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.