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


  1. All I can say is "wow!" Way to go Lilli!

  2. Awesome! I am astounded. You tell Lilli that we Do believe in her! She just blows my mind.

  3. Jennie.... I am utterly amazed! What a blog.

    Several times as I was reading I thought - God in his wisdom, gave Lilli you as a mom. I can just imagine how fantastic you are (even though we dont much feel like it when we are sleep deprived) God bless you and keep you and give you stamina for this journey. Lots of love, from me, Ruth, Gracie and Jack!