Saturday, February 25, 2012

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.





Saturday, February 18, 2012

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

Monday, February 13, 2012

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.

Sunday, February 5, 2012

Trip to the Bookstore

"Would you like to go to the bookstore today?" I asked Lilli.

"Only if just me," she typed back. Guess she didn't want any pesky siblings to tag along.

"Yes, just you and me. You can pick out a book and buy it yourself with your birthday money."

So off we went to Barnes and Noble. I don't think I've taken Lilli there since she was a toddler. This would be yet another experiment, but not as risky as the symphony. I was excited, because Lilli was going to pick out and purchase a book for the first time ever. It was her idea. Last week, Lilli had typed about wanting to "bi" (buy) a book. She also wants to pick out lip balm, but that will be another trip. In the last few weeks, Lilli has drastically improved with her typing. We are now having longer "conversations." She is telling us about her feelings, not just her needs and wants. After several half-started blog posts, I surrender to the fact that I can only skim over all of the stories and tell just a few. I think every day this past week, Lilli typed something so revealing and unexpected that I just shook my head in awe. She is a very special, sensitive girl.

Lilli was quiet as she explored the kids' book section. She walked silently through the different sections and stopped to touch a few books here and there. It was fascinating for me to watch. For the first time, I knew she was really looking at everything and trying to find something she wanted to buy, not just wandering aimlessly. She "shops" differently than a typical kid. I had the ipad but I was letting her check everything out before making her type. I followed her, observing what she glanced at or briefly touched. She found the Elmo section and picked up the same Elmo book that we have at home.

"Lilli, we have a ton of Elmo books. You should buy something that you don't already have," I suggested. I showed her a longer Sesame Street storybook but she pushed it away. Before we left the Sesame Street section, she reached out and grabbed the arm of a dad reading to his toddler son in his lap. Lilli reaches out to strangers everywhere we go. Sometimes people are nice and do not mind. Most of the time people are caught off-guard, and I gently take Lilli and lead her away. She does not understand these social "rules." Or maybe she is going by a different set of "rules." As I am getting to know Lilli's world, I am learning that she sees things in a very different way. She sees things I do not see.

After we had looked through every section, I pulled out the ipad and put it on a bench at the little "stage."

"Did you see a book you'd like to buy?"

"Yes." I asked her to tell me and she typed, "Frog."

We retraced our path and I held out various "frog" books that she pushed away. Finally we reached the science section and she stopped. In front of us were books about pets that came with small plastic animals in a clear tube, and one of them had a frog in it. As soon as I saw it, I knew that was the one. I pulled it off the shelf and she gave it a gentle tap. I wanted to make sure this was "the" purchase, so I gave her a few other choices. I showed her Ramona Quimby, Age 8 but she typed "No. Put back."

She was so interested in the little stage and benches that I let her explore for a few minutes before we left. There was a mom and her daughter sitting there reading. The girl was about Lilli's age. I don't get depressed anymore when I see kids her age. I used to. But now I just concentrate on who Lilli is. Not what other girls her age are like. I also do not make eye contact with people. It's easier that way for me, because there are so many looks, and they are emotion-filled. Sometimes I just want to blend in, but we don't. So I focus on Lilli and our mission, and I block the rest out. I can't care what other people think, especially now. I have to be a role model for Lilli. She crawled over to the mom and girl and reached out to touch their legs.

"That's ok," the mom said. I took Lilli by the hand and smiled, getting ready for us to leave. All of the sudden, Lilli got very upset. I led her to a low, round table and put the ipad in front of Lilli. This is what she typed while whining loudly:

"Hate how other people look at me."

She stumbled on the word "people," but I guessed after "p" and "e" and spelled the rest for her.

"Ok let's go," I said. We went to stand in line, which was the toughest part of the trip. Lilli whined and cried. I shushed her and tried to calmly encourage her while inside I was wanting the sweet, slow cashiers to hurry it up already. When we got to the front of the line (thank goodness) I helped her hand the money to the cashier. She let out a long, loud cry as we waited for the change. I looked at the girl and said "Thank you," and said "Ok Lilli, good job! Here's your new book!" When I tried to help her hold the bag, she pushed it away and cried.

As we pushed through the double doors out into the fresh air, I mumbled to myself, "Well, that was an experience." Too bad we had to stand in line to pay for the book. The rest of the trip wasn't so bad.

In the back of the van, I propped the ipad up and asked Lilli to tell me why she hates how people look at her. "How do they look at you?"

"Like they p" and she stopped.

"Think of how the word sounds in your head, and type the sounds you hear," I said.

"piht" she tried.

"Pity?" I guessed. (I think "piht" is a good phonetic try!) Yes, she knew the word. She has heard Jasen and I talk about this. About a month ago I was talking to Jasen about the difference between pity and mercy. I don't even know why we were talking about it. I am realizing that Lilli is incredibly perceptive and listens to every conversation. I told her to put a "y" on the end.

"Like they pihty me."

I hugged her, took a deep breath, and put on my strong mommy armor. "Lilli, there is a difference between pity and mercy. Pity is when people feel sorry but they do not necessarily do anything about it. Mercy is when a person feels hurt in their heart for another person and they want to help them. Sometimes they can help and sometimes they can't. Maybe people are looking at you with pity, and maybe it is with mercy. But listen, everyone has challenges. Sometimes they are on the outside, and sometimes they are on the inside. Most people have challenges that are on the inside, and you can't see them. Yours are on the outside. Other people see your physical challenges and they either want to help you, or they don't know what to do."

