Saturday, January 28, 2012

Not Speechless…Brilliant

I am utterly speechless at this week's events. It doesn't matter, though, because Lilli is certainly NOT speechless anymore. And that is the miracle that continues to unfold at our house on a daily basis. From last Saturday to today, we have traveled years. As always, there is too much to tell in a blog post. It would be a book. Perhaps one day, it will be one. If not by me, it will be authored by Lilli herself.

I have to admit I am a little frustrated at the timing, for the sole reason that I do not have enough time to write every tiny detail down. Jasen is in his most intense time of school yet; 12 hour days taking classes in the mornings and treating patients in the clinic all afternoon until after dinner every night. For the past two weekends he has been gone all weekend for board reviews, and boards are coming up in March. If he ever seems like the absent father in my blog, he is far from absent. What he is doing is all a huge part of Lilli's story, which will just have to come out in future posts. He helps when he can, and he is a great dad. In the meantime, I continue to wade through the days, sleep deprived from a sick toddler this week and only slightly overwhelmed by the mounds of housework. But my heart is full of joy, and my mind full of wonder and amazement. I feel compelled to let the housework go for a little bit and write as much as possible while Josh naps. Mainly, I want the world to know that a non-verbal child who does not make eye contact, chews on toys and makes squealy sounds at inappropriate times just might be highly intelligent and very aware. I want other parents like me to look at their child with hope and possibilities. And I want others who know Lilli to know how to treat her.

There is no way I can sum up in one post everything that happened this week. I am unsure of how to begin. Lilli is typing incredible things, revealing new heights of her intelligence. She can read several sentences at once and do math. She is typing longer sentences and answering questions. Her true feelings about people and situations are coming out. "Treat me lik a big grl" is her most-often typed phrase. This week she told me that she wanted to read "big girl books." We stopped reading the baby board book Moo, Baa, La La La to her and started with her very first book request: The Secret Garden. ("Secrt grdeen"). It happened while I was reading Ten Apples Up on Top to her very slowly, and she was mad at me. I asked her to type and explain why. It turned out she wanted me to read a different book, The Secret Garden. She told me she had seen it in Chloe's room on the floor once, and liked the cover. She described it to me perfectly. ("gree frrst key" – green, forest, key). I had not seen the book in months, yet she typed the title and told me what it looked like. I found it in a box in storage in the basement. It had been in that box for months. Yet she remembered the cover and how to spell the title (close enough).

When I pulled that book out of the dusty box in the silent basement and looked at it with a flashlight, the "scales" fell from my eyes.

She's not just "aware." She's brilliant.

How did she learn how to read? How long ago had she seen that book and wished someone would read it to her? Possibly last summer. Maybe farther back than that. It was too advanced for Chloe, so I'd packed it in a box labeled "older books" along with some Magic Treehouse books and Charlotte's Web, among many other favorites of mine from my teaching days. Does she have a photographic memory? How did she remember the title? I have never typed the words "secret" or "garden" with her. I asked Leslie and Morgan too. No, they had not either.

It was not the full length novel, it was a shortened chapter book version. She sat and listened to the whole thing, and typed that she loved it. She since has listened to The Velveteen Rabbit, Cloudy with a Chance of Meatballs, and several other short chapter books. I came home with a stack of Cam Jansen Jr. Mystery books yesterday. She likes them. Leslie started reading Roald Dhal's The Magic Finger to her. We literally jumped from baby board books to second and third grade books in a day. Unbelievable. I don't care for the phrase, but I feel like we have been "dumbing her down" all this time because we did not know she could read. No wonder she sat and flipped through those baby board books with boredom. She has had them for eight years. Nothing against Brown Bear Brown Bear, What Do You See? but sometimes you just gotta move on. The important detail about all of this is that Lilli does not act like she is listening. She crawls around, chews on Lego Duplo blocks, and rarely even gives the book a quick glance. For years the teachers at school were making her sit at a kidney bean table and trying to make her flip through board books and LOOK at the pictures. TURN pages. POINT at the picture. She hated it and struggled, most of the time throwing the books on the floor in anger. I guess she doesn't need the pictures, and she probably was mad because they were "baby books." I'll have to ask her about that.

Among many other revelations, she also typed that she was mad because the nurse talks to her like she's a baby, that Chloe "bugs" her ("her bug me"), and that she wants to ride a bike like Chloe with two wheels. She is not happy with how differently we treat her and her sister. How do I deal with this? Lilli cannot brush her own teeth or dress herself. She has a long way to go with using utensils and has never attempted to brush her own hair. She does not want to be treated like a baby, yet she needs help like one in so many ways. I have been focusing on the things she can do that Chloe does not, such as read, type, and ride a horse. (A therapy horse, but still.) This is sibling rivalry through an ipad, a new experience for all of us. Lilli's pent up years of frustration are tumbling out through mixed-up, misspelled words on a screen. The "auto correct" feature makes things even more confusing.

Her eighth birthday celebration is too much to write about in this post, but can be summed up with one word: moody. She named her birthday fish "Grover," and loved her new Polly Pocket doll. (I told her that is something an eight year old would like. At the last minute I had to run out to Target and shop in the "big girl toy" section to make sure she got something that Chloe did not already have. Just a few short weeks ago I was shopping in the preschool Elmo section for her.) She can match rhyming words, listen to an entire chapter book and answer questions about it, and seems to know way more about math than we realize. I predict that this coming week we will be blown away by her knowledge of math. I told her that I would teach her how to play the piano, and I have been talking to her about chords, sharps, flats and octaves while using a piano app on the ipad. Every day this week, she has stood in front of our piano and experimented with two note "chords." Will a child with cerebral palsy be able to play the piano? Only time and miracles will tell.

