they need differently. I know that is what is going to happen, but I couldn't keep the concern from coming in. I was trying to figure out how to make things harder for her. For instance, instead of allowing every math/science/social studies test to be read orally (which is no problem if I'm asked to do it as a teacher), I was actually asking for her to do it herself first and then see if she needed to have it read to her. Will this work, I don't know.

I DID FIND OUT about the previous post's assignment. Blondie's teacher had noticed that paper, and questioned Blondie about it differently than I did. She explained the directions to her again, and asked what she did. Blondie explained that she thought she had to alphabetize each letter in each word - just what Roxanne's husband thought (WOOHOO Craig, you're awesome). So, teacher wasn't too worried, it was just how Blondie processed directions, but I still wish I had known that as I could have cut down a lot of research on dyslexic type issues.

So we're jumping into the resource pool, and even though intellectually I know its best, emotionally I'm sad. It's almost like I gave in.... but then I rationalize that its like OT and PT and just another way to exercise her brain. Thankfully her teacher had no problem in sending home every single assignment that was missed in class - so I can at least feel better that she is keeping up and not missing anything important. Give me a few more days/weeks/months and I'll probably be fine. Knowing me I'll compartmentalize it into a box, and apply it only to reading. I'm still going to work on gathering strategies/kinesthetic activities/independent work that do work for her and start really trying to get that information out. I'm really thinking that just an alternative type of teaching will help, maybe I just don't like canned resource curriculum or something.... I"m going to have to reflect some more.

Sorry for the rambling post, very stream of conscious, but its my way of processing. Check out the family blog to see how Blondie scoops ice cream with one hand. She was one problem-solving genius on that task! http://www.dawsondiaries.blogspot.com/

ABC order

Some things with Blondie just don't make sense. We've come across a new phenomenon with her lately. I'm not sure if its something new with her brain, or the fact that she is growing, or something with her eyes. I know she takes information in and flips it around a few times before it "lands" in the correct place, but I've only seen this kind of reversing issue when we've had her physically build something, never with her writing.

Example 1

She is supposed to copy the word from the list and place each word in alphabetical order. Last year we would do this on index cards so she could physically manipulate them, but apparently that isn't what this year's teacher is doing. So this paper looks like she can do it just fine......

Example 2

In the same pile of papers coming home is this other example. This paper clearly shows some issue. All of the correct letters are there but obviously out of order. I don't know if this example of her processing worries me the most, or if its the fact that this was sent home without anyone working on it with her.

When I asked her about it she said, "Oh, I did that one wrong."

Me: "Oh, okay, what's wrong with it?"

Blondie: "I didn't put them in alphabetical order."

Me: "mmmhmmmm.. (I hadn't noticed that because I was freaking out about the spelling thing) so, how can we fix it?"

Blondie: "Well, I have to look at the first letter and think about my ABC's."

Me: "Okay. Tell me what the first word is...?" She looks at it says, "after" and walks away.

So she can tell me what it is, but doesn't recognize the letter issue. I'm going to have to research this and come up with a plan for home. Meanwhile, we meet on Thursday because she has finally qualified for resource help in reading. I'm sure I'll post more on that later.

Our Saebo

I've debated posting this because I don't want to be disappointed with the results, but decided to let everyone know our thoughts so far about the Saebo.
We had heard about another hemi kid using it, and were hopeful that it might help her left hand. Blondie's grandparents (HUGE thanks John and Dianne) helped us get it because insurance wouldn't pay for it, so we plan on pushing it as long as we can to make it worthwhile. It was designed for stroke patients so we are unsure how the results will be for our daughter.

Our OT and PT attended the class for this about two years ago, with Blondie in mind. They started her on several exercises to bend her elbow. When we attended the class a few months ago (see another post) we were relieved that she was a candidate because she could reach her left hand to her mouth. We watched another woman have to get something else because she couldn't do this movement.



We've been doing this for almost a month, and it is a lot of work. Our OT does have it modified with a couple of velcro straps (tan in the video) and foam in the fingercaps because Blondie's hand is still not growing well because the muscles in that arm don't work well. During the summer months we did the Saebo twice a day, with our goal to just be to open and close her hand 100 times each session. She can actually do about 70 and then she starts to ache and sort of cheat by stretching her arm out. We do sets of ten with me counting down, and then take a break for a minute or two.

