Lilli

Lilli
Showing posts with label therapists. Show all posts
Showing posts with label therapists. Show all posts

Friday, November 1, 2013

How Lilli Jumped from 15 Months Old to Second Grade... with One Test.

Over the last few months, I have neglected to tell you that Lilli got a new communication device. I think I may have started to write a post about it once. But this summer was all about painting and fixing our new home and moving into it. The whole amazing experience of Lilli's newest communication device and how she used the ipad to take a standardized test kind of got lost in all of that craziness. She now uses both the ipad, and a new device called the NovaChat. The NovaChat is what she is now learning to use to communicate independently - and that will have to be a different post. For now, I will focus on the standardized testing.

It all started when we were talking about moving. Jasen was getting ready to graduate from chiropractic school in March of 2013, and we were once again at the crossroads of where to go. We thought we were going to move away. I guess it was fall of 2012 when I began to make plans for Lilli in preparation for this. I told the school district that I wanted documentation in her permanent record about what she is able to do. (I am a "think far ahead into the future" kind of mom.)

This was important to me, because just one year ago, her school assessments still said she was at a "fifteen month cognitive level."

Fifteen months.

Please let that sink in a moment, if you have read some of my other posts about Lilli, especially way back when she started to type on the ipad.

There was no way that I was going to let her school record say that, after she has been working on second and third grade level material for over a year. It is in her mind. You just can't see it.

Not because I care what other people think, but because I care about her education - we had to find a way to "prove" that she is smarter than a baby.

If we moved to another school district, I did NOT want to have Lilli start back at square one. I did not want to have a new school district look at her assessments in her file and doubt what she could do, thinking that her wacko mother was completely disillusioned in believing this child could actually do some third grade level work.

I did NOT want her go go into a special education self-contained class where she would be re-taught the alphabet and letter sounds that she probably learned when she was four and five.

I began to ask about asessments.

It is extremely difficult to assess a non verbal child with autism and fine motor issues that hinder her from writing. We know how to assess her, but there did not seem to be a standardized test that would do that. Schools want official standardized testing results, with tests that are administered a certain way. My goal was to prove on paper - officially -  that Lilli can and does understand, and deserves an appropriate education. And by "appropriate," I mean close to or on grade level, but with extreme accomodations. And by extreme, I mean a teacher who is willing to think completely out of the box and work one on one with her to discover what she can do, and think of imaginative ways to bring out that hidden intelligence.

I knew based on her special education path so far, that it would take a special person in a new school district that did not know Lilli, to see her potential and have that faith in her abilities. She might not be able to put blocks in a shape sorter, but she knows her multiplication facts. Darn it, there should be a way to prove that. This is the kind of stuff that makes me so mad and frustrated, especially as a former teacher. I hate that a standardized test is so important in proving to the world what a child knows.

At her IEP meeting in the spring of 2013, the adminstrators were supportive and helpful. We brainstormed. We realized that the only way to do this would be to figure out a way for her to take a standardized test.

So despite my hatred for standardized testing (because as a teacher, I gave many of those tests years ago - enough said) we began to rally for Lilli to take a standardized math test. "We" includes her parents, her homebound teacher, her ABA therapist, her speech therapist, and her occupational therapist. Lilli has a great team right now. We are blessed. It is incredibly important to me to have people that work with Lilli who truly believe in her intelligence and potential. I look back with sadness on years where we had various people who did not believe in Lilli's intelligence and potential. If even one person on this team had said, "Well, come on, Jennie. Face reality. She will never be able to take a standardized test, and that's OK..."

Nope. No more of that. I do not want people like that working with Lilli. I had a therapist two years ago sit me down and try to get me to "face reality," and work on what Lilli "really needed." (In her opinion, that did not include academics.) You want to know what I did about that? I told the school to remove Lilli from that woman's therapy services immediately, that I did NOT want her working with Lilli ever again, and I did not want her to attend any future IEP meetings or even have anything to do with Lilli. Not listening to you, negative professional with "twenty years of experience." 