Dumbfounded is an understatement for all of us right now.

I read the "Hello Reader" level 3 version of A Girl Named Helen Keller to her today. After I'd read her the entire thing and she hugged and kissed me at certain meaningful parts throughout, I asked her what she thought of the true story (which parallels Lilli's in many ways.)

"Really cul." (really cool)

She told me last night that she knew that no one believed in her. I asked her what changed. She typed "you helped me." But I think Chloe actually has more wisdom about all of this. This morning I asked Chloe, who has been getting the brush-off a lot his week as I've focused on communicating and typing and reading with Lilli, "Do you know what is happening with Lilli right now?"

Chloe answered, "Yes! She knows how to read! It's a miracle! Jesus helped Lilli know how to read!"

Yeah, I think so too Chloe.

New book for her birthday from Morgan. Lilli picked out her own outfit. Such a girl.

Reading her birthday card from mommy and daddy. Earlier, she typed that she was mad because Chloe was so close to us, and did not want her next to her when we sang happy birthday. Oh the sibling rivalry!

working on rhyming words with Leslie

Wednesday, January 25, 2012

On Purpose (Happy Birthday, Lilli)

Lilli was born during an ice storm, by emergency c-section in January 2004. 

She had stopped moving in the womb. I knew something was not right. We drove to the hospital through sleet on deserted, icy roads. My husband reached his hand out the window and continually grabbed the moving windshield wipers to thump the ice off, because they kept freezing and getting stuck. I called a few people on my cell phone. We were scared. We did not know what to expect. The doctor was meeting us at the hospital.

Upon being pulled out, she stopped breathing and had to be rescusitated. Twice. She was having seizures, and was transferred to a different hospital to their NICU. To this day we do not know what caused her distress. But lack of oxygen caused damage to the parts of her brain that control vision, language, and motor function. 

Before they took her to the ambulance to be transferred, they wheeled her to my bedside inside an NICU transport incubator. She was intubated. I reached down and stroked her fragile body while my eyes and heart overflowed with the greatest mixture of love and pain I have ever felt.

That first night of her life was the longest night I have ever endured. I was separated from her, and my husband Jasen went with her. Frank, the pastor of the little church we belonged to in Virginia, went with Jasen and spent the night with him at the other hospital while newborn Lillianna Jae endured many tests at the other hospital. Frank's wife, Joyce, spent the night in my hospital room to keep me company and help me, since I had just had major surgery. I will always treasure in my heart and be grateful that they spent the night with each of us, as we began the toughest journey of our lives. I was transferred to her hospital to be with her the next morning. I hear that almost never happens. I spent several days at the second hospital, recovering from a c-section, traveling back and forth from my hospital bed to Lilli in the NICU.

There were two doctors in the NICU that gave us two entirely different prognoses. The first doctor told my husband in a very cold, distant manner that our baby had brain damage, that she would never walk or talk, and she would be mentally retarded. Jasen had to walk out of the NICU, climb up the stairs, come to my room and break that news to me. He held my hand and we cried and prayed.

We were stunned. We needed more information, and later found a different doctor who sensitively explained to us that we would not know how extensive the effects of the damage would be until she grew older. He pulled up the MRI of her brain and pointed out gray areas as he carefully explained the damage. But he gave us hope. He told us that we are "amazing creations," and that sometimes a baby's brain can "re-map" itself as the baby develops, and use other parts to compensate for the parts that were damaged.

We chose to listen to the second doctor, and clung to the hope of miracles.

At one year, she was diagnosed with a type of cerebral palsy called spastic diplegia. Parts of her brain were damaged that affected her ability to use her legs. They were stiff. It was too early to tell whether she would ever walk or even crawl. She was still having seizures. We were also concerned about her speech delay and trouble with choking and gasping every time she ate or drank. She started physical, occupational, and speech therapies. Her eyes were crossing and she needed surgery. We prayed desperately for her brain. We remembered what the second doctor had told us. We prayed constantly that her brain would be healed and that it would "re-map" itself like the doctor said was possible.

Many people over the years have asked what caused Lilli's brain damage. As any mother might, I felt guilty those first few years and wondered if it was my fault that she had cerebral palsy. Of course not, you think, as you read this. If you had a baby with special needs, I'll bet the thought What happened? Crossed your mind. Maybe once. Maybe a thousand times. It's only natural. It didn't help that everyone we knew wanted to know "what went wrong" as well. I desperately researched the causes of CP. It was almost like an obsession. For a few months I spent all of Lilli's napping hours on the computer, typing words in a search box. We met with specialists. What did I do wrong during my pregnancy to cause Lilli to be born this way? I agonized. What happened when she was in the womb? Or was it the actual birth process? Or both? There were no answers for me. No specialist, book, or website could tell us what caused this to happen.

Time passed. I had not quite given up on my search for answers, but I did not know where else to look. Then one Sunday morning when Lilli was a little over one year old, our church had a guest preacher. He had us turn to the book of John as he talked about Jesus healing a blind man. He read John 9:1-3.

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." (NIV)

That was a life-changing moment for me. The words of Jesus pierced my heart and I had the realization that Lilli's disabilities were not a result of something I had done wrong. I understood for the first time in my life that God really is in control of absolutely everything. He had a purpose in Lilli being born this way. He is not cruel. He did not forget about Lilli, or Jasen and me. He did not turn his back and accidently not make her turn out "ok" when she was born. It was not that I ate or did something wrong during my pregnancy and God did "not notice" or help my unborn baby. Every child that is born into this world is a complete and total miracle. If you have ever watched a baby born and held him or her in your arms in the first minutes of life, you knew this. Even if you did not believe in a God, you knew that baby was a miracle, not created by YOU.