We have noticed that she is getting a lot stronger. The other day Blondie was complaining about her arm hurting. I thought maybe she had fallen, but she said no. We finally decided that it was her muscles tired from exercising. This was exciting because we are also noticing that she feels a lot more sensation in that arm. In the past if you asked if she felt something she would either say no, or point to a totally unrelated place on her arm. Now she can point to the area of the pain, or object touching her. There is some carry over afterwards too, she can usually MINIMALLY open and close her fingers without doing the stretching and bending thing she used to do to make her hand open and close.

Once school started we had to cut back to once a day during the week, with twice a day on the weekends. I'm not sure how this will affect the progress, but figure something is better than nothing. There are a TON of straps, and springs, and velcro, but I learned to put it on pretty quickly, and have had to learn to adjust things on occasion. The tension beads still worry me because I feel like I'm sort of guessing sometimes, but with OT twice a week checking things I feel better about what I'm doing. I also DO NOT have her do this during OT and PT at all during the week, it is only something we do at home. Honestly, I didn't want other things ignored because we have this new brace, I thought that it was Brian and my responsibility to help her with this. OT does help a lot by guiding what we do, but PT doesn't see this at all (even though she has had the training). We decided to just start with opening and closing the hand to build strength (T-Rex's friend said its like doing pushups with just your hand). Once she is stronger we'll start the ball exercises, and I think we'll have better results.

We are hopeful with this new tool, but realistic that we are not the audience intended for this device. My ultimate goal is for her to have the strength to hold things securely in her hand, and to have her whole arm start growing again so there isn't as much of a discrepancy in length. We'll keep trying, feel free to ask us questions - we're just kind of going with the flow on this one.

Mom, HOW do you DO that?

Usually if your child looks at you admiringly and asks how you do something you just feel like the best mom in the world. Not so much after this conversation...

I was sitting with Blondie and Cheesie on the couch reading one of their American Girl books out loud. I know T-Rex enjoyed these books when she was in 3rd grade, so in an effort to expose Blondie to experiences other girls her age might have, I'm reading them aloud (scroll down to see past posts about reading).
I'm reading right along, and we're learning how Molly is going to put together a tea party, when Blondie stops me and says, "How do you do that?"

Me: Do what?

Blondie: Keep track of who's talking and make their voice.

Me: Well, I read a lot and when I read I make it into a movie in my head, and when I read I can also remember what is going on in the movie.

Blondie: I can't.

Me: Can't what?

Blondie: I can't remember my movie and read, or read and remember my movie.

Me: We'll just have to practice.


And then I went back to reading aloud because honestly, Cheesie was sitting on the other side of me and her precocious little self was about to jump into the conversation with how she could do what I do, and we don't need to be reminded that our little sister can easily do things we can't.


So then I took Blondie to the bookstore and we bought Henry and Beezus (which cannot be read alone by her, but I don't care because she was interested)and we will find a place without Cheesie to practice reading that probably while we hang out at the lake.


The American Girl books aren't particularly difficult to read, but there is a lot of history in them that the little girls don't have any connection too, so we're using them as a way to start talking about those things. We've learned about bottle caps (and point out coke bottles every time we go to the store), and that people kept gardens like we do, and girls wore dresses pretty much everywhere, and that families had people in a war far away (like the soldiers we handed cookies to), and that kids were sent away from the war to stay safe, and that girls went to camp that looked a lot like Camp Congaree, etc. Then the little girls run go get the millions of dollars were of stuff that resides in our house from the American Girl store, and play tea party, or camping, or bomb shelter (it's in the book).


I like to read books a little above the girls, and while this one isn't tough, I want to pre-expose Blondie to things that other kids just have to hear once. I want it percolating in her head long before she needs it so she isn't playing catch up, and since I know that if I read it to her, or she experiences it she learns it MUCH faster than if I send her off to stumble over words in a text book - so I read aloud a LOT. She also reads books to me, but my goal there is purely word attack and fluency - I'm not even really working on comprehension.