A few weeks after the IEP/brainstorming meeting with the principal, assistant principal, and teacher, Lilli took a standardized math test. Her teacher and therapists only had a short time to prepare Lilli because of the testing window, but she had been "taking" multiple choice tests with cut up paper for many months. She took the math test on the computer, and used her ipad to make the choices. Un-touched. On her own. No "hand-over-hand" guidance. She took another standardized alternative test for English/language arts, math, and social studies, which used cards that were laid out on the floor for Lilli to choose her answers.

The nitty gritty of the experience would be a different post, with exactly how we did it. One day I hope to really write all of that down for other parents who need guidance in helping their children through a similar educational path. It was a lot of hard work on the part of the teacher and therapists. For now, I will post a few videos of the very beginning stages. In the beginning, it was all experiemental. We figured it out as a team, through trial and error. We used tape, old overheard projector sheets that I cut up, and Vis a Vis markers, along with the ipad. Then, she practiced.

The end result was that Lilli learned to take a multiple choice test with the letter choices on her ipad. When she took the standardized math test on the computer, we went to the school, the teacher pointed to each question and answer choices on the screen, and Lilli chose her answer on her ipad in front of her. Then the teacher recorded which answer Lilli chose.

Lilli took that standardized math test in the spring of 2013, when she was a third grader. She scored around the end of first grade, beginning of second grade for math. Then she took the test again this fall. She beat her previous score by around 20 points.

Chloe is in first grade right now, and just took the same test. Chloe scored very high on her math test, above grade level. I cannot compare these two extremely different children of mine. But for the sake of pointing out that Lilli is really smarter than most people give her credit for, I want to tell you this:

Lilli's score beat Chloe's score.

Lilli is nine and still has a ton of catching up to do. She missed a lot. She spent way too long learning the alphabet and number identification because no one could assess what she knew. Any person who would meet Lilli today would think that she is on a baby level, because of the way she walks, how she cannot talk, and plays with the only toys she can use with her fine-motor skills - toddler toys. But she really is smarter than a baby. I am not pushing for Lilli to "be" anything, to have a certain score...no. I just want an accurate assessment of what she does understand. And since there is no such assessment for Lilli, we had to figure that out.

I never thought I would be thankful for a standardized test. But I am. I am so proud of Lilli. We will keep working. And oh, incidentally, we never moved. We stayed in the same school district. Jasen found a job here close by, and we bought a house in the district. We chose to stay here for now, for Lilli's sake. We feel very blessed with the team of people she has right now, and we do not want to lose that. In the very near future, things will really change. Possibly as soon as this coming spring/summer.  Lilli's ABA therapy will run out and we will no longer have it. I cannot think about that right now, it makes me feel panicky. I am living for today. Trying to beat the clock. Trying to cram in as much catching up and learning as possible before things change.

The other "alternative" standardized test turned out to not be very helpful at all. Her results came back and she scored a "3 out of 4." The scores were completely general, non specific and unhelpful to me as a parent. No grade level, no skill level. Just said that she was "progressing." However she did get a lot of practice with multiple choice testing, and it was a positive experience. We are going to keep focusing on the test that all the other kids take. The school-wide standardized test.

Fo now, we will continue to build up that school record with test scores that do mean something.

And I may be the only former teacher and mother in the world to proclaim this:

I love standardized testing.

Because, it proves, on the world's terms, that Lilli is smart.


If you watch these video clips, it's not the questions and answers that are important. It's the method. This was the first day that we tried to show Lilli the concept of a multiple choice "test." It was all new to her. Also, you will notice that she looks away a lot. But that does not mean she is not listening. She is learning. Transferring the choice she wants to make from the top ipad to the bottom ipad is a new challenge. We used several different apps that had multiple choice formats. We used our ipad to make a multiple choice touchscreen board for her to select answers. The speech therapist brought her ipad and used it for the apps. We taped the clear "A B C D" choices onto her ipad screen next to each choice. The concept began to make sense to Lilli after we worked on this for awhile. She ultimately took the standardized math test without being touched. Yay for "thinking outside the box" with a team of people who care about our daughter!