God had a purpose in creating Lilli to be exactly the way she is. I did not understand it. But I did understand that God had perfectly and purposely formed her to be born this way so that His work might be displayed in her life. And in my life and in my husband's life. God does not make mistakes. He never says "Whoops." He is not distant or unaware. He is perfect, and He is great with fine details. He is the ultimate "event planner." Psalm 139 says "All the days ordained for me were written in your book before one of them came to be."

It is difficult for some to understand, or believe that God, who is so loving, would let a child be born with a disability. After that day, I slowly began to see Lilli as a perfect creation designed by God on purpose. After watching God work in so many ways in and through Lilli over the course of her life so far, I know without a shadow of a doubt that God loves my Lilli with a fierce, endless, perfect fatherly love that I cannot even fathom. He takes care of her more than I do. I wish I had the time and memory to write even a fraction of the stories of ways I have personally witnessed this. If you think I am a sad, deluded person, then you probably don't know my God personally. And I wish you would give him a chance. He is real. I'm not perfect. People that believe in God and know Him personally are not perfect, they are hypocrites who are filled with failures and they love God because He loves us, despite our failures.

Eight years have passed. I will not sugar-coat them. They were the toughest eight years of my life. Some things have gotten better, and some things have stayed hard. Some things are even continuing to get harder. But now, Lilli can walk, run, read, type words and short sentences on an ipad, feed herself pancakes and chicken nuggets, and has the best laugh I have ever heard in my whole life. She has touched the lives of so many people I cannot begin to count them. When I first started this blog, I wrote that Lilli was a "mystery." Now I think it is better to describe Lilli as a "miracle in progress." From the moment she was born to this very day that I write this, the list of miracles is endless. From the things she is doing despite her traumatic birth and ensuing medical problems, to the way she has touched so many other people's hearts and lives. Most of all, my husband's and mine. If you are reading this, she has touched yours.

"… this happened so that the work of God might be displayed in his life." I feel so privileged to have a front row seat in watching God work through Lilli, and display his glory through her.

It takes time for a mother to come to this realization. I wonder if every mother of a child with a disability goes through this phase of guilt and wonderment. It is so typical for us to blame ourselves and think that we either did something wrong, or we did something to "deserve this." But after eight years, I write with tears in my eyes that I feel blessed beyond belief to have Lilli for a daughter, and humbly feel that I "don't deserve this" blessing of abundant miracles and hope. The world tells us that there is something wrong with children with disabilities, that they are a burden. I'm not saying it isn't hard. It is incredibly hard. But life is hard for everyone, in different ways. There is nothing "wrong" with Lilli. I know that now. She is not a mistake. She is a beautiful, awesome little person who needs extra help. And as we help her, we are drawn closer to the One who created her. She is… well, she is Lilli! Handmade personally by her Creator with great care. Just like you and I were.

Thank you God, and happy birthday, sweet Lilli.

A side-note: Years after that first doctor in the NICU broke the devastating news to Jasen that Lilli would never walk or talk, we were in the ER with Lilli again. She was about four, and had just had yet another seizure. The three of us were waiting in a room in the ER for the on-call neurologist to come in. After several hours, he came to check on Lilli. After a few moments, he said he would be back. Jasen turned to me and said, "Jennie, that was the doctor!" It was the very neurologist that had given Jasen such bleak news on her second day of life in the NICU. When the doctor came back, Jasen could not help himself.

"You were Lilli's doctor in the NICU when she was born," he said. The doctor wrinkled his brow in confusion. He did not remember us. "You told us when Lilli was born that she had brain damage, and that she would never walk. She is walking now. Our God is an awesome God, and He can do anything. You need to give parents hope when you give them news like that." The doctor said nothing. He could not get out of the room fast enough. We never saw him again. But now I know how poetic justice truly feels.

It feels good.
Baby Lillianna in the NICU

Jasen talking to baby Lilli...a daddy's girl from the very beginning

Lilli, running at age seven



Monday, January 23, 2012

Look at Her Now

So sorry about the poor quality, my camera is definitely not working right... but you can get a glimpse of what Lilli did today with Leslie. Leslie typed the question "what color is the dinosaur?" on the ipad, but did not tell Lilli what it said. She helped Lilli point to each word to get her to read it silently. Lilli read it and typed "green." She touched the letter "n" several times because it  would not come up. Finally Leslie helped her push hard on the "n" and it worked. This is one sample of many that Lilli read and answered today for Morgan and Leslie. Lilli is definitely typing the letters herself, but Leslie keeps her hand under her arm for support. We hope to eventually fade the support away completely. Lilli gets a ton of credit for typing so well on a small touchscreen despite her cerebral palsy! After she finishes typing, she rubs her hands together because that is her sign language sign for movie. Pretty much she's saying, alright I typed the answer for you, hit play! 

Saturday, January 21, 2012

Questions, Answers, and Attitude

We are flying at a fast pace with Lilli. It's almost like time travel. I feel like we have catapulted from kindergarten to second grade in just the last month. In August when we started school, she was working on picking the letters "L" and "I" out on the keyboard to spell her name. I remember helping her type a few words such as Mom, Dad, and go. But I was making her type them. She did not know how to spell them and type them herself. And read? That was a distant dream. Now five months later, she is typing her own sentences and her attitude is coming out though the ipad. Yesterday morning she typed "Let me be." Tonight takes the cake, though, because she typed "Hate u." To me.