So if you have a hemi kid in the early grades (or any kid having a tough time reading), I would suggest (as a mom, and as a teacher) that you check out your state's learning standards and find out what is going to be covered in science and social studies this year, and start gently offering your child a knowlege base from which to start. It seems to be working with our daughter, but it still hurts that she is starting to understand that she can't do something easily.

Waiting for the Saebo

For those of you who don't keep up with me on facebook, or on the yahoo group, Blondie is fine. What I thought looked like seizures was actually called clonus - muscle temors. I am so thankful I can't even begin to tell you. We were fortunate..... other families however are not so obviously lucky. My prayers right now are with the Hall familyat http://jessiekelley.blogspot.com/ . Their daughter is a few years from her hemi surgery but has been having facial tics with stomach aches and they are concerned about seizures. If you could add Jessie to your prayer list I know they would be grateful.

A few posts back I shared that we had gone to a Saebo class to see if it was even viable for Blondie to try. It was, so we started the process to purchase one. This is pricey, and of course, not covered by insurance. With the help of grandparents we are now waiting for our very own to come in. Our hope was that it would be here when I was off during the summer, but it isn't looking likely. In the meantime, Blondie's OT made this little brace - used only during OT.... to work on strenthening her thumb. She is able to hold onto the little ball, but always needs her thumb adjusted, so we're moving in that direction and working on her thumb.

I'm wanted to post a video of her exercise, but it isn't great, I'll try again Monday morning. Blondie talks through the whole thing and doesn't seem to be paying much attention. This happens a lot - they will have success with an exercise, show me, I'll run for the camera, and then her muscles fatigue.

What I love about the therapists around Blondie, and I'm sure this is true everywhere, they have a knack for knowing where we want to go, and how to move her there. If we can't have the Saebo right away they will engineer something to help strengthen her hand. We've really been moving toward this for about a year or so. The therapists took the class, and then started building similar equipment to practice on to see if we could get her to this point. I want the muscles in the arm to get stronger to minimize the difference in length between her arms - muscle growth helps bone growth. Everything we do in OT is moving toward that goal.

@*%@!

This morning I was helping Blondie put her shoe on over her leg braces, when I thought I saw her left leg (we call it the "affected leg" in hemi lingo) shake. I barely saw it when it ended. After I put the shoe on she said, "here it goes again." Sure enough, it was shaking - the whole leg -it lasted about 20 - 30 seconds. Folks, my heart SANK. Was this a seizure? Were we joining the ranks of those debating a redo.... so many negative images ran through my head. Let's face it - as far as crummy diseases go, we have been absolutely blessed. Blondie has been the poster child for everything going right (for the most part).

I sent her to school, and talked to the office on the phone to give them a heads up, and tried to go through the day. Why in the world did I send her to school? Well.... if the leg shake is a seizure again it is something to LIVE with, not HIDE IN THE HOUSE with. Kids have seizures - she wasn't falling on the floor, her leg was shaking.... so go to school. Of course I also posted to the yahoo group for someone who may go through this periodically, and got a lot of reassurances that it could just be clonus.

Around 11 I got a call from school saying she had told them several times that it happened again. Now, I had already called the pediatrician and had an appt. for 3:00, but I called back and moved it up. I had also called two different neuro offices, but her current neuro office left me on hold for 30 minutes, and the former one hadn't seen her in 5 years, and getting past the chick at the desk was impossible. Thankfully our pediatrician called the local neuro, got us in, of course he would see us when he knew who was calling (kept trying to tell the chick on the phone that, but she was having no part of it), and so Wednesday we'll go in for an EEG. At some point next week we'll have an MRI. The words thrown around today were "Focal Motor Seizure" meaning one limb involved, and "Jacksonian Seizure" meaning it is possible to have a seizure and stay totally aware (as Blondie was this morning) which is really something I didn't want to know, as that was my secret weapon in deciding if something was a seizure or a weird twitch. It was also pointed out that since we've never seen clonus in 5.5 years then it might not be clonus. Crud.