Thursday, August 1, 2013

Dishes Go in the Sink

When you have several young children, your house constantly looks like either a mini tornado just came through, or wild animals live there. I have found that teaching several young children to clean up after themselves and do chores is extremely challenging.

I think about cleaning up a lot. This is mostly because Lilli and Josh have therapists coming over almost every single day. Today there are five people coming.  Two ABA therapists (the line therapist and the lead therapist) and the ABA therapy coordinator for Lilli, and a service coordinator and an occupational therapist for Josh. Yesterday we had the homebound teacher, the speech therapist, the ABA therapist, and a personal care coordinator. We dearly love all of these people who help our children so much. I love that they come to us and we do not have to spend hours each week in the car or in a waiting room. They step over toys, ignore the mess in my kitchen, and use the messy bathroom without saying a word. I know they are here to help my children, not judge my housekeeping.

But I cringe from time to time.

This is my most common thought every morning as I sip my coffee: Who is coming today. Shoot, I should clean the bathroom.

Then I calmly scan the living room and kitchen disaster areas, and try to decide if I care. Many days, I don't care. I let it go. We live here. I cook a lot. My kids play with toys. We all use the bathroom. This is reality.

But sometimes I can't just let it go. If you are not used to having people come to your house almost every day, try to imagine how it feels. I assume that some of you reading this probably spend time cleaning up your house when you have company coming. Ever have someone drop by unexpectedly and you are just mortified at the messy state of your bathroom? You can only hope that there is toilet paper in there, and that no one left any undergarments in the corner on the floor. Your guest is lucky if there's a hand towel to dry their hands with that's not all wet and bunched up on the counter. Let's not even discuss children remembering to flush. Yep, well, that happens here several times a week. We have two children potty training and learning to wash their hands all day. I would pretty much have to clean the bathroom multiple times every day, to act like no one lives here and it is always clean like that. 

Mostly it's not about what other people think of me and my house cleanliness. It's about me being able to stand living here.  I don't play with Legos, and I do not want to step on them. And we have wicked, pointy Legos that look like grass and fire - those really hurt.

It is very important to me to teach my children how to help clean up. I long for the day in the future when they will clean up everything  - even the bathroom! But the process is so slow, some days I can't stand it.

The Clean Up Song


Cleaning up starts small. At first you are patiently showing a toddler how to put a few blocks into a container. You clap and cheer wildly to show them how "great" and "fun" cleaning up can truly be. Then you teach them some silly "clean up" song, and force yourself to chant it in a chipper way while crawling around cleaning up almost all the toys yourself. Your toddler puts a total of two toys back, commenting and playing with each one for a few more minutes.

Somewhere during the sing-songy-"cleaning up is FUN!" phase, the urge to thrust all the toys into huge black garbage bags and throw them out in the garage might cross my mind.

Right now this is what "cleaning up" looks like at our house:

Josh chants the clean up song: "Mean up, mean up, eb-by bady mean up!" While continuing to play with the toys. 

Chloe makes a mad dash off to her room, roots through her dress up stash (meanwhile making yet another mess throwing the dress up clothes all over her floor) and puts on a Cinderella outfit and apron - the "before the ball" Cinderella outfit. Then she has to have her hair a certain way... the right shoes...Mommy please button the back of my dress...and she grabs a broom, because a broom is essential to play the part, even if we are picking up Legos. Dancing with the broomstick in a Cinderella type way begins, with lots of dress swirling and a touch of The Little Mermaid song "Ah ah ahhh..." or some other Disney princess song. And oh, cleaning up? Thought we were putting on a play. What was I supposed to do again Mommy?

This is really consistently true.

This is her idea of the "before the ball" Cinderella outfit. And I did not take this picture specifically for this post. I took it on a random day a few months ago. We must have been cleaning up something in the garage.

And then, there is Lilli. She stands in the middle of it all, and does not begin to move in any clean-up-kind-of-way.

