Testing without Touching

Let's be honest. The issue of typing while holding Lilli's hand or arm has some skeptics wondering if we are making Lilli type the words we want her to say. And now, Lilli is so used to where the letters are when typing, that sometimes she even partly looks away as she is typing a familiar word. She uses peripheral vision often, and always has. I think that is an autism thing. It's kind of wrapped up in the direct eye contact is difficult-issue. So when we are holding her hand and she is typing while looking sideways, I can understand why people might think that she is not doing the actual typing. It can also look like some kind of "typing torture." Especially out in public, when I am trying to get her to tell me something and she is turning her head, pulling her hand away, and whining or crying. I do not feel like I need to prove anything, because we all know she is doing it. But for the sake of other children who could start out this way, I want to chronicle Lilli's progression in typing on the ipad. You have to start at the bottom of the mountain before you get to the top. We are climbing somewhere in the middle right now.

I cannot wait until the day Lilli types all by herself, without us holding her arm. And she will. Goodness, she's only been typing for a few months! We don't need to rush things. Lilli is able to type individual letters completely by herself, although it is slow. She prefers to have someone stabilizing her arm. This week for the first time, she typed to Morgan that she wants to learn how to type by herself. That has been the ultimate goal all along, but having Lilli want to achieve that goal herself is key to getting there.

For now, Lilli types much better when we are alone and it is quiet. No pressure. No one saying, "Wow, I want to see her type!" It is so cool, and I don't blame anyone one bit for wanting to see it in person. Everyone is curious and wants to see her do it. But right now, she will only type with people she is close to, who spend a lot of time with her and believe in her. It generally goes well when there are few distractions, and it helps if we have a motivating reason for her to type. She does not do well with an audience, and kind of crumbles out in public when overwhelmed by noise and people. She also acts weird when I try to video tape her. Like any kid, she sees the camera and instantly freezes or does something wrong on purpose. Last week I was taking a video of her doing an app on the ipad she has done correctly a hundred times. She looked at the camera, whined, and then picked every answer except the right one. Kids. I just chalk it up to performance anxiety and try to overcome the urge to explain it to others. It's that whole, "She just did it yesterday, really!" thing that happens to parents when they try to get their kids to perform for someone else.

Touching Lilli's arm does not matter except for when it comes to taking a test for school. The school wants us to test Lilli without touching her so that it is completely Lilli choosing the answers or typing the words. So this is one of the things we have been working on for the past few weeks. To see what she knows and get Lilli working on the right grade level, Leslie has been testing her by giving Lilli a second grade benchmark test. She is enlarging the test questions on a photocopier or typing them in large font. Then she cuts them apart, and lays them out on the floor. Lilli has to read the questions silently to herself, choose the right answer from the multiple choices, pick up the answer, and put it on the question. She does really well with this method. I do not know the final test score yet, but I know she is getting most of them correct. This is proof that she can read, she understands, and she knows a lot! Test taking is not easy, even if you know the material. We are blown away that Lilli is able to do this. We think it helps that Morgan has been working on matching for so long. ABA therapy has laid the groundwork for this method of test taking for school. From ABA, Lilli knows how to pick up a card and lay it on top of a match. A multiple choice test question is basically matching.

We have learned a lot from this method so far. It has taken Leslie several weeks to get through the math and language arts benchmark tests. We now know what Lilli has not learned or was never taught, such as alphabetical order, and advanced patterns. We learned that Lilli amazingly knows about place value and rounding. We learned that we need to work on teaching her how to take a test, because there are questions that require her to "look back" at charts or graphs to answer, and that is tough.

Leslie takes Lilli's arm and has her silently point to the question and then each of the  answer choices. Then she waits for Lilli to pick up the answer she chooses.

This is a language arts question. Lilli sometimes concentrates better when chewing on something, in this case - a lego.

In other ways, we are working toward Lilli being able to prove what she knows independently. We are back to holding the stick while typing. Well, Morgan and Leslie are. I am the lazy one. I hardly ever know where the stick even is most of the time. We were using the stick before, when Lilli was typing one and two words at a time. That was in January. Morgan and Leslie were touching the bottom of the stick as she slowly picked out each letter to type one word. Then Lilli started typing more. Well, now she is typing sentences and paragraphs. At some point, we all stopped using it. The stick makes things go a lot slower. She has so much to say, and it already takes a lot of time for her to gather her emotions and concentrate of typing out her thoughts, one letter at a time. We all agree that it is easier to just hold her hand because we can feel her pull us toward each letter. But that means she is technically not typing independently. And onlookers think or say, "How can you tell she is doing the typing and not you?" Well, we can feel it. But we do want her to work toward independence.