The silent ride home was heartbreaking. She stared out the window with a blank look. I watched her in the rear view mirror and finally decided a pep talk was needed. I told her about Carly, the girl with autism that types and inspired me to teach Lilli how to type. I told Lilli that she is going to make a difference in many peoples' lives too, because of her challenges and experiences. I pulled up Carly's facebook page the other night and showed it to Lilli. That girl is touching thousands of lives and inspiring so many people all over the world.

I think Lilli will one day, too. Actually, I think she already is.

Lilli looking at her new book. Look who has quickly "stolen" her ipad in the background. 






Wednesday, February 1, 2012

Balancing Acts

As each day reveals new facets of "who Lilli is," I am overwhelmed. I am living a typical stay-at-home-mom life, picking up messes and trying to keep everyone fed, clothed, healthy, and busy. (Note that I did not say happy. Sometimes I think it is my job to keep everyone happy, but really, that is not true. First of all, it is not possible. Second of all, being a good mom makes little people very UNhappy sometimes.) Mixed in between the regular every day stuff, I have these isolated miraculous moments throughout, with Lilli. Balancing the miracles with the mundane is a little mentally exhausting. I am constantly making decisions between the two. Pick up the two decks of cards Josh just threw all over the living room…or… type with Lilli about where she wants to go tomorrow on our weekly "field trip." Wash the pots piled high in the sink…or…go watch Lilli do double and triple digit math with Leslie and Morgan and try to capture it on video. Vacuum…or… ask Lilli a few questions about what she thinks about the book we read last night.

Needless to say, my house is a complete wreck. But Lilli's progress is thrilling.

I am trying to be very conscience of my words and actions toward Lilli. She does so many things that make us inclined to treat her like a toddler, but inside she is an intelligent eight year old. I do a quick mental check before I speak to her, thinking about my tone of voice and choice of words. She gets insulted easily. No one likes to be spoken to condescendingly, and now she finally can tell us how she feels about how people talk to her. The biggest challenge is how to say "No" and redirect her when she exhibits toddler-like behavior. She does this thing that many kids with autism do: she drags us around. She uses her whole body weight and grabs my arm to pull me to what she wants. Well, it's easier for her than talking, signing, or going to get a picture out of a book. It's definitely easier than getting the ipad and typing a sentence or two. Being pulled my toddler, Josh, and being pulled by eight year old Lilli at the same time makes it difficult for me to sort out my verbal reactions to the two of them. I have to make sure I respond to the "toddler-like" behavior in an I'm talking to an eight year old – voice when I say "Do not pull on me." But as she types more eight year old things like she wants to go to the mall and buy lip balm, it is getting easier to "see" an eight year old.

Even so, it is a huge challenge.

While I am reflecting on her latest unbelievable, typed revelation, she grabs the spoon I stirred my coffee with off the counter and starts to chew on it. As I typed the last few sentences, I heard running water in the bathroom. A familiar mad dash to the master bedroom, and there she was with the toothpaste tube in her hand and the faucet on full blast. She was in "I'm caught!" position, frozen in place next to my side of the bed. I never learn to keep that bedroom door shut. (See my post about Toothpaste on My Bed and Spoons in the Hamper.) Meanwhile I am daydreaming about how to assess her knowledge about math. The little we have "tested" her on is blowing me away, and I'm sure it is just the tip of the iceberg. All of this constant mental-checking and "where do we go from here" thinking is making my head spin.

Last night I read the first chapter of Little House in the Big Woods to Lilli. She chose it. I gave her the choice between the elementary school version (My First Little House Books – picture book) or the REAL thing. I have the boxed set. I have had it stored on the top shelf of Chloe's closet since she was born, waiting to relish the first time I could read it to my daughter at bedtime. Another shock of my life, I am reading it to Lilli first instead. I put the two on the floor next to each other, and she pointed to the thick, chapter book copy. Oh I know Chloe might like to listen to it too. But this is something special for just Lilli and me. We put Chloe to bed first because she gets up earlier for preschool. And, of course, I play up the whole, you are the oldest so you get to stay up, Lilli. She has to get something that Chloe doesn't get, and those perks are hard to find for Lilli. We sat on the couch and I read the entire first chapter to her. I had not read it in years. I did not remember that it goes into so much detail about Pa killing deer, hanging them in a tree so wolves cannot reach them, and skinning them for the smokehouse. They butcher a pig and Mary and Laura hit the blown-up pig's bladder back and forth like a balloon, and have a great time roasting the pig's tail over the fire. As I was reading it, I thought, no way is Lilli going to connect with this. What does she know about this stuff? Is she even interested? I tried not to interrupt myself to explain things as I was reading, because that can be annoying when someone is reading aloud. But there are big vocabulary words and concepts I am sure are new to her. Despite the entire chapter being about hunting and preparing meat to be stored for the winter, Lilli loved it. She grabbed my neck and squeezed it many times, laughing and putting her hand on her throat while I was reading. That gesture means she wants to say something but can't get it out. I kept on reading, not wanting to interrupt the moment by making her type.

This morning this was one of our conversations on the ipad. I typed the questions silently and she read and responded:

Me: "What was the first chapter about in the book I read to you last night?"

Lilli: "Makin met" ("Making meat.") – I love it.

Me: "What was the girl's name in the story?"

Lilli: "Lur"

Me: "Yes, Laura. Do you like the story so far?"

Lilli: "Yes"

Me: "What is the name of the book?"

Lilli: "In the woo"

Me: "Little House in the Big Woods. What was the name of the dog in the story?"

Lilli: "Jak"

Pretty cool, huh? Or as Lilli would type, "cul."

Yesterday, Leslie typed this question silently for Lilli to read and answer: "What are you most proud of doing?"

Lilli typed: "Being just me."
Little brother making a mess a minute. PJs don't match cause I'm behind with the laundry....oh well.

Not too much else I can say about this one.