I was expecting to hear that from Chloe for the first time, not Lilli. I still cannot believe it. She was furious with me because I would not give her a cheesepuff. She was crying mad, and I told her to use words. So she typed "Hate u." I was a little shocked. But I am getting used to this now. She is smart, sassy, and still frustrated, but now in a different way. She realizes that she has choices, and a voice. I think that awareness is actually causing her to be more frustrated. I don't even know how to explain it. I feel as if she is "growing into her age" at a rapid pace. I used to look at her like she was a three year old in a seven year old body. But this is not a three year old. But she cannot do everything a seven year old can do. She is a mixture of ages right now. She still loves Elmo. She is extremely delayed in her self-help skills. But she is reading and typing like an older child. She types the word "because" a lot. She absolutely knows how to read and spell a long list of words, and she is just now beginning to use punctuation. She wants her independence so much. But she needs a lot of help. And she really wants to express her feelings but can only do it through crying, yelling, or taking the time to type words. Imagine if you had to type out your anger all the time to your parents or your spouse. It's not even as satisfying as writing, where you can scribble hard or break a pencil if you are really angry. It's typing. And it's not like you can bang the "keys" on a touch screen. I can understand why she is still frustrated.

I explained to Lilli that she should not use the word "hate," and she should not say that to her momma. I helped her to do the sign language sign for "sorry." She stood there for a moment, and then she typed "Do u love me?" Wow. I told her that I loved her, that she was my little girl, and that there was nothing she could ever do or say to make me stop loving her, because she is mine. We hugged, and it was over. I cannot believe I had that "conversation" with Lilli tonight.

The little pictures do not come up above the words until after Lilli types the words and taps "insert."
So much has happened in just the past few days with her reading. We think that she might actually be reading ON grade level. That blows my mind. Now I am wondering, what comes next? This is uncharted territory. I think the logical next step is to assess Lilli somehow to see what her reading level is, and then we will know what level books we can use to teach her more. We might have to take an educated guess. But I think we might be able to take an assessment and somehow accommodate it for a non-verbal child who reads and types on an ipad. This should be an interesting challenge.

My sister, a kindergarten teacher, suggested that we informally assess Lilli using comprehension. For example we type a sentence silently, have Lilli read it to herself, and then ask her a question about that sentence. If she can type the correct answer, she can obviously read it. Leslie and Morgan began typing questions to Lilli silently on the ipad, having Lilli point to each word and telling her to read it, and then having her type the answers. We were amazed at the results. She can answer all of the questions. Leslie typed "What is your name?" and she typed back, "Lilli." I wish I had been there to see that. Today Morgan silently typed "What do you like to eat?" and Lilli typed "Cheesepuffs" perfectly. "What color is the table?" Lilli typed "brown." She silently typed her other questions too, and Lilli typed correct answers to them all of them. This afternoon Leslie typed questions to Lilli about scenes in Youtube Baby Einstein clips. They would watch a few seconds and Leslie would pause it and silently type a question about what they just watched. Lilli loved it. For example one question was "What color are the apples?" Lilli typed "red." "What are the girls doing?" Lilli typed "swing." My favorite was "What did the horse do?" Lilli typed "Eat flowr" (flower.)

I have pulled out most of my teaching stuff that I have been saving up for a moment like this. (Such sweet satisfaction for a packrat former educator.) In the past few days I've pulled out boxes of assorted word flashcards and sentence building activities. We went to the library together and checked out another stack of books. (Lilli likes Word Bird books.) We hooked the touch screen monitor to a computer downstairs so Lilli can work on More and We put letter stickers on the computer keyboard and Lilli is typing in Microsoft Word to practice using a real keyboard. Leslie and Morgan are typing with Lilli like crazy, and working on another entire list of skills as well. Leslie is using word cards and pictures to have Lilli read and identify words by pointing at pictures. They are working on the days of the week and weather words, and computer skills. Morgan is continuing to teach Lilli to sign, match, imitate actions such as kicking and clapping, and working on self-help skills like pulling up pants and socks. She has a long list of things she works on with Lilli everyday besides typing.

I lay awake at night (well, honestly only because a child has woken me up) and think about what is happening. I think about the next step for Lilli. It's good to keep moving, to keep challenging her. We need to see what she can really do. But not for our sake. For Lilli's sake. I love that this week, Lilli learned that she can read. I love knowing that soon, we might know just how well she can read. For a stay-at-home mom who does the typical stay-at-home mom stuff day in and day out, this is a thrilling experience that gives me possibilities to look forward to when I wake up each morning. Unfortunately, she is not doing all this great stuff with me. But that's because I'm the MOM. I'm the one she yells at and tells me she hates me. Well, I'll take it. Not the "hate u" part. I'll take the fact that she is reading and typing with Morgan and Leslie each day. I'm the one making the pancakes and chicken nuggets right now. I'd better go get to the laundry and dishes.

Sunday, January 15, 2012

Do I Read?

Every day now, several new things happen with Lilli that amaze me. I could not possibly write it all down. I've tried to write as much as possible throughout Lilli's life. I am so glad I have, because reading it reminds me of how good God is. Even through the worst, toughest times, He is there, and He is good.

Lilli is continuing to type happily with the teacher and therapist, and depending on her mood, with Jasen and me. Something happened at breakfast this past week. It shook my world a little bit, in a good way. Later when I was driving to get Chloe from preschool I thought about the future. I now have a vision for Lilli that I'd never had before.

That morning at breakfast, Lilli typed this:

"Do I read"

I think it was the first question Lilli's ever asked me, out of the blue like that. In other conversations, questions have come up based on what we were discussing. But the questions were usually just the single word "why," following something I had just told her. This was out of the blue. I was talking to her about the new pancakes she was eating. She was happily eating and enjoying our time together while Josh slept and Chloe was at morning preschool. Then she grabbed my hand and typed "Do I read?" (minus the question mark.)

