Tuesday, December 27, 2011

Our Crazy Christmas Tree Story

Three years ago, we did not have a Christmas tree. I mean, we spent Christmas without one. In our own house.

We didn't go away on vacation and just decide not to put one up. It wasn't that we didn't have the money to buy one, either. It was strange that year, but surprisingly meaningful. I am a traditional, sentimental girl, but it is true: you really do not need a Christmas tree to celebrate the birth of Jesus Christ. We actually did have an artificial tree, and then we got rid of it a few weeks before Christmas. But we didn't do it to make a statement.

We went tree-less because Lilli had a seizure as soon as we put up the Christmas tree that year.

We had noticed that Lilli's seizures got worse in the month of December. Over the years we have tried to unravel the mystery of triggers and Lilli's seizure disorder. We have completely changed or cut out many things as we have pieced together what seems to set off her seizures. The list is rather long, odd, and perhaps some things on the list are not even related. But when your baby has seizures, and the meds are not working, you go a bit off the deep end trying to figure out how to stop them.

Within an hour of putting up the tree and seizure activity, I said to my husband incredulously, "This sounds so crazy, but do you think it could be the tree?" He said he had been thinking the same thing. We did some research and found that it was very possible. Our tree was stored in a box in the dirt crawlspace, and who knows if dirt on the box, or maybe mold, or just the dust on the tree was a problem for her. Then we read that lead dust could be the big culprit. Wow, who wants to celebrate Christmas by breathing in a little lead dust? There are studies and articles about it. Is it really so far-fetched to believe that trees made in China might actually have lead dust on them? After all the toys that were recalled for lead paint, it seemed plausible.

We took the tree back down the same day and got rid it completely, a few weeks before Christmas. We didn't care if it was the tree or the box. If it had anything to do with Lilli having seizures, we didn't want it anymore. I draped lights and ornaments all around the living room and kitchen, hoping for a seizure-free Christmas that year.

The following year, I drove myself crazy thinking about what to do for a Christmas tree. I learned that it was possible to celebrate Christmas without a tree. But I really wanted one. For all of us. As the kids got older, they would start asking "Why do we hang our ornaments from the entertainment center, Mommy? Can't we just get a tree like everyone else?" I had to think of something.

Since artificial trees were out of the question, I researched real trees. Another problem. Pollen, dust, and possible mold from wet, real trees could be an issue for sensitive ones. I needed to find a cheap tree that was…washable? I began to brainstorm. I scoured the internet looking for ideas…checked a stack of Christmas craft books out of the local library…looked on ebay and many websites. I looked at different plants, and considered decorating a potted palm tree or a ficus tree. The problem was, we did not have a palm tree or a ficus tree. We had recently moved and Jasen was taking classes. We were on a student loan budget, and the "new" tree had to be dirt cheap.

I concluded that my choices were to make a tree out of either fabric, hundreds of safety pins and beads, or a big branch from the woods.

The choices were not that great.

I went with the big stick from the woods idea.

I thought if I could find a big branch, paint it and stick it in a pot somehow, I could drape lights and ornaments all over it and… voila! A Christmas tree! I am not very crafty. Also, this was not a step by step idea from someone's craft blog, or anything like that. I wasn't exactly sure how I would make a huge branch stick up out of a pot and look like a Christmas tree. But I was determined.

I searched for a week for the perfect branch. Every time I asked Jasen to go look in the woods for me for a huge "Christmas tree-like branch" he shook his head like I was nuts and went back to studying. It really was quite a ridiculous idea. The low point was when I pulled over to the side of the road after dropping both girls off at school, and tried with all my might to yank a huge branch out of a ditch. It might have even been a small dead tree. That was when I had the "what the heck am I doing?" moment. I got in the car – without the branch – and prayed. I sat in my car and said, "Lord would you please solve my Christmas tree problem?" I asked God to help me figure it out, so that we could decorate a "tree" as a family and avoid the fake lead dust evergreen problem for Lilli.