Now Leslie and Morgan are having Lilli type while holding the stick and they are holding the ribbon that is attached to the bottom of the stick. I will put a picture below so you can see this. You just cannot control what a person is typing if you are holding the ribbon attached to a stick. It somehow comforts Lilli and helps her feel more stable to type this way. But it does take longer than holding her hand directly. Lilli is not happy about this. Morgan has even started to have Lilli type one letter without being touched at all. For example she had Lilli independently type the letter "V" for Veggie Tales last week before she could watch a Veggie Tales Youtube clip. She was pretty mad about that deal, but she did it.

The touchscreen monitor. Typing on a touchscreen keyboard that I downloaded for free. See how Leslie is holding the ribbon at the bottom of the stick? Lilli is working on her spelling words here.

Since Lilli communicates through typing, spelling is an important subject for Lilli. Leslie started giving Lilli a weekly spelling list, and she also is working on vocabulary words and definitions. Lilli can easily spell the words while typing on the ipad or the touchscreen computer monitor while we hold her arm. The school has loaned us a touchscreen monitor, and I downloaded a touchscreen keyboard onto my laptop. We hook the laptop up to the touchscreen monitor, and have Lilli type into a Microsoft Word document. 

The touchscreen monitor allows us to save documents in microsoft word.  

Leslie has Lilli make up sentences with her spelling words. Leslie also has her type a lot of other things for different subjects, including math equations. With this method, we can save Lilli's work in a Word file and access it at any time. 
Leslie holds the stick while Lilli types her spelling words and sentences. But we needed a way to test Lilli on her spelling, where we are not touching her arm at all. We put a velcro alphabet on a board so it looks like a giant keyboard. Leslie tells Lilli the spelling word, and Lilli has to pull the correct letters off the board and put it up on a velcro chart on the easel. This is new just in the past week for Lilli, but so far Leslie says she is doing great with it. The idea is that Lilli will prove that she knows how to spell without being touched. We might be able to use this velcro board method to ask her other short-answer, fill-in–the-blank style test questions as well. It takes a lot longer than typing. But this is easier for her to do independently because the letters are so big.  

The latest brainstorm in how to have Lilli prove that she knows her spelling words. The word "DOG" is just for show. She was spelling the words "pharmacy" and "telephone" this past week. 

The benchmark tests will be scored, and an IEP meeting is coming up in just a few weeks. I have been busy compiling pictures and videos of how Lilli is learning, so that the IEP team can see what Lilli is able to do. It has been so awesome for me to look at videos from September and compare them to videos from this past week. Amazing, how far she has come. I thought I would share a few on here for everyone to see. Maybe someone might get an idea to use with a child they know. Testing a non-verbal child who has autism and cerebral palsy is not impossible. It just takes a little creativity, a lot of time, paper, and scissors.

This last video is my favorite. Lilli has a list of spelling words, and Leslie is having her write a sentence for each word. Leslie does not know what Lilli is going to type. The spelling word is "speak." I just love the sentence Lilli writes using the word "speak."

First Time Shopping for Clothes

There are so many "firsts" to celebrate with our kids. Having a child with special needs means you don't always get to celebrate the typical firsts. Sometimes the firsts come much later than other kids… or in a different form. We have had several belated-firsts in the last week. Lilli wore a real necklace (first time ever) that she picked out herself. She tried her very first hot dog (did not care for it). I taught her how to play dominos. One morning she fell, and typed to me exactly where she got hurt. She has never been able to do that before. It is significant because I cannot say to Lilli, "Show me where it hurts" or have her point. She can't. I don't know why, but that is difficult for her. So being able to type to me about where she was hurt was huge.

By far, the most exciting "first" was clothes shopping last weekend. Years ago, I never dreamed that we would take eight year old Lilli shopping at the mall, and she would pick out her own clothes to buy. It was an amazing experience, and we all got choked up about it. We have taken several shopping trips in the last few weeks, and we've taken the ipad to have Lilli type about what she wants to buy. She has her own money from Christmas and birthday gifts, and I want to give her the opportunity to experience going out in the community, making choices, counting money, and interacting with people in a store. It is usually exhausting and afterwards, I wonder why we attempt these trips with three kids. I absolutely could not do it without Morgan's help. Most shopping trips have a highlight of someone collapsing in the middle of the store or top-volume crying and whining in frustration. However, for the first time ever we are able to ask Lilli to pick something, and help her make choices with the ipad. That is a thrill for me. I can actually get her something that she wants, instead of just guessing.

