Five Minutes on Saturday

Sometimes, just one simple everyday moment in time can completely rock my world, and give me new perspective.

That happened to me last Saturday, simply because I met someone and spent five minutes with her. Five minutes that I will probably think about for the rest of my life.

The day before, on Friday, I had a moment with Lilli that I rarely get. Lilli still takes a nap every day. She gets tired out. She's almost ten, but something about her neurologically - maybe the seizures - maybe the brain damage - she still must take a fifteen to thirty minute nap every day. And almost every day, she naps in her special needs carseat while we are driving to pick up Chloe from school.

But Friday was different. Jasen had the day off, and he went to pick up Chloe. Josh had fallen asleep on the floor in front of a Batman cartoon. So I decided I would just try and lay down with Lilli to get her to take a short nap. We snuggled together, and she fell asleep.

Years of interrupted sleep since Lilli was born has wrecked my ability to nap. I have a lot of trouble sleeping. But I didn't mind the quiet time to lay next to her, thinking. It was so sweet, this moment with my daughter. I spend a lot of time helping, dressing, feeding, bathing, coordinating her school and therapy schedules and goals. Then there's Josh and Chloe, who need attention too. But I rarely get to have a quiet time with Lilli, where I lay down and take a nap with her in the middle of the afternoon. (Any mom will agree that it's a miracle to have all of your children nap at once.) I thought, wow, I wonder if I will still be taking naps with Lilli many years from now, when Josh and Chloe are older and are both at school all day.

Then I thought, I wonder how many other moms of nine year olds can do this? 

I hugged sweet Lilli, listened to her soft breathing, and I felt blessed.

The next day, Saturday, I met a girl. The girl I will be thinking about for a long time.

I had heard about her for several months, but I had never met her in person.

A friend stopped by to pick something up. She had this girl with her because she helps provide care for her on the weekends. I went out to the van, because I really wanted to meet this girl that I had heard so much about.

I went up to the window of the van, and introduced myself. I won't tell you her name. She is a twenty five year old girl who has autism. She is non verbal. She has no way to communicate. She cannot be left alone. She needs a lot of care.

She was silently sitting in the back seat of the van, looking down at her hands. I said hello to her though the window, and she looked up at me. Her clear blue, beautiful eyes looked directly into mine.

"I've heard a lot about you, lots of good things," I said. "It's so nice to finally meet you."

She was silent. I smiled at her. "How old are you?"

Some long-time readers will remember an old post of mine about talking to a person with disabilitites. (If you missed it you can read it here.) I knew that this girl could not speak. But she deserves to be spoken to. Everyone does. We talk to infants. We talk to cats and dogs. Some of us even talk to plants. I catch myself talking to toys on the floor, although it's not always nice words. If we talk to animals and objects, how can we ever ignore a person with a disability? It's a person. I know it's hard to know what to do when you see people in wheelchairs, people with missing limbs or people with mental challenges. This is what you do: smile, look them in the eyes, and say hello. That's all.

She reached out through the window and touched me.

I waited a few beats, and then asked my friend how old she is.

Twenty five.

This is what hit my heart: She's an older version of my Lilli. Sixteen years from now. Maybe.

Maybe Lilli will speak words one day. You know that is my biggest prayer for her. But maybe she won't, and that's okay.

I felt the urge to hang out with this girl. I wanted to paint her nails and read her a cool book. I looked at her and saw what looks very much like my future daughter.

And I felt overwhelmingly blessed.

The next morning, we went to church, and part of the message was about joy. That as we take communion, part of it is to remember that God wants to give us true joy in our lives. As we took communion together, tears ran down my face as I thought about how my life has not turned out at all the way I expected. We've missed a lot. My high school reunion is coming up. I cannot even consider it. I have missed weddings of dear friends. I have missed holding their new babies. We have missed trips and vacations. We might always struggle to find people to watch Lilli so we can simply go on a date. We might always struggle financially to live on one income so I can stay home with Lilli and provide for her needs.