She hears my frustrated cries of "Clean up these toys right now or I am going to suck them up with the vacuum cleaner! SQUINKIES AND ALL!" (anyone who knows what a "Squinky" is can surely relate.) She puts her hand on her neck and smiles. I really love that Lilli gets my sense of humor. She might ignore me in other ways, but whenever I crack a joke for her benefit, I am blessed with a smile, or a giggle from the next room. (The Squinkies belong to Chloe, so I guess Lilli thinks this is funny.)

Lilli is completely aware of the clean-up chaos swirling around her. But she does not run around and help me clean up the toys. We discuss this issue often, and I even went so far as to actually explain to Lilli that we are working on initiation and follow-through with her. As I've said before, I choose to give her the benefit of the doubt. Call me crazy, but if she is smart enough to do math problems and take social studies tests, she can learn the meaning of the word "initiate." And maybe it will get her thinking about what to do with her body when I ask her to clean up.

Lilli is still in the beginning stage of learning to put the Legos back in the bin, and we have to sit next to her and help her complete the job. She gets off task easily. She has trouble initiating and following through. We can't tell her what to do and then leave the room. We have to take her hand and help her put one Lego at a time in the container. That's not really helpful to me most of the time when the place is a wreck and I need everyone to pitch in and help in a big way, fast.

So I am so pleased and proud to brag that Lilli has learned to pick her dish up after a meal, and put it in the sink. Thanks to her patient, fabulous, persistent ABA therapist. She is also learning to throw away her napkin in the trash. Now, it's not perfect. But I don't care. She does hold the dish high over the sink and "drop" it in there with a loud crash. (Here is my plug for awesome Correll dishes that do not break very easily. And rubber mats to line the bottom of the sink) She got mixed up last week and tried to put her napkin in the sink and the plate in the trash. Usually she gets so eager to complete this chore, she picks the plate up halfway through the meal and tries to get up to go put it in the sink while there's still a lot of food on it. Recently, she has wandered into the kitchen and scooped up any dishes at all that are on the counter - including clean ones - and thrown them into the sink.  But the habit has been formed, and that's the important part. She's getting it.

   

I have realized that the emotion that welled up in me on the day of Chloe's kindergarten graduation, is the same emotion I have when Lilli learns to do something. What kind of crazy mom gets choked up when their kid puts a dish in the sink?

Me.

It happened to me the other day. I realized she did it without me even saying anything to her. She finished her breakfast, slid out of her chair, and took her plate to the sink and dropped it in there with a loud crash. I ran around the corner expecting to see a mess, and realized she had just simply put her dish in the sink on her own. I was so proud!

It's such a huge accomplishment for Lilli, It's hard to explain. Every time she learns to do something after months of practicing with a therapist, it's like a mini graduation. She did it. She learned it. She did it on her own without me telling her. I know I never got teary when Chloe put her dish in the sink for the first time. In fact, I don't even remember it. And I probably was just relieved that Chloe finally listened to me and just did it, but certainly I was not choked up.

With Lilli, it is different.

I never got to see Lilli walk across a stage and "graduate" from kindergarten, and that does make me sad. Why didn't we? I don't remember. School has not always been a good experience for her. But Lilli has many memorable "graduation" moments that we usually take for granted with typically developing children.

Maybe we make too big of a deal around here for little things. But the little things are huge when you have small children. Life is all about the little things with a child. When Josh uses the potty and I clap and say, "Yay!" in a normal voice, he will correct me and say, "No, YAAAYYY!!" like, come on mom, you're supposed to YELL and cheer!

This is what we are supposed to do, moms: yell and cheer for the little things our kids learn to do on their own. And cleaning up is an every hour, ongoing battle in every house with young children. If anyone is going to help me clean up in any way at all, I'm ecstatic.

I will continue to fight the Lego, Squinkie battle and sing the stupid clean up song for as long as it takes. But I can celebrate the fact that one of my children has learned to put her dishes in the sink without being asked. And that's quite an accomplishment.

Now please excuse me while I go tidy up the bathroom.