Lilli

Lilli

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.


<>  </> <>  </> <> </>
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?

No.

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.


 


 


 

Wednesday, November 23, 2011

Experimental Trip to the Symphony

I have a sense of humor about this. I probably should not have done it, but then I never would have known.

I took Lilli to the symphony.



It was just the two of us. We got all dressed up. Well, as dressy as possible for us. Lilli wore white running shoes with her black dress, but I didn't see the fashion police there so it was OK. Jasen took our picture together before we left.


I could tell Lilli was excited. She was in a great mood, kissing her hands, waving them in the air and making happy sounds as we rode in the car. I talked to her about what it would be like, and how she should act. This was a special night for us.

When we arrived, I took our time. I didn't want her to be overwhelmed by a crowd of people, so I thought it would be better to wait and go in a few minutes late. She sometimes gets anxious when a lot of people are around, and all the talking and noise could set her off crying and wanting to escape. She held my hand and bounced with happiness down the empty sidewalk in the dark. Lilli's happy walk is like a little dance. It's hard to describe but it's a whole-body-happy wiggle-shake kind of move.

We entered an empty lobby. Perfect. Well, you really should never show up to the symphony late. But you can see my reasoning. Since it had already started, we had to wait until they were finished with the first movement before we could go in and sit down. The sweet young girl handing out programs explained she did not want us to be a disruption.

"That's fine, we'll just take a little walk," I said. No problem, I thought. I was glad Lilli was in "quiet – happy mode." Just as long as she didn't turn the volume up to her "squeal-clap-happy mode," we would be just fine. My plan was to slip quickly into the last row as soon as we heard polite applause.

I'd had a little dilemma about whether or not to put her in a stroller. I decided to brave it without one, thinking Lilli could just sit in my lap. That way I could hug her arms and hopefully keep her from clapping when I felt her get the urge during inappropriate times. It turned out to be a good decision, because the old building was not handicap accessible. Hard to believe in this day and age in our country, but we encounter that problem a lot.

The beautiful carpeted staircases turned out to be our downfall. As we walked around the upstairs lobby outside the doors to the auditorium, Lilli spied the staircase to the balcony. It was roped off, and again the young girl at the door explained, sorry, the balcony was closed tonight. Lilli dropped to the floor as those words were still coming out of her mouth, and crawled under the velvet ropes. Lilli really loves steps. When she sees steps, she is compelled to go up them, no matter what. I got down and pulled her out and tried to make her stand up. Wow, is she strong.

"Listen, Lilli, do you hear the symphony? Listen to the different instruments!" I tried to distract her and led her away from the balcony staircase. We took a few laps back and forth and looked over the railing to the first floor lobby. Lilli's happy walk turned into happy stomping, which made a "neat" echo-y sound. It is difficult to keep a child from stomping, I discovered. Even harder to tell a child with autism to be quiet. There were staircases to the downstairs and balcony on both ends: four sets total. I was beginning to get a teeny bit tense.

Finally we heard applause! I scooped her up and carried her in. With one swift movement I sat down in the last row in the corner, with her on my lap. I breathed a sigh of relief and looked around. What? The performers were all getting up and walking off the stage! The house lights came up. I guess there was an intermission already. We sat and Lilli squirmed as I tried to keep her occupied. I pointed out some of the instruments on the stage. I whispered Twinkle Twinkle Little Star until she started giggling. I kissed her and told her that I was proud of her and she had to be super quiet when the music started again.

After what seemed like an endless intermission, the lights went down and everyone walked out on stage. As the audience clapped for the conductor, Lilli sat up straight and clapped with delight.

Here goes, I thought.

She was preoccupied with a loose thread on her sleeve for a few seconds, and then the music started. She popped up her head and looked at the stage. Instantly her hands flew up in the air and started flapping as the music swelled majestically. She loved it!

And then, she squealed.

It was a little squeal. I think she just could not help herself. I shushed her and hugged her into my lap. She made a kiss sound. Yikes, we've only been here for about twenty seconds, I thought.