I was a little confused at first by the question. But I think I know why she asked. We all use the words "type," "spell," and "write" with Lilli. We've been focusing on getting Lilli to tell us things, spell words, type sentences. I don't ask her to "read this" because she can't read it to us out loud. I doubt I used the phrase "read this" in the last month. Or maybe even never. So, as crazy as it seems, she knows she can type and spell, but she was not exactly sure if she could read.

"Yes! You can read, Lilli! You can read. Look, I'll type words and you read them." I silently typed "I love you." She sat still and watched. We usually tap the "speak" button, and it says the words on the screen out loud. But I did not hit "speak." I took her finger and made it touch each word. I imagined that she was hearing the words in her mind. We sat there in silence, and she looked at the words.

"Do you know what that says?"

"Yes," she typed. She turned and gave me a kiss and hug. She squeezed me really hard.

"Well, then you can read! See? You know what those words are, and you just read them." I felt proud, and a little emotional. It felt like another door opening up for Lilli. I shake my head and blink at this kind of stuff every day now. I cannot believe how amazing it is, and how it is all happening so fast. Thinking about reading with Lilli got me excited, and made me think about actual books, not just words on an ipad screen. I wanted to open a real book to show her that she could read some words in it. A children's "My First Read and Learn Bible" board book was already sitting on the table nearby. I opened it up to the first page, and propped it up. I took her hand in mine and pointed her first finger to each word as I read them to her: "God made the earth and the sun. He made the moon and the stars." She really looked at the words and followed them. It was the first time I ever saw her do that.

"See Lilli? You're reading those words! You know how to read!" She giggled and touched her nose with happiness. I love that the first sentence I had her read was about God, and the very beginning. Beginnings are awesome. I love this beginning with Lilli right now.

I thought about getting some books for Lilli at the library. "Would you like me to get a book or a movie for you?"

"Yes," She typed. I asked her which, and she typed "book." When I asked her what she would like it to be about, she typed "letters." Ok. Again this girl surprises me. I thought, maybe she wants to get an alphabet letter book because she realized she knows how to read? Who knows? And just how did she know how to spell the word "letters?" It's actually nice to be clueless sometimes. Late that night I went downstairs to grab a few index cards, and there it was in the stack: a card with the word '"letters" written out neatly in black marker. Either the teacher, or the ABA therapist, or both of them, had been teaching Lilli how to spell the word "letters." Above the word was a small picture of alphabet letters. Huh. How about that.

I came home with a bag bursting with books from the library. I scoured our own bookshelves looking for books with simple words, one sentence per page. What a difference between my two emerging readers right now. With Chloe, I say "What does this say? Or, "Let's read this together." I tell her, "You can figure out what this word is, look at the first letter and make its sound," and so on. I just do not do that with Lilli, because teaching Lilli to read has been so backwards. Parents of children with special needs, it IS possible to teach a non verbal child to read! You just have to do it differently! Very differently. And you need help. The people that help you have to really believe in your child. If no one believes in your child but you, then you are the one who is meant to do it.

I am very blessed to have wonderful help every day from Lilli's ABA therapist and homebound teacher. I could not possibly do this myself with two other young children. Lilli needs someone working with her all day long. For the rest of last week, Morgan and Leslie both read books to Lilli and had her type the words from the book on the ipad. Lilli is very interested. It is totally new to her. She has always loved books. She has trouble with turning pages. But she has some very favorite board books that she has flipped through countless times over the years. Perhaps she had flipped through them so many times, she stopped noticing those little black symbols on each page. Maybe she just focused on the pictures and never realized she could read those actual words. Maybe someday she'll tell me.

The vision I had for Lilli while I was driving down the road that day was of Lilli as a teenager someday, reading books. Learning. Communicating with others. I even thought of her in school again years from now, with her ipad. I do not know how independent Lilli will be. We won't know what she will be like when she is older until we get there someday. But now instead of a cloudy unknown future, the fog is starting to clear a tiny bit for me. I can see her reading, learning, communicating, making connections. When a person knows how to read, they can learn about anything in the world. It changes everything. We all know that being able to read is important. But until that morning at breakfast, I had never felt that importance in such a profound way. I guess it is the difference between taking something for granted, and knowing that you have been given a precious gift.

Lilli does that. She helps me not take things for granted in life. She reminds me of the many gifts we have in life, every day. That day, I realized that being able to read really does open up a whole new world for a person.

It is a gift.

Thank you, Morgan, Leslie, Jennifer S., Sarah M, and Lisa W.; Lilli's teachers over the years, and thank you to Maria, her aide last year. Thank you to every person who has ever read to Lilli, helped Lilli look at a book, or pointed out an alphabet letter to her. Thank you for believing that a child with special needs can learn to read. Thank you for believing in my child. Thank you for this precious gift of Lilli reading. The value of this gift can never be measured.

Wednesday, January 11, 2012

“Get Som” Pancakes

After Lilli told me she "hates" the roasted chicken we have been giving her, I made special chicken nuggets, just for her. She loves them.

It is the "New Chicken" in our house. Chloe likes them too. The breading is made with coconut flour. Lilli can't have regular flour or nut flour. Flour has been a big problem for us, until we recently discovered coconut flour. My mother in law helped me break through my fear of trying something new and messing it up. She made Lilli a loaf of coconut bread when she was here for Christmas. It's good. It's like banana bread, only instead of tasting like bananas, it tastes like coconut.

Hm. That came out sounding pretty dumb. Well, I'm not sure how else to describe it. But Lilli likes it, and that's all that matters. Since the bread and the nuggets turned out, I felt bold enough to try another new recipe.

