“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
salt
olive oil & butter - 2 tbsp each

Directions:
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.





 

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.


 

“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."

What?!

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?

"Y"

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.

"Y"

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?"

"Yes"

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.

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?"

Hmm.

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.