God cares about little things. I don't feel at all silly asking Him for a Christmas tree. I figured, if God thinks I really should have one, He'll give one to me. When you learn to depend on God to bring your child through the night at the hospital, and you learn to depend on God to provide income to pay the bills and put food on the table, you learn to depend on Him for small things too. A pair of shoes. A winter coat. Diapers. Once I prayed that someone would come along and help me put Lilli's stroller in the trunk because my back was hurting and I absolutely could not lift it. I turned around and there were two people that gladly helped me. I have learned over the years to ask God for things I need, but also for things I would like to have for my children. God is a much better parent than I ever could be. He wants us to depend on him and trust him to take care of things. And…He is a great gift giver. So I asked him for a cheap, washable Christmas tree.

I did not even have to wait a week.

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Our $5 tree. Baby gated every year...sigh.
Three days later on a Saturday morning, we looked out the kitchen window and saw a yard sale going on in the next neighborhood. We live on a hill, and could see people carrying things off to their cars in the December cold. Who has a yard sale in December? The yard sale addict that I am, I hopped in the car immediately and drove over there. As I walked up the driveway, I spied a pre-lit, outdoor spiral Christmas tree. I got it - like new, in the box – for five bucks. It looked like a Macy's department store ornament display in our living room. It was kinda funky. I wiped it down with unscented baby wipes and carefully wiped off every ornament before we hung it up.

The following year, last year, I found our current Christmas tree at a church yard sale. A pre-lit twig tree, new in the unopened box, for ten dollars. I wish I could tell you that ever since that 2008 Christmas when we got rid of the "evergreen look," Lilli did not have any more seizures in the month of December. But that did not happen. We could not control all the other places she went that had dusty decorations. Everywhere she went – school, church, every store, friends' houses, all had Christmas trees up. She still had seizures. There were other factors too, of course.

Last year, we stopped taking her to church while the decorations were up. The previous year on one Sunday, she had a seizure in the middle of the service and we had to leave. There were three huge trees and a ventless fireplace set up outside her classroom as decorations. Each time something like that would happen, we would scratch our heads and say, "Could it really be the decorations?" What about the flashing lights, someone suggested to me. We do not flash our Christmas lights. Why would anyone do such a thing? Ok sorry, I know someone out there likes it. But we don't.

Every year, we hope and pray for a seizure-free Christmas. I go to great lengths to make sure it is a clean, dust-free Christmas. I wipe all the ornaments and the tree, and I hand wash all the stockings and drip dry them. Some of our decorations stay in the attic. If I can't figure out how to clean it, it does not come out. I do not burn candles. We run air purifiers and we are careful about what we can control. But we can't control everything.

This December, unlike last year, she did not go to school because she is medically homebound. She did not go anywhere except for a few shopping trips. She's had two seizures this whole month, and that's better than any other December we've had.

We have all enjoyed our crazy Christmas tree. Chloe has still not asked me why it isn't green. I am thrilled that we have made it almost to the end of the month with only two seizures. I think it will be our best December yet.

I pray that it is.
Last year. The gate comes down for Christmas morning only.
You can see one lower branch already has been mangled.
The Christmas train is taking a nap.


Sunday, December 25, 2011

Can’t Wait for Christmas

I love it when friends and family visit who have not been here in awhile. I love how they comment on my kids; how they have grown, what is different about each of them. It's fun because when you are with a child every day, you don't see them growing. You notice changes but not as clearly as someone who hasn't been around in a few months.

My in laws are visiting for Christmas. I love how they point out the changes they see in their grandchildren since their last visit. I really love what they notice about Lilli. Tonight my mother in law told me Lilli seems more content. Much happier. She is also more aware and connected with what is going on around her.

The ipad is helping to bridge a gap that has been there all of her life.

This year there have been many changes in Lilli compared to last year. Some are small, subtle changes. But to me, they are huge. Each year, we make a gingerbread house. Chloe helps me with the whole thing. Last year we took Lilli's hand and helped her put one - one M&M on the house, and she did not enjoy that at all. She squirmed away immediately. No interest whatsoever.