Yesterday morning I made Lilli coconut flour pancakes for the first time. She loved them. I asked her if she wanted pancakes and she typed "Yes." You know she really wanted them because she typed the entire word, not just "Y." As they were cooking, I picked her up, put her on my hip, and pointed into the skillet.

"See, Lilli? Those are your pancakes cooking, just for you! What do you think?" I asked. I put her down in front of the ipad and took her hand. She typed,

"Get som."

I love this girl.

"Yes, you can have some pancakes when they are ready," I laughed.

Lilli never gets pancakes for breakfast. Well, she always steals mine. She's gotten good at it too. Sneaky. I feel so bad, my child has been stealing my pancakes and her siblings' chicken nuggets all this time. I wish I had known about coconut flour sooner so I would not have unintentionally taught my daughter to swipe other people's better tasting food behind their backs.

The pancakes were delicious, and Lilli obviously enjoyed them. I asked her if she liked them, and she typed "Yes." I think she again was confused about this new freedom with food, though. While I was still putting things on the table, I turned my back on her for a few seconds. When I turned around, the plate of pancakes was missing. And so was Lilli. She had grabbed the whole plate-full and ran off with them. I think she must have thought she had to steal them to eat them. Poor child.

Lilli's words "Hate chicken" have inspired me to cook all new things for her. Bread, chicken nuggets, pancakes. The Specific Carbohydrate Diet is a challenge at times. But there are lots of new recipes for me to try. Next I think I will try coconut flour cookies. We are cuckoo for coconut right now.

Tomorrow morning when Lilli "gets som" pancakes, I will remind her that she does not have to swipe them and run into the living room to eat them. Now that I think about it, I often stand and eat my food at the kitchen counter so that Josh and Lilli don't grab things off my plate. Chloe has learned that she cannot eat cereal or certain snacks at the table near Lilli, because Lilli will reach over and try to grab some. Here we all are, taking our food and hiding it or shielding it to eat it. I think we have some bad habits to address around here!

My mother in law found a recipe and changed it for Lilli. So she gets the credit for it!

Chicken Tenders - Mitzie Christine

1 cup coconut flour
minced fresh garlic and onion - total 1 tbsp
1 egg
boneless all white meat chicken tender strips
olive oil & butter - 2 tbsp each

Beat egg and add garlic and onion to egg in bowl. In another bowl, put coconut flour and a few dashes of salt. (I pounded the chicken strips out to make them more tender for Lilli. Then I cut them into bite sized pieces.) Dip chicken strips/pieces in egg mixture, then in coconut and salt mixture. Fry in olive oil and butter a few minutes on each side until browned.


Saturday, January 7, 2012

Turn on the CC, Please

Someone gave us a valuable tip a year ago. Lilli's personal aide from school was here at our house. A movie was on, probably Elmo or Veggie Tales. She casually suggested we might want to turn on the closed captioning feature on our tv.

"You never know what words the kids might pick up from reading them as they watch tv," she said. I shrugged, picked up the remote, and turned the CC on.

One year later, we still have never taken it off.

Oh trust me, I am sure others have been bothered by the intrusive blocks of words on the screen as they have watched movies with us. Sometimes they come up in a black strip and block a little part of the bottom of the screen. Sometimes the words are "see-through" and not as noticeable. Either way, the words are there, in the way, and your eyes cannot help but go right to them and read them. I find it impossible to ignore them.

That's what I hope happens to Lilli when she watches tv. My other children too, of course. But since Lilli's main method of communicating now is through typing on the ipad, I am overly eager for her to hurry up and learn to spell a lot of words. It is frustrating when she wants to type a word but her finger hovers over the screen. Sometimes she types "hjfkdshjkl" and that is her way of telling me she can't spell what she wants to say.

No one is deaf or hard of hearing in our home, yet now I am so accustomed to it, I find it difficult to watch movies without the silly words on the screen. Take me to a foreign film and I am sure I'll feel right at home. My husband feels the same way about CC, and says he likes to read it so he doesn't miss anything. (I secretly hope it is doing something positive for my under-exercised, conversations-with-preschoolers-all-day- brain. I feel so much smarter from reading the medical terms on the screen while watching old episodes of House late at night. I can now spell "amyloidosis." Whatever that is. They mention that diagnosis a lot on House.)

I believe that Lilli has learned a lot from these words on the screen. I have watched her eyes looking at the words. Ok, so what if it's a Veggie Tales Silly Song about the "Yodeling Veterinarian of the Alps," she might learn how to spell the word "veterinarian!"

Awhile back when I posted about Lilli knowing how to type Fozzie Bear (she spelled it "Faz z") from the Muppets, the ABA therapist wondered if Lilli might have seen Fozzie's name on the closed captioning. That had not occurred to me. Now that we are thinking about it and we are all so amazed by her rapid progress in typing skills, I think that she may have picked up more than we could measure from closed captions. Think of what a child could learn by reading along with a movie. There's spelling, spacing, sentence structure, capitalization, punctuation, pronunciation, and sight words. You see the words while hearing them. I think Sesame Street is great, but Sesame Street with closed captions is even better! I know closed captions are annoying to some people who don't need to read what they can already hear. But I figure, if the kids are going to watch a movie or tv show anyway, they might as well be learning to read a few new words while watching.

It's Saturday night, and we have been watching/reading the debates. Let me tell you, it is necessary because Lilli is playing with her favorite Christmas present from Nannie and Pop Pop: "Rock and Roll Elmo." He is LOUD and Lilli is laughing. When I walked into the room, I instantly started reading what they were saying because Elmo is deafening.