So still firmly on this roller coaster ride, only now it stinks again. 5.5 years out Rasmussen's still smacks you in the face and reminds you that it thoroughly sucks! I'll let you know what we find out.

**Sorry for no pics - not feeling it tonight.**

Saebo

Two years ago, Blondie's OT and PT went to a training session for Saebo (http://www.saebo.com/). They thought it had a lot of potential for her, but she was big enough at that time, so they used the last two years to develop other muscle groups to support her shoulder and upper arm better, and we actually started to see the thumb move, and some finger movement.

This past week her PT asked if we were interested in being a volunteer for the class so other therapists could learn to use it with patients. I was interested, but OT wasn't sure she was big enough yet, so after some back and forth, we ended up there today. Thankfully both OT and PT went to make sure it was done well so as not to hurt any progress, and I was thankful they gave up their Saturday to be with us.

The first thing the group of OT's did was to fit one to her, and modify it to fit her hand. They used the Saebo reach, and the pediatric digi caps - which were still big, so they lined them with a pad to take some space. After everything was adjusted and she started working, the camera died (wouldn't you know) but thankfully Kathy (PT) was taking video, and my SAINT of an "aunt" brought me batteries AND another camera (then she posted 7 videos to youtube for me).

They gave Blondie a break, and then the second round started. Her hand was a little tired, but I caught some good video. She was able to hold the balls, but only after we switched to foam balls, or slightly smaller ones.

I was pleased overall, but still have many questions. Does the movement stay with her as she grows, or do we eventually lose it? How am I supposed to manage two 45 minute sessions a day with a kid who will get tired of it? There was a lot of refitting done the second time she put it on, how am I supposed to do it, and how will I know if its wrong? There are some real possibilities in the use of this device, but it really is for specific kind of people. It was developed for stroke patients, and it has really taken 5 years of therapy for Blondie to be prepared for it, so not just every hemi kid can use it, so I can't recommend it as the coolest thing to use. I think we'll move forward with it and be a guinea pig for awhile. The next step is to order her own, and see how much insurance will cover (not much, I've been told), but I'm leaning toward making it happen anyway. Brian was very impressed with today's video, and Blondie was very excited about the possibilities, I just hope the enthusiasm lasts.

Then other days, the sun is blinding

I promised that I would be back in the land of positive outlook within a day ---- it actually took two. Today, Blondie brought home the final report of MAP scores.




Here's the low- down: MAP is based on percentiles, not percentages. This essentially means that it shows a ranking out of 100 people performing at the same level on the test. The test is one in which as a person answers a question correctly it bumps them up to more difficult levels, and if incorrect lowers the level. If you read the yellow worksheet on the left it shows that she started the year at 1 percentile in reading - meaning that 99 were better, and then ended the year at 7th percentile (now 93 are better). Yes, I'm still hurting, wishing I knew how to help her brain wire the reading skills. The right hand side HOWEVER, shows she started the year at 14th percentile in math (86 better) and ended the year at 97th percentile (3 better).


I was of course elated, but again shocked. I expected her to perform around the 50th percentile, as that is average, and since she is usually on grade level and not above 50th makes sense. So, I'm thrilled, but the analytical teacher in me is left pondering how this works for her.



Yes, her teacher is truly one of the best I've ever seen - she immediately "got it" when it came to our attitude about dealing with keeping things normal, and not helping. She understood MUCH quicker than others that we want a fiercely independent kid in as many areas as possible. One of my colleagues mentioned that her husband saw Blondie in the cafeteria the other day trying to balance her tray at lunch w ith one hand, and still some how scoop out what she wanted. He wanted so badly to jump in, but knew through the grapevine that she had to work it out. He was impressed with her figuring out how to do it with one hand, and when relating it to his wife she reminded him that this was my kid, so she didn't have a choice.

BUT, is it truly a left brain (logical mathematical)/right brain (creativity, reading) "thing" at work, I'm doubting it. With that logic she wouldn't be singing constantly, or painting everything (hemi friends know the table story). I really think she just has stronger connections in her brain, for whatever reason, at this period in time. I don't know that this will hold forever, but who knows - I was hoping for 50th percentile and look what she did.