But I am seeing that God's plans for my life were greater than any idea I ever imagined. And the blessings far outweigh the things we have missed.

When I was twenty-four with a fresh new teaching career, I never dreamed I would one day resign, because I have a child with special needs who I will likely be caring for full-time for the rest of my life. Some might see it as a burden. I cannot explain it well enough in words. And even when I say this, some will not understand or see it.

But it is not a burden.

It is an incredible blessing, and a privilige. A gift from God. A glimpse of Him. A tiny piece of an idea of heaven.

Even if that does not make any sense to you, I had to try and put it into words somehow.

It's true, I do have some very difficult, discouraging moments. It's hard. Very hard.

But it's a blessing. It is a joy. True joy is not always for happy times. Sometimes joy is most precious in the hardest times. When a person can go through a dark time and still know that God is with them, that God has plans for them, that God knows the future and it is all going to work out for our good, that is real joy.

I'm blessed that God had better plans for me than I could ever imagine. And I'm blessed to have met a future version of Lilli, so that I could have a glimpse of my own heart. I realize that I am not dreading the future. I am not afraid. I am not depressed. I am blessed. I have a purpose.

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

Learning to Use a Voice

It is something we all have to do at some point in life. Literally, and figuratively. Actually, it might be more accurate to say that we have to do this at many different times throughout our lives. We have to learn that God gave us a voice, and we should use it. How we use it is the big question.

I was reminded last week about my own - figurative - voice. Here I spend all this time talking about Lilli's voice, and how she can't verbally talk but she has a "voice," and how we are trying to help her use it. I am  passionate about explaining to others, in writing and in person, how Lilli has an opinion and wants to be heard even though she is not verbal. I want teachers and therapists everywhere to look at non verbal children in this way. Lilli definitely has a strong "voice."

I honestly have not given much thought to my own voice.

I guess I felt a little like I was yelling down a dark tunnel, thinking it was empty. Or maybe just full of spam. (Other bloggers will get that.) But I continue to yell because I need to get it all out. I did not know just how many people were listening on the other end. Maybe I will never know about all of them. But it does not matter. There are people listening.

It was so good to be reminded. I had a very humbling, precious moment where I felt a little like George Bailey in "It's a Wonderful Life," only...it wasn't Christmas, and it had nothing to do with money, and I wasn't really questioning my existence...okay I guess it's not the greatest illustration. I thought of the movie because I think the best part is at the end, when George realizes that he has touched many other people's lives and never even knew it.  There is just nothing to say in a moment like that. You just take it all in and wonder at it all, how God brings people together through hundreds of seemingly random, different circumstances. But nothing is random. And I do not believe in coincidences. If only we all took more time each day to tell other people how they have made a difference in our lives. Even if it is small. How encouraged we would all be.

I have been writing this blog for a few years now, and I feel very blessed to hear from people I had no idea were reading this. I loved every comment on this blog and on Facebook. I received two phone calls from long-distance friends I had not spoken to in years. They called to tell me that they have been reading all along. I just did not know, that's all. I was very surprised, and more encouraged than I have felt in a long time. So thank you, to everyone who took the time to comment or call. It was a gift to me.

I have been thinking about my voice in our community and specifically in our church. Most times, I feel very small and insignificant, and mostly just plain old tired. I often wish that other people would advocate for families with children who have special needs. Meaning, people who don't have children with special needs, people who get a full night's sleep and lead more of a "normal" life. (There's my least favorite word again.) But it seems to be true that when a person feels passionate about something, that person is the one who can make the most difference. Our pastor says that when God puts something on your heart, He means for YOU to go and do it - not to go and tell someone else that "they ought to do something about it." Don't call the church and say that "they ought to take care of that situation." If it is on your heart, it is there for a reason, because you are that person who is supposed to do something about it.

See, I just sighed out loud to myself in this early morning dark kitchen.