Most shopping trips we have taken included one choice for a small item like something from the dollar section at Target or a book from the bookstore. We have never gone shopping for clothes together. Certainly never actually entered a dressing room and tried clothes on. That would have been sheer torture in the past. I have always just picked out Lilli's clothes and brought them home for her. I have dressed her all of her life, and I never got any inkling that she cared about what she wore. I am a practical, thrifty mom and I don't have great fashion sense. I figured her clothes were fine. Then, a few weeks ago Lilli typed to Morgan that she was not all that crazy about her clothes. She used the word "hate" again. (I need to get on her about using that word so much.)

Before I knew how she really felt about her wardrobe, I was glad to just have her take part in the selection each day. Even if it was half-hearted. For the past month or so I have been putting outfits out and asking her to touch the one she wanted to wear. I was excited that she was making choices. Sometimes I would ask her to type what color shirt she wanted. Meanwhile she was probably thinking, I don't want to wear any of them, mom! I don't like them! No wait, actually, she was probably thinking, I "hate" them.

Hearing that Lilli did not like her clothes was just another slap on the forehead, how could I be so blind? kind of moment for me. Lilli has a lot of elastic waistband leggings and sweatpants. I did not even know what "jeggings" were until about a month ago. (Fashion is not high on my priority list). Her shirts, well, I thought they were cute but as I said earlier, I'm practical and frugal. So Lilli wants to wear jeans and cool tops. Of course! She is a girl. Good for Lilli, my friends are probably thinking, because they know that her boring mother always wears the same pair of jeans and a black top. I think it must be one of the first fights a mom has with her daughter: conflict over the outfit the daughter wants to wear. I had that first fight with Chloe years ago! We have worked it out for the most part. We pick Chloe's outfit out the night before to avoid morning meltdowns. The "outfit," complete with accessories, is important to Chloe. But it never crossed my mind that it might be important to Lilli. I could never have the "What do you want to wear?" discussion with Lilli…until now.

My sister flew down to visit last weekend. She could not stand missing out on everything that has been happening with Lilli. When I told her that Lilli was not thrilled about most of her wardrobe, she jumped on the chance to treat Lilli to a shopping trip to the Justice store in the mall. Apparently, it is THE place for an eight year old to shop. My sister Heather, Morgan, Chloe, Josh, Lilli, and I all went to the mall for this one mission.

Justice is the coolest store for a little girl. Aunt Heather let Lilli pick out what she wanted. We took an armful of outfits back to the dressing room and tried them on Lilli. The whole time I just kept thinking, I can't believe this, we have never done this. She glanced at herself in the mirror and we asked her what she thought of each outfit. We put her in a cool peach and lavender skirt with a peach top, and I loved it on her. I thought it was a keeper, until she typed on the ipad: "Rather have green." Oh how I love this girl. She really has opinions! And oh, how we love the ipad. If she had not been able to type her preferences to us, we would have come home with the peach outfit. You cannot tell what Lilli is thinking just by watching her.

We came home with a bag of awesome clothes for Lilli. (Mostly green.) Chloe got a small little treat, but no clothes this time. I explained to her that this shopping trip was for Lilli and that she needed to be happy for her sister. I told her it was kind of like when you go to someone else's birthday party and watch them open gifts. Sometimes it is your birthday, and sometimes it is someone else's birthday. I wanted her to understand that concept of feeling joy over someone else's happiness. Chloe has had many shopping trips with me where she got to pick things out herself. Lilli is older, and is only just now getting that chance. After I explained it, she was ok with it.

The thing is, every day feels a little like a birthday right now with Lilli. All of these first time experiences are so special because we never knew if we would have them with Lilli. There is always hope for the future. Hope is what keeps us going in life. I would rather hope for something to happen, than live my life thinking, well, this is all there is. And much to my delight, sometimes the things you hope and pray for in life really do happen. Just ask Lilli, who has probably been praying for a pair of jeggings for three years. And now she has the coolest pair of jeggings an eight year old could want.

Lilli's new jeans and top from Justice. I had to make her stand in the corner, poor kid, because the rest of the house is filled with clutter like toys, shoes and random stuff. This was the cleanest place I could find.

 

 

 

 

Using Youtube Skills to Read Books

I've been overwhelmed and emotional these last few weeks about things happening with Lilli. Last week was just another "chapter for the book" I may or may not write someday. I cannot write about it on here. Lilli does not want me to share some things publicly. I will just say that my eyes are being opened more each day to how Lilli sees the world. And it is very different from how most people see it. I am learning a lot from her eight-year-old wisdom. Not being able to talk, she can only listen and observe. She knows a lot, that's all I can say. Her typing and spelling skills continue to increase at an amazingly rapid pace. I think her fingers are just trying to catch up to her brain, that's all.

We are still in the strange stage of figuring out how well Lilli can read. For any new readers, we are in the process of discovering that Lilli already knows how to read and do math. It is only just now being revealed to us because she is learning to type on the ipad.