Repercussions: Well, I need a plan for summer. I'm going to start in on multiplication early because she is already talking about it constantly (must be starting it in math, but I know 3rd grade is the real starting point). As for reading, we're going to do it constantly, and I think I'm going to make it science based because that is her interest, and use a lot of drawing, and art to help her express herself visually to use as a reminder what she wants to write and communicate. Then we'll read some more, and continue to work on a few contextual strategies to help her gain meaning. Any other ideas?



This is one big roller coaster ride.

It isn't always sunny

Some days, being Blondie's mom is like being steam rolled. Definitely not her fault, don't get me wrong, but I automatically move into protection mode and it isn't always pretty.

Today, two different Blondie related things happened. First was MAP testing. This is essentially a standardized test on the computer. Last fall I was crushed. I sat in a meeting to decide if she should be tested for resource and I saw that her MAP score was in the 1 percentile for reading. Folks, this isn't easy to share - it really isn't. I was deeply shocked.... Here I am a teacher, and I have a kid that I think is relatively on track - just got A's and B's with her report card, so how was this possible? Then I looked at the big picture - she was doing grade level work, although distracted/impulsive"ish"/lacking long time focus and scoring well in class despite it. So today's reading test score put her in the whopping 7th percentile. 7th. That means that out of 100 kids 93 are stronger in reading. So I'm trying to wrap my mind around this.

Yes, she can read, and is getting better. Yes, she can do regular second grade work without resource help. So, at the moment I'm just going to think that her testing skills aren't up to speed, and compartmentalize that way - because any other way is too painful to think about tonight.

After this "news" and now in a "don't mess with my kid" mood, we went to PT. Understand that we (OT, PT, and us) have wanted to try Blondie in a Saeboflex for a long time. Blondie wants it badly - she told me tonight that she wants it so her hand can work again - ouch - that isn't necessarily her reality---- ever. PT is going to the Saebo class again, and had asked if Blondie could be a volunteer. It will be tough, she'll have to miss some time with her grandparents from TX this weekend, but I thought it was a good opportunity to see if it would work. Then PT called OT, and OT later called me....not really happy. She has concerns that Blondie's hand still hasn't grown to meet the measurement requirements, that her fingers still hyperflex a lot, and while she can open her hand and let go of things she is concerned that the spring action of the Saebo, may exaserbate the hyperextension she has. She further thinks that we shouldn't use her in a class, but that if we want to be evaluated go on up to Charlotte. Um.... good point.... didn't think about those things....okay, we'll pass. So now I have two viewpoints and I'm leaning toward the OT (better safe than sorry), but understanding the PT (opportunity to try) and weighing the options.

Left hand holding bubble wand and moving around (gross motor skills).

Sometimes being the mom of a hemi kid is like blowing bubbles. You blow to make something beautiful happen, but it stretches a tad to far and POP! Today, we popped, and I have to restart my "beautiful" outlook again. Don't worry, it will be firmly in place tomorrow. Five years out, and there are still things that hit you in the face.

Tie a show with one hand - faster

One of the ways people find our blog is the "Can you tie a shoe with one hand" search, and it sends them to my family site where I have some old therapy things. About two weeks ago I shot video of Blondie tying her shoe (better than the photos I published over at the other blog) and THEN HER NEW TRICK.... a double knot.

So here is the tying shoe part. Please notice how short a time it takes her to do it now - some days one shoe is way under a minutes - slower than a two handed kid, but faster than me with one hand.



Here is the double knot. It isn't the greatest video, and I don't know what she does with her fingers, but she can do it. This is new, so it is definitely something that takes some time on her part. Soon she'll do it faster, but now its still something she has to think about - BUT I don't have to do it for her now.



Enjoy. Next post soon - I have more pics of ideas for playgrounds.

Sit Ups

Blondie is getting better and better at these. She used to find them utterly impossible. Our goal is to strengthen her trunk to help strengthen and even out the left side.



It has taken awhile, but she keeps on working it.