Because I know that I have to go and do something. I have to go and do something that will be hard, but I can't not do it. I'll bet you squirmed a little or maybe sighed to yourself too when you read that. If you did, it's because you probably have something that bothers you too, and you wish somebody would just DO something about it. But you know that person is probably going to end up being you. Sorry to tell you that.


I will write about what I have to do another day. Today I want to end with this video clip of Lilli, who is learning to use her "out loud" voice. I believe that after you watch it, you will feel blessed in some way. This girl wants so desperately to speak, and it is incredibly difficult for her. Would you please watch this video, and say a prayer for Lilli, as she is trying so hard to practice and make these sounds and words come out? Here is the Youtube link in case it does not show up on your browser: http://www.youtube.com/watch?v=DFyeWo5SyhA

Thank you for reading. I will keep writing. I will keep telling my stories. I will tell stories about others as well. I hope it continues to encourage, enlighten, and bless everyone.

Morgan is trying to get Lilli to make the sounds "guh" for the letter G, say the word "me" and the sound "ticka ticka" for the word "tickle." Lilli says these sounds on her own so this is why we chose them, but she has trouble making the sounds come out "on command." This is due to speech apraxia. She is physically able to do it but has to work hard and really concentrate to do when when Morgan asks her. She is also a little distracted by me and camera shy. (Josh is climbing up the climbing wall making noise next to me while I'm trying to record.) She makes all the sounds Morgan asks, but softly, so you might need to turn up your volume. 

A Simple Yes or No

I needed a clear way to know what Lilli wanted or needed, without the ipad. Just a simple “Yes” or “No.”

Shopping trips have always been difficult, even typing with an ipad. This is one of the best, solid communication methods I have ever found with Lilli. Why did it take so many years for me to think this up?

Here it is, nothing fancy:  The Yes No Velcro cards  - in a purple purse.  

Lilli’s Little Purple Plastic Purse. We love that book.

The purse part is important. Lilli is eight, and fashion is important to an eight year old. It makes her feel like a big girl, and encourages more independence. Plus, it’s cute. (And it was only a dollar at a yard sale.)

She can’t carry the purse herself yet, but maybe one day she will. We could get a bigger strap and put it on her shoulder. For now we just carry it for her and leave it in her sight. When we want to ask Lilli a question, we pull the cards out for her. 

The Problem with Other Yes and No Methods:

Pointing - We tried having her point at the words Yes and No. But lots of people with autism have trouble with pointing. Lilli has worked on pointing at things she touches for years. It is still hard for her. She never, ever points at something in the air or someone across the room. Touch is important. It works in specific situations: if I hold out two objects and say “which one do you want?” she can touch or grab the object. But she rarely point-touches, it is usually more of a whole hand tap or grab. And it does not work for everything.  Pointing is not always accurate either. She can aim to point at something and go off to the side. Or in the middle between two pictures, for example.  All of this is confusing to me about Lilli, because she can do some things like Starfall.com on a touchscreen. But she needs guidance with typing. I do not know why there is a discrepancy, I just know that she finds it easier to reach out and grab something as opposed to touching it with her pointer finger.

Vision can also be a problem. We are still unsure of Lilli’s exact vision issues. She uses peripheral vision often. Side glances are more prominent than direct eye contact. If we put two pictures next to each other but space them far apart for easier aim in pointing/touching, we can’t tell if both cards are within her field of vision.

Signing  - We have been working on signing “yes” and “no” for years, but it is not consistent. Most importantly, Lilli has trouble signing with people she does not know, and signing in situations where there is pressure or she is overstimulated. For example, at the mall with music playing and lots of people around.

Nodding - Lilli cannot nod her head yes or shake her head no, to answer a question. She is physically able to move her head, but not on command. It’s an autism thing.

These are all methods that we take for granted every day. How many ways can you express “Yes” or “No” to others? We have many choices, but Lilli has very few. Lilli had done well with Velcro pictures in the past, and now we know that she can read. So the YES NO Velcro cards were born. Simple, clear, and concise. I ask her the question, and hold out the cards. She pulls off the “Yes” or the “No,” and hands it to me. I LOVE Velcro. (so does Lilli.)