This year, the therapist and I both talked to Lilli about decorating the house, typed about it, and looked at pictures of gingerbread houses. She really focused on it. She picked up each piece of candy and carefully put it on the roof. She took her finger and pushed it into the icing on her own. I think she must have put at least six pieces on the house.

If you are shaking your head right now, I understand why. Ok, one piece, six pieces, wow. But for Lilli, that is huge. She cared. She was interested. It was a change from last year. I absolutely live for those moments of interaction with her. This year she "helped" wrap a few gifts. She chose what she wanted to give people by pointing. She helped me type sweet messages to her therapist and her teacher. Tonight she paid attention when she opened one gift. She helped put a carrot out for the reindeer. We typed "reindeer" together on the ipad.

This year is particularly special. This year I will get to ask her what she thinks of her gifts, and she will be able to tell me. We will teach her how to spell the names of the toys she gets, and we will type about them.

I can't wait for Christmas because of that. I am so excited about all of my children and the look in their eyes when they wake up in the morning. But I am really looking forward to those peaceful moments later in the day when I can ask Lilli which was her favorite gift.

Her answer, no matter what it is, will be a gift to me. I can't wait.

Wednesday, December 21, 2011

When Autism Gets in the Way

I shake my head when I think of the irony. Here I am, ecstatic about being able to communicate with Lilli on a deeper level through her ipad! But I am frustrated by her autism getting in the way. She can type. She can spell a lot of words now. It is so amazing. But is she sitting down to type and spill her guts to me and tell me everything she ever wanted to say?


We have to make her.

This morning I tapped on Proloquo2go, her communication app, to ask her something. She got mad and clicked out of it, and quickly opened Youtube.

I clicked out of Youtube and said, "Hold on Lilli, I want to talk to you about something. You can watch Sesame Street in a minute if you answer me first."

She got mad and jerked her hand out of my hand and turned her body away from me.

When I persisted, she relented, and typed "Yes" in response to my first question. Then before I could finish my next question, her little hand flew over to the button to click out of Proloquo2go and get back onto Youtube again.

I just am having a little trouble understanding why she wouldn't want to just sit down and type all the time now. I wish she would! I have so many, many things I want to ask her. It feels like we are getting to know her in a whole new way.

But it has to come in small spurts. She has to be in the right mood, with few distractions and interruptions. She has to be motivated to tell us something. If it has to do with food, she will type. If I ask her if she wants to watch a movie, she will type. If she is really mad about something, she will type.

Many times I have to sit with her in my lap and hug her tight while I ask her something. She struggles to get away because she wants to do her own thing. She wants to play with a toy or watch a movie. She does not want to sit down and have a conversation with her mother about what makes her tick. She would much rather watch Elmo on Youtube than tell me what she likes about Christmas.

There are rare moments when I have caught her at just the right time. The other night it was close to bedtime and quiet. I sat with her and asked her a few questions. One thing I asked her was what makes her feel scared. She answered "hospital." She had the spelling close enough for me to guess. I spelled it correctly to show her and asked her if that was what she meant to type. She typed "yes."

That made my heart hurt. I guess I was hoping she would not remember all of those scary trips to the ER. But obviously, she does.

I did not expect that answer. I really had no idea what she would tell me. I thought she might answer that she was afraid of the dark, or of loud noises, or maybe falling. When she told me she is scared of the hospital, I again had a feeling of awe. It is just such a miracle that she can tell me something she could never tell me before.

Think of all of the people in the world who cannot speak. Think of all of the other people who have treated them as if they were unintelligent or clueless all of their lives. Body language does not always tell the truth about someone. I believe it is best to treat all people as if they understand what is going on. Talk to them as if they could answer. Explain things to them as you would anyone else. Just because someone cannot speak does not mean they cannot think or understand. Why do we assume that speech is always equal to intelligence? In the case of autism, there is just no way to tell for sure. Autism is a mystery. It takes things that seem simple and turns them into great challenges.

A miraculous door has been opened for us through Proloquo2go on the ipad. But we have to make Lilli walk through it.