Reading

*****Read text first, then go back and watch videos - I don't like lots of text without pictures so I slid them in*****

I had another hemi parent ask me about the special issues we face with reading, and I couldn't think of anything. I literally drew a blank. I know as a teacher that girls tend to be more right brained than boys, but my daughter doesn't have a right brain, and I know that learning creates neural connections, and that because my kid doesn't have both sides that sometimes it takes longer for connections to be made. SO, we read a lot because our house has books piled everywhere, and all but Big Al spend hours doing it (Big Al is a great reader, but she is an extrovert who doesn't want to do anything by herself and shuns solitude).





When Blondie entered kindergarten I felt blindsided by the difference between her and other students.... sort of. I was used to dealing with her body differences, but wasn't sure where she would fit in a classroom. I knew she wasn't going to be as quick as her sisters in learning new things, but I didn't know that almost average would be just so hard. Here we have this tiny little girl that terrifies teachers as soon as I go into detail about her learning difference (because at first they just see the arm and leg). At first I fight (almost every year now) for her to be allowed to run and play tag, and climb things, and fall down like other kids and for the love of GOD please let her do everything on her own - in fact MAKE HER (I'm finding that I'm a bit different than other hemi parents in my philosophy - I run from extra help, where others embrace it -- maybe I'm still in denial). Once we get past that lesson it inevitably turns to the idea that she learns differently -um... duh.....she has half a brain. Some things (she cares about) zip right along. For instance, she has very little issue with math (as long as she isn't bored and is paying attention), but reading is a whole different ball game.

In kindergarten is was all she could do to identify letters and remember their sounds, but we did it. In first grade those darn blends about did her in. She cried everytime she read, and it was an exercise in patience when listening to her struggle over words. She simply sounded things out, stories weren't understood by her unless we read them out loud. One day she would be tested, and fail miserably, and the next month she would test right at grade level. I had no idea what to do, so we kept reading. This year we switched her school, and I think that took some pressure off of her. This school is for kids who don't fit the norm. Blondie tests at exactly grade level (which honestly means slightly behind), so she does not qualify for resource (although I keep waiting for someone to tell me its time to test - but I'm not beating down the door - we do a lot at home). This school has an academic assisstant for every classroom, and teachers are given WAY MORE training than I am (as a typical public school teacher) in learning differences.




This year we have seen less crying over reading (or hiding her books in the garage as she walked into the house - YES she did that) and more connections with her reading. BUT we also give her as many experiences as we can (just like with all our girls) so she can have a foundation to make connections to her reading. We read with a card or ruler covering up a bunch of the text below so her eyes don't wander when she starts looking for help from pictures. We make her read everyday. This year her teacher suggested she try reading WITH books on tape to increase her fluency (speed) in reading. Blondie is testing just one level behind (typical for us - a little bit behind, but not enough for resource help).




In the first video, you see Blondie reading by herself - she has already listened to the story so she knows what is coming, and she enjoys this book (Diary of a Fly). The second video shows Blondie trying to read as fast as the CD, but with absolutely no luck.... so we'll keep trying - maybe with easier reading books. The third video is Blondie reading a book she hasn't seen before (notice the card and the weight bearing on the left elbow). I ask her questions at the end, and she gets a bunch of it, but MISSES the two foot tongue - she says that the giraffe has a tongue that comes from its foot, or goes from its mouth to its foot, etc. THOSE are the examples we try to combat because they are all too frequent. So we keep reading, all types of picture books, and chapter books (she reads short pages, I read long) like Magic Treehouse (I stay away from Junie B unless I'm reading because the language is butchered to sound like a child), or Charlotte's Web. The more powerful words I can help her hear (like regurgitated - which she now knows means "thown up" and she thinks flies are MOST disgusting), the more she will use them in her speech, and eventually connect them in her reading.... at least that's my theory. I liked this article about how the brain learns to read, but I'm partial to brain research, having a hemi kid, and being a teacher. Check it out, I'd love to hear other opinions.