This simple method has been very helpful and accurate. And it WORKS for us. I hope this idea will help someone else who has a similar issue.

These are our rules:

1. Always put YES on the left. At one point, we were switching the cards around each time, to make sure she was looking at them before she answered. Sometimes YES would be on the left, and sometimes it would be on the right. This came from the idea that we needed to “test” Lilli and make SURE she was paying attention to the cards. Then I realized, this is not fair. When you ask someone a question with a yes or no answer, do you say, “Do you want a slice of pie? No or yes?” Most people would say, “Yes or no?” Yes always comes first. Another reason: we all do things with muscle memory. When we type, we don’t look at the keyboard all the time (if we know how to type, that is.) Our fingers just know where to go. The letters are not “switched on us.” When we drive, (if we are experienced drivers) we don’t look down at our hands and concentrate on every move they make. Some people can text without looking. I cannot do this, but I have an old flip phone and I am old fashioned. (Or just old.) So when Lilli does things, she sometimes uses muscle memory too. She reaches for the one on the left, or the one on the right. So they always have to be the same. Make sense?

2. Do not use the YES NO cards to test Lilli with silly, test-like questions that insult her intelligence. She is smart! If we ask her something stupid like, “Are you a girl?” trying to see if she understands, she will get mad and either not answer, or take both cards off and throw them on the floor. We only use the YES NO cards to ask her conversational, everyday questions that we do NOT know the answer to. Otherwise, we would not ask her, silly! So for example, I ask her “Do you want mustard on your sandwich?” “Do you have to use the bathroom?”  This helps me to know what she wants, and it helps me to include her. I enjoy being able to ask her something like, “Do you like this song?” Or, “Do you like this bracelet?” These little questions help connect one person to another.

3. Use the cards all the time, about everything. Lilli wants to have a “say” in the choices in her life. We took the purse with her to church, and the volunteers taught her a Sunday school lesson and asked her questions. We took the purse to occupational therapy, and the therapist used the cards to ask her if she wanted to go on the swing during therapy.  I use the cards to ask her about food choices, play choices, bathroom, fashion, books we are reading, and her opinions on things. Lilli has shown us over and over that she completely understands, and she has her own opinions and preferences.  We are beginning to use the cards when shopping, and it has proven to be the clearest, easiest way to know what she wants and does not want. Is it 100% accurate? I guess I have no way of proving it. But today when I asked Lilli if she wanted tomatoes on her sandwich, she told me yes. So she got tomatoes.  Almost every time I have asked her if she had to go to the bathroom and she used the cards to say “Yes,” I have taken her and she DID go. Answering yes or no often has direct immediate consequences. I think it is a super skill to work on with a child who has no “voice.” So even if it is not 100% all the time, it is easy, fast, and better than anything else we’ve got going on here.

We also put the potty button into the purple purse. The portable potty button is concealed in a zipper change purse. I sewed a ribbon onto it so she can wear it, but since we got the purple purse she does not wear the potty button. We put the purple purse where she can see it, and she has gone over to it and pushed on the purse with the potty button inside. In case you missed my post about the potty button, it is a rigged recordable picture frame that says "I have to go potty" when pushed. 

So now we have a purse for a non-verbal, fashionable girl with the ability to communicate “Yes,” “No,” and “potty.”

My niece sent the change purse that I used for the potty button camouflage. I used a ribbon I already had and sewed on a strap. The card for the back of the YES NO cards is cut out of a piece of a plastic school folder that I picked up at Office Max.  I printed out the words “Yes” and “No” at home and had them laminated, but they can be mounted on cereal box cardboard and covered with clear packing tape – we do that a lot to avoid a trip to the office store. So it was very inexpensive.

So simple, cheap, yet so valuable. If you know someone who is non-verbal, will you please share this idea? I can’t keep this to myself. I know there are other non-verbal children or even adults out there who might be able to use this simple method.

So what do you think? Do you like this idea? Yes…or No?

 

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

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.