As the music built to a powerful crescendo, she swayed back and forth and I relaxed a little. Abruptly, the music stopped. Silence. As the conductor froze his hands in the air, you could hear nothing, for about two beats. I held my breath. At that instant, Lilli quickly slipped her arms out of my grasp and clapped. Four quick claps.

The music started again. Instead of sliding down in our seat to the floor in embarassment, I swept her up and got out of there, fast. All in all, I think we indulged in about two minutes of the symphony. Possibly less.

Some people might think, who cares? You should have stayed. No, that would have been very disruptive and rude. It wasn't like we were in church with a baby making a little noise during the sermon. It was the symphony. I did not see any other children there. Certainly not any other children clapping and squealing. Others might think, you never should have taken her in the first place, what did you expect?

The reason I took her is because I had to know. I had to know how she would tolerate it. I knew she would love it. She loves classical music. But we are taking Chloe to see the Nutcracker in a few weeks, and I had been wrestling with the idea of taking Lilli too. Again with the mother guilt. Lilli loves the Nutcracker music. I knew she would be excited to be there with us, and would probably do fine sitting in our laps. But I wanted to know how she would act. I had a feeling she would not be able to contain herself and make disruptive sounds, but I had to try it. So I took her to the same exact place where we will be going to the Nutcracker in a few weeks. I thought, what better experiment than to slip in to a free admission symphony performance and see how she does for a few minutes? Well, now I know. She is not ready to go to the Nutcracker just yet. Maybe a minute or two of the performance, but not two hours. And that's OK. She did not have a meltdown, and she did not cry or run away from me. She was happy about the whole, brief experience.

Baby steps.

I understand why parents of children with autism yearn so much for "autism-friendly" shows. I hope to hear about one and take Lilli someday soon. I know she would love a first trip to the movies, a play, or a trip to the symphony where she could be free to let out the happy squeals and claps.

When we take Chloe to the Nutcracker in a few weeks, I will not feel guilty about leaving Lilli behind. Instead I will feel hope that someday I can either take her to an "autism-friendly" performance of the Nutcracker, or that she will eventually gain some self-control and be able to sit appropriately for the show.

For now, I will just have to play loud symphony music in our living room.

Monday, November 21, 2011

I Think She Just Said “Hi”


We are in an odd place right now. The rest of the world might think I am deluded. And maybe I am. But if I am, then so is the ABA therapist, and the teacher too. Lilli is really learning how to spell and type by herself. I don't know why I am so incredulous some days. I was the one who believed she could do it in the first place.

Last night, I was sitting with her on the couch. Jasen had the other two kids playing outside, and Lilli and I were having a rare quiet moment together. I bought a few new apps and I was teaching them to her, hand over hand. It was enjoyable for both of us, because she craves alone time with me but gets interrupted so often by her siblings. I pulled up Proloquo2go (her communication app) and typed out a few words and sentences. I helped Lilli type a few words she knows well. Then I said, "Ok Lilli, you type something to me. Anything you want to say. Go ahead!"

I held her arm, but not her hand. Try to imagine if you were loosely holding someone's arm as they type. Would you be able to control the letters they type? Maybe you could control their arm to a general area of the keyboard, but think about this. The keyboard on the Proloquo app is slightly smaller than the keyboard on our laptop. And, it's a flat screen. Pretty hard to have someone type a word correctly unless you have their actual hand, or fingers.

She typed the word "hi." Then she hit the "speak" button.

I said, "Hi! Wow Lilli, you said hi to me! Good job!" But I thought it was chance. A nice accident. H and i are near each other. I'll take it, I thought. Even if it was a happy mistake, I want to encourage her.

"Type something else, Lilli!" and I took her arm again.

Again she typed "hi."Then moved up to the speak button. I instantly started to second guess and wondered if I had made her do it. But as I said before, it is pretty hard to lead her fingers to the "h" and the "i" while loosely holding the middle of her arm. Then there is the clear movement of her arm away from the keyboard up to the speak button