If it's not too late after the debates are over, we might watch part of the movie "The Grace Card." I can't wait to read it. I mean, watch it.


Wednesday, January 4, 2012

“Hate Chicken”

Typing has finally clashed with Lilli's special diet. I know some of you who have spent time at our house are going to laugh about this because you know what we feed her. Lilli finally told me tonight what she thinks of her food.

This process of getting to know the details about Lilli through typing is slow. Now that she is typing short sentences, I am just bursting with questions. I can't ask her hundreds of questions every day, that would annoy her. But I have a long mental waiting list. I wait for the right times to ask her certain things. It's probably good practice for when my kids are teenagers someday, right?

I have to explain to any new readers that Lilli has been non verbal and only recently started to learn to type to communicate. I had to look back at my posts and check. Yes, she has only been typing to us for a month. One month. It is crazy! She has gone from typing "yes" and "no" at the beginning of December to short sentences at the end of the month. I cannot explain it. Well, I can, it's truly a gift from God. Her homebound teacher told me she was amazed at how much her typing progressed over Christmas break. She had expected Lilli to be like most kids, who need to ease back into school in January and refresh their memories. But Lilli typed with us a lot over break. She typed with her ABA therapist, who came almost every day. She even typed with my mother in law who came for Christmas. The teacher told me she was almost brought to tears because it was so incredible her first day back, typing with Lilli.

I recently started giving her more choices about things, giving her another opportunity to type. Choices about movies and what to wear are great. But food? We don't usually give Lilli a choice about food. She has been on the "Specifiic Carbohydrate Diet" for four years now to help control her seizures. It has also earned a reputation for helping kids with autism. We feed her the (very healthy) foods according to the diet and she eats them. She rarely complains. A few weeks ago I tried spaghetti squash instead of butternut squash and she was not happy about that. But overall, she eats well. Possibly better than any typical seven year old in America, I would venture to say. No candy, no junkfood. Everything is home-made and organic. She doesn't drink anything but water. Her dentist just loves us.

Last night I asked her if she wanted green beans or broccoli for dinner. I figured, why not? I gave five year old Chloe the same choice. I should give Lilli a choice too. I typed both words on the ipad so she could see how to spell them. She typed "gr." I helped her type the rest of the words "green beans." I was happy to know what she preferred. This is all so new.

Tonight I asked her the same question, and typed the words again for her to see. She typed "bro" and stopped, so I helped her type the entire word "broccoli." Wow, this is good for her, I thought. I should give her more choices. So I asked her if she wanted chicken or meatloaf for dinner.

That's when she blew me away. She typed "hate ch."


You hate chicken? I am still getting used to this little girl of mine, who has been unable to speak, typing such a strong word as "hate." Is this how a typical almost-eight year old talks to her momma? I guess it is. I know I don't write enough about everything that is happening because I have not yet explained how Lilli has typed to me she that "hates" certain things. What a sassy personality she has, with strong opinions emerging everyday through her typing! I laughed, because she gets chicken every day. I do not blame her! Ok it is organic, roasted chicken with broth and organic onion. But even though it is healthy, it is boring. So I guess she hates it!

Our "conversations" are interesting because they are not always spelled right, and most of the words are unfinished. But I piece it together. If I am confused, I ask more questions. I press her to type more letters or words. But this time, I kind of knew what she was going to say. I figured it had to do with what her sister and brother were already eating at the moment. I asked her what would she like to have for dinner? She typed "we." It might have been a stretch but I said, "do you mean you want to have what "we" all are having?


She is definitely a corner-cutter. She knows how to spell yes and no, but she types "Y" or "N" often. Again, can you blame her? All of us, who type "u" for the word "you" when texting, certainly can't pick a bone with Lilli about her shortcuts.

The other two kids were already at the table, eating chicken nuggets. I sighed and picked up the box. They are Applegate Farms gluten-free chicken nuggets. Would it be that bad to let her have what the others are having? I read the ingredients. She is not supposed to have them. But compared to a lot of things, they are not bad. She steals them anyway off her siblings' plates. So instead of her stealing them, I would just be putting a few on a plate in front of her and giving her the green light.

I made five nuggets in the toaster oven. But I took only four out and put them on a plate. I hesitated, took out the fifth, and then put it back in the toaster oven. Maybe I would give that one to Josh. Five seemed like a lot for her first-ever, off limits chicken nugget meal. Please understand I am not a mean mommy, I just know that the diet has helped her health immensely and we really stick to it. She was failure to thrive years ago, not gaining weight, gastrointestinal issues. She has come so far. This was a big deal for both of us.

"You still have to eat your vegetables, Lilli!" I said, pointing my finger at her. She silently chewed on a spoon she had swiped out of the make-shift utensil holder-vase, and looked away. (Moved the silverware out of the silverware drawer to prevent the swiping. Not working.)

She seemed a little stunned when I set the little plate down in front of her at the table. Maybe she didn't think I was actually going to give them to her. They are off limits, and I was actually giving her a PLATE of them! She started to eat one, and stopped. I asked her why she wasn't eating them. She typed "because c."

"Because they are cold?" I guessed.


Oh this strong, smart little girl that is coming out. She has an opinion like everyone else, but just could never voice it before. Ok, I picked up the plate and went to go heat them up. After they were warm, she dug in. She ate every bite. I fed her butternut squash and steamed broccoli. I snuck a few bites of her special meatloaf in there too. Then I asked her what she thought of the nuggets. I suggested she could type, "good" or "yummy" or maybe "I liked them." I was really looking forward to seeing what she would say. Her finger tapped out,

"Can I hv"

"have? Are you asking if you can have more, Lilli?"