I believe Lilli wants to communicate with us, wants to tell us who she is and what she thinks.

But her autism gets in the way.

Saturday, December 10, 2011

Awareness, the Nutcracker, and Guilt

Lilli seems more aware to us lately, and I have been pondering this.

She might not really have changed at all, but how we are treating her is changing. Slightly. We have always hoped she knew and understood everything that is going on, but never really knew for sure. We have always talked to her as if she understood. We have treated her as if she understood, for the most part. But now that I know for sure that she knows what is going on around her, I am a little more careful about what I say and do.

It's the little things. For example, do I explain to Lilli that I am going to go to the grocery store to get milk and I'll be back in a half- hour? Or do I just tell the nurse and leave because Lilli acts outwardly like she doesn't care what my plans are? Do I ask her what she wants to wear? Does she care? Or do I just choose an outfit and put it on her?

Body language is one of the toughest things about autism, if you ask me. We think someone is listening, or not listening to us, based on how their body acts. In addition, we wait for an appropriate verbal response such as "Okay Mommy, I'll see you later." I always know when my husband is not listening to me, even though he says he is. I catch him every time and quiz him on what I just said. Who doesn't do that? But with Lilli, she almost always acts like she is not listening. She does not always look at me directly or even stand still with her body facing me while I tell her something. There is no verbal response. Many times there is a hug or a kiss, which might mean, "Okay, I understand," or… it might just mean I'm standing there and she loves me, so she's giving me a hug and a kiss unrelated to what I just said. The rare times that she does look right at me and stand still and act like she is listening to me, it is significant.

Each day I have to remind myself that even though Lilli does not always act like she understands, she truly does.

I also think about how she has been unable to tell us very clearly what is on her mind all of these years. Many people have given up on her along the way, or never believed in the first place that she was intelligent and able to understand. I wonder how that wears on a little person after a long time. Maybe she gave up to a certain extent. Maybe she acted like she didn't understand what was going on because most people did not believe that she understood anyway, so why bother? If people treat you like you're crazy, maybe you start to think that you are. If people treat you like you're ugly, you probably think that you are.

For years I have told Lilli that she was smart. I'd always hoped. I would tell her, because that's what mommies do. Kids need to hear things from their parents so that they will believe it themselves. I tell my other kids those things. Lilli needs to hear it too.

I think maybe this experience with the ipad is just making all of us in the family more aware about a lot of things.

One thing I am struggling with today is what to do about the Nutcracker performance we are going to in a few hours. This morning I asked Lilli what is today? She answered "De" – for December, I'm pretty sure. Totally something Chloe would do. I said that's the month, not the day, what day of the week is it? She typed "Fr." I said no, it's Saturday. I asked her because I wanted to know if she knew because today will be different. Chloe will not go to school, and babysitters will come, and Jasen and Chloe and I will all get dressed up and leave to go see the Nutcracker today.

I wrote in an earlier post about how I struggled with not taking Lilli to the Nutcracker. I took her to the symphony on a trial run to see how she would act. It is not going to work to take her to a two hour performance where she will struggle to sit still and not squeal and clap, or maybe even cry out with frustration as we try to keep her in her seat. I said that I would not feel guilty. But today, I do. I can't help it.

Last year, Chloe and I went without Jasen. We got dressed up and Jasen took our picture in front of the Christmas tree, and we left. No explanations. Just kisses goodbye. This year, Jasen wants to come. Chloe has been so excited about the Nutcracker all year long, and he wants to be part of this experience. Josh obviously doesn't understand or care. But Lilli will.

What will I say to Lilli today? Will I tell her the truth, that we are going to see the Nutcracker without her, and have fun at home without us? Will I just not say anything and hope she does not notice that we are gone for a few hours? Will I try to soften the news and leave something special for her to do while we are gone? I think I am going to try the third option. Her ABA therapist is coming today and that will keep her busy and happy. I know that she will have fun while we are gone.

But I still feel guilty.

Monday, December 5, 2011

My Early Christmas Present: Conversations with Lilli

All of Lilli's life, we have played guessing games, trying to figure her out. Lilli does not shake her head no. She has never nodded her head yes.