One handed things

I came across this website http://www.compartmentseventy6.co.uk/1-up/1UP.htm while Big Al was looking for info about how to do things one handed. Apparently she has to write a paper for English and that was her topic. I know a young woman who can do it with regular ponytail holders, but Big Al hasn't figured it out yet. If she does, or I can talk the young woman into it, I'll post a video. In the meantime I thought this was a neat idea, and I emailed the lady who made them to find out what the cost would be to ship to the U.S.

Another thing I found was a cool website that I hope may help Blondie out in the future. She really wants to play an instrument, and we thought we would be limited to a trumpet, but Dr. David Nabb, a professor at University of Nebraska, Kearney has found a way to adapt woodwinds for one handed players. You can check out that website at http://www.onehandwinds.unk.edu .

Two new braces

So, I'm going to try to explain why Blondie is using these two braces.....

The wrist guard is like one kids would wear while roller blading, or skateboarding. Her PT wants her to wear it on the playground or between classes in case of falls. That's the idea anyway. I think Blondie will probably wear it once and then too many people will ask questions and she'll hide it away in her backpack. I also think its going to be very hot. There is one her OT has ordered for sleeping in to maintain a proper position for her wrist because THE THUMB IS REALLY MOVING! Blondie is really getting movement back in that thumb, and the wrist can almost turn all the way over.

The leg brace is because she is losing range of motion in her foot - she can't move it like she used too, and somehow this may help. She only wears this to bed. I don't know the technical "how it works" stuff because honestly, I've taken a step back from therapy. I'm thinking that it maintains the traditional position of the foot, and may help stretch the hamstring while in the flex position, but I'm only guessing. Brian is currently taking her so I can get a break - I've been doing it with Blondie fairly exclusively for almost 5 years. I'm tired - I'm sure she is too, but she is still cheerful about going.

Making Christmas Ornaments

As I was starting to make Thanksgiving preparations this morning, Blondie and Cheesie were sitting at the table working on a craft kit for making wreath ornaments. Cheesie ripped through her half, but Blondie was getting frustrated. I started holding the pipe cleaner she was using to string beads, and Brian started looking for her grip thingie (I don't have a better word for it).

She used to use this when she was little to hold paper when she was cutting, but this year she hasn't needed it as her left hand holds paper down sufficiently and she really didn't want to use it at school this year. We initially bought 3 of these and we kept one at home, one in her classroom, and one in her art classroom. We bought them here: www.allegromedical.com/daily-living-aids-c519/easi-grip-free-hand-paper-holder-p500980.html We did however buy several different clamp to hold it to the table because the one that came with it was insufficient. We have a traditional little orange clamp (looks like a C with a twisty thing that screws down the clamp), and the blue one you see in the picture which is our favorite (made by IRWIN). Blondie can use this one quickly to release and adjust, but it doesn't do fatter tables like the traditional one does

Today we used it to hold the pipecleaner, and then her left arm had to be used to stabilize the other end while she put the bead on and slid it down. One thing our kids are weak with is the fine motor skills in BOTH hands. Blondie didn't play with 2 hands once she got sick at 2.75 years old, so the fine muscles in her right hand are also weaker and it shows in her handwriting. Anything we can do to have her working it is great.


I hope everyone has a great Thanksgiving, and may your family and friends all be healthy and safe.

Lefty playing games,

A few nights ago, Blondie was playing the computer, and called us to come see her use her left arm to play. Please disregard the junk on the table....




Here is a shot of the nasty eye bruise.... thankfully its getting better.

Black Eye

I came from my conference on Friday, and about 40 miles out I got a phone call from Brian. Blondie had been pushed down on the playground on Thursday and had a really bad black eye.... but he was on his way to the pediatrician's office because her eyelid was actually bruised... and the white of her eye was now bright red. This morning, Sunday, we woke up to the red having spread.... it's gross.... it is now out to the bright blue of her iris. We'll be calling the ped, and the opthamologist tomorrow if it continues to spread. Has anyone else "bruised" their eyeball? Ick. I can't bring myself to post the picture. Maybe tomorrow if a bunch of the face bruising is gone. Sigh.... does this ever end? Do we keep her from playing on the playground? I don't think so, but between the possibility of a broken arm, and now a bruised eyeball, I'm going to have to come up with something.