How could I say no? It's a miracle, she is trying to type can I have more. I stood up and got the fifth chicken nugget for her. (But I reheated it first, per her preference.)

I see new recipes for Specific Carbohydrate Diet chicken nuggets in my future. If anyone knows of a good one, please post it in the comments section! I need to expand her diet to more "kid friendly" meals.

Just before bed, I said, "Lilli, tell Daddy what you thought of those chicken nuggets for dinner tonight!" She giggled and put her hand on her nose. I took her hand in mine and she typed

"Very g."

You guess what that meant.

Tuesday, January 3, 2012

My Mistake

Some people don't like to admit their parenting mistakes publicly. But I confess them here hoping that a parent somewhere in the world will identify with me. Maybe it will make someone feel better, knowing that we all make mistakes when we parent our children. It's realistic, and it's good to know that we are not alone. My mistake tonight was seemingly small, yet revealed to me five years worth of unknowingly making the same mistake over and over. It was a personal, parenting revelation, and not a very good one.

A friend dropped by with a bag of Christmas presents for the kids. I held Lilli in my lap and took her hands in mine, and made her open the gifts. I didn't "help her." I made her. That's autism. Merry Christmas, I hate opening this gift. But I know Lilli. I know I have to take her hands and make them do things over and over for her to learn how to do them on her own. She cannot open her own gifts yet. It is hard for her and she does not want to do it. But that does not mean that she doesn't want what's inside.

The gift was a small purple snow globe. A figure of Cinderella stood inside the glass as glitter swirled around her. Lilli looked directly at it; a good sign of a good gift. She touched it a few times, then squirmed out of my lap. So here is the tricky part. The trap I have obviously fallen into for years and never realized it. Chloe said with big eyes, "I love that Cinderella snow globe! Is that Lilli's? Can we share it?" And I, while scrunching up the pieces of ripped wrapping paper, absentmindedly responded, "What? Oh, share it? Yeah, I guess you can share it."

Chloe proceeded to tear into her own gift, a Belle doll (which she did not offer to share with Lilli). Chloe is the middle child, but she is kind of a "stand-in oldest child" since Lilli has been unable to talk. Lilli's autism keeps her outward actions from revealing her true feelings, which complicates everything. Chloe is used to doing all the talking, and having reign over all the toys in the house. She does not know what it's really like to have an older sister. Chloe is confused by the fact that Lilli is the oldest, yet she is years behind Chloe in many areas. She can be bossy, and she takes over Lilli like she takes over Josh, who is not quite two.

Lilli started doing her half cry-half whine, which has always in the past turned into the "Guessing Game" until we figured out what she wanted. But not anymore. Not since she started typing words on the ipad. She cannot spell everything yet so there is still an element of guesswork. However, the ipad was not right there, and old habits die hard. My husband ventured the first guess: "She wants to watch a movie."

"No, that's not it," I said, but I wasn't sure what it was. I thought she was mad because we were all talking and making noise. She gets overwhelmed sometimes by too much talking. I took her hand and led her into the next room, with the ipad. I stood behind her and put the ipad in front of us. "Tell me," I said. "Type what is wrong. Use words and type instead of whining."

She fought me. She whined and tried to leave the room. But I kept bringing her back to the ipad and asking her to type it instead of crying. Finally, I got this:

"Because you told"

And that was all I got. She either did not know how to spell the next part, or she did not want to type it for some reason. I asked questions. Had I said something that made her mad or embarrassed? Was it about the presents? I was stumped. Then she finally typed "mad." I went out in the living room and told my husband and his friend Ryan that I could not figure out what had just happened. It was Ryan who solved the mystery. "Was it because you told Chloe she could share the snowglobe with Lilli?"


I went back in and asked Lilli. Yes indeed, that was why she was mad. I explained to both girls that we share our things and take turns, but that certain things belong to others and we have to ask for permission. I put the snowglobe on a shelf above Lilli's dresser and told Chloe that she could see it, but she had to ask Lilli first because it's Lilli's snowglobe.

I had never done that before. Lilli is almost eight! Then I looked at Lilli and said "Is that better? Are you OK with that?" She leaned in and gave me a kiss and a smile.

My five year mistake was revealed. Chloe is five. I assumed Lilli didn't care about all the times when Chloe just took Lilli's toys and ran off with them. Lilli never acted like she minded. Lilli has a shelf full of stuffed animals that are "hers" but she does not even play with them. How could I ever know that she was territorial about her things when she hardly paid attention to them? Later I asked her if she felt that way often about Chloe playing with her things without asking. She typed "yes" right away. No doubt about it. I had never laid down rules or set up boundaries, because Lilli was never a kid who put up a fight or complained when her little sister took her stuff.

Lilli typing on the ipad is a bit like tearing open that present, one tiny rip at a time. It takes a long time, and we have to make Lilli do it. She didn't want to open that present, but she wanted the snowglobe inside. She doesn't want to type, but she wants to tell us what is inside her mind. We have to learn to give Lilli the opportunity to tell us things. Lilli has to get in the habit of typing her thoughts instead of crying in frustration. I have to digest the many realizations that occur each time we have an experience like this, and change the way I think and do things.

The first thing I did to make a change tonight was to put the snowglobe up on Lilli's shelf and lay down rules for Chloe. Tomorrow I will go into Chloe's room and take a good look around. Sharing is a wonderful thing for siblings to learn, but so is respect for others' belongings. Tonight I learned that in addition to sharing, I need to teach my children to respect things that belong to others, especially when that person cannot talk or voice their opinion. As a mom of a child with special needs, once again I am reminded that I am Lilli's best advocate and defender. Even to her own siblings.