All of our "conversations" with Lilli have been one-way. We have spent her seven and a half years of life talking to her, but never with her. Signing and PECS pictures have helped us know what she wants. The Dynovox we had for a short stint was…just ok. But a conversation? Never in my wildest dreams.

There have been certain ways she has been able to tell us yes or no. Those ways have involved scratching, whining, kissing, pushing, crying, hugging, and her own special sign for yes: what I call the nose pull/sniff. It's kind of like blowing a kiss to someone, only it's…a sniff. So even though these little signs have helped a little along the way, they are not consistent, and we are the only ones who knows what they mean. She went through a few months of school before one of the therapists mentioned to me that she was scratching her hand a lot. I said, "Oh! That means 'No'! I should have told you, I'm sorry!" All that time the therapist thought Lilli just had an itchy hand.

Thanks to the ipad, this past week I was blessed to have two-way conversations with my sweet Lilli for the first time in her life.

She can now spell and type "yes" and "no." Sometimes it's like playing the game "Twenty Questions" with her, but it is so amazing. This weekend I talked to her about fun things like Christmas and her favorite things. We are still holding her arm, but it is SO obviously Lilli moving her hand to each letter.

She is also typing some words, but only ones she knows how to spell. I have to be careful how I ask her questions. I have to say, "Do you know how to spell it?" and if she doesn't, she types "No." Then we have to ask more yes or no questions until we can figure out what she is trying to type.

These moments are magical, miraculous. I will never forget this time, how the window to Lilli's world is opening up to us through her ability to type what she wants to say. If all of this has happened in just a few weeks, I can't imagine where we will be in a few months.

I have moments when I doubt. It is just so crazy, that my little girl, who has been silent all of these years, has the ability to answer the questions I have always wanted to ask her! I have tested her. I have tried different ways of making sure that yes, it is completely Lilli doing this, not me. I will ask her something and then think she won't answer. And then she does, and it is something I never thought of or expected. She is full of surprises, and my mind is just reeling with how all of this is unfolding before my very eyes.

As a former elementary school teacher, I am absolutely blown away by this whole experience. I have taught children to read and write before. Many children. The way we are teaching Lilli to read and spell words is completely backwards. There is no "word wall," no phonics, no "sound it out," no "word families." We are not using a dictionary or rhyming words. We - the teacher, ABA therapist, and I - are showing her pictures of objects and people and helping her type the word for it. She is basically memorizing how to spell each word. Or maybe she has a photographic memory and is just remembering what each word looks like. But we have found that by doing this, she is learning how to read and spell. She understands the sounds of words and the letters that make up the sounds. She is typing some words phonetically. For example today we were watching an old Muppets Show video. I pointed at the screen and said "Do you know what his name is?" She typed "F-a-z-z," and then hesitated. It was Fozzie Bear. Well, it totally sounds like "Fazz – ie" and she did not know how to type the "ee" ending sound. Or maybe she just thought that the two "z"s were pronounced separately, for "Faz – z." I cannot count how many times this has happened in the past two weeks. Since the night of the symphony, I started to ask her questions on the ipad, and she has been typing answers! I now know what she wants for Christmas ("elmo"), what her favorite color is, ("gree") and that she does not like cold weather or "ic" (ice). Yesterday we had conversations about her seizures, Christmas, school, and Jesus. It was like having a conversation with any young child. I would say some things and then ask her a simple question with a yes or no answer. Every once in awhile I would ask her a question to see if she could spell a word. When I asked her if she wanted to know anything about her seizures, she typed "wh." I guessed that was for the word "why."

It has been miraculous to see Lilli transform before my eyes from a frustrated, non-verbal child into a child who can calmly type to me what she is thinking. If she can spell it, that is. I have been praying for years that Lilli would be able to speak. Well, this is close enough for me right now. I still believe that she will. Until that day, we can still have a conversation without her scratching me or crying. It is a miracle. And that is better than any Christmas present that I can dream of.