We are searching for the level that works for her. Morgan and Leslie, her ABA therapist and homebound teacher, prop up books on a make-shift desktop easel made out of a shoebox with clothes-pins to hold the pages. They have Lilli read them and answer comprehension questions about them. Lilli tells us that some are "too easy." The issue that complicates book-reading: she can't turn the pages herself. They are too thin. Her fine motor skills have come a long way, but page-turning is very challenging. She really can only turn the stiff pages of a board book, and all of those are baby books. I have printed things out and made homemade books using a photo album over the years. I have taped things over top of the pages of baby board books. We have put pieces of cereal box cardboard inside page protectors in a binder for her. All of those things worked great in the past while she was reading simple words or phrases. But now she is reading paragraphs… and whole pages of a chapter book. I suppose I could tear up a perfectly good James and the Giant Peach book and put the pages in a binder, or tape it to a board book, but that would require a lot of time… and a lot of tape. We have been brainstorming about this one, and we think we have a good plan to try.

We are going to teach Lilli to read using a Kindle app.

We downloaded the Kindle app onto Lilli's ipad so we can access all the Kindle books. I downloaded a bunch of free classics from Amazon. Also we can access ebooks from our local library's website. We "borrowed" a Cam Jansen mystery ebook from the library. This is all new to me, so we are figuring it out as we go along. The idea is that Lilli will be able to avoid the whole tricky hold-the-book and turn-the-paper-pages issue which is difficult for her, and instead "swipe" the screen to turn the pages on the ipad. I am SO excited about this technology!

Now we have the challenging task of proving to Lilli that yes, she can read and "turn the pages" herself. And that yes, she can go without her Youtube Veggie Tales silly songs for a little while so she can read a book or two. Lilli loves Youtube because she can now do it independently. It is kind of like how Starfall was for her when she finally was able to do the Starfall app by herself. How can she resist the tempting pull of a Veggie Tales video at the mere swipe of her fingers? We will ask Lilli a question and anticipate her typing, and all of the sudden with lightning speed she's clicked into the Youtube app and Bob and Larry are singing about waltzing with potatoes. But I must say, don't knock Youtube, because it has helped us in an incredible, crazy way. Youtube surfing has helped Lilli learn how to scroll through things on the ipad, swipe, and even minimize. At first she was minimizing the screen with her lips. We thought she was kissing the screen, until we realized she was actually closing her mouth on the screen to make it smaller, so she could see the other videos in order to choose a new one. Now she puts her whole hand flat on the screen, and moves her fingers around a little. Her method works.

Teachers and parents might want to consider using Youtube (monitored) as a teaching tool for kids like Lilli, who can transfer these skills to other apps. We teach our kids to do important skills throughout the day while making it fun. It's almost sneaky. Before they realize it, they have learned math and science skills just by doing chores and helping to cook dinner. Sorting socks, reading signs, adding up how much we are buying at the store, measuring a cup of milk for the recipe… all skills that are academically important. Every time I let Chloe help me in the kitchen, I am discussing "following step by step directions" and measurement with her. When we clean up toys, we are sorting, classifying, matching etc. When we eat cheesepuffs, we can talk about subtraction. So this is my argument for the academic benefits of Youtube for a child with special needs. Without too much "torture," Youtube surfing has helped Lilli practice the art of scrolling, swiping, minimizing, tapping, selecting, and I'm sure there's a little reading thrown in there as well. We will now take the Youtube surfing skills and try and transfer them to reading Kindle books, where you can scroll through the table of contents, swipe to turn pages, minimize or enlarge the screen or text, tap on words for definitions, and select books to read.

Now, which Kindle book do we choose to begin this new part of the journey?

Lilli's way of "minimizing"

Cheap homemade easel for books

One method we use for teaching Lilli reading and spelling. 

We used stickers and whatever pictures we could find

These are old PECS pictures we re-purposed

Ugly Ducking book on Kindle app

Sorry About That

I took my last post down. It was long, rambling, and parts of it were preachy. I barely hit on the whole point I was attempting to make, and I apologize. What I should have said simply was this: I messed up. I unintentionally hurt Lilli's feelings. I learned from my mistake, and I will always be learning from this girl.

I want to thank the person who made a general comment on Facebook that made me decide to delete my post. I don't know if it the comment was even directed at me, but it convicted me. I was the one who made the mistake.

I want other people to see me for the real, flawed parent that I am, and maybe find a little hope in our story. I don't want to make other people feel bad. I'm sorry I ranted. When it comes to advocating for kids with special needs, I find it hard to keep it short and sweet.

Tonight instead of writing, I will do what is more important. Lilli asked me if I would help her make Valentines for some very special people in her life.

So glad to do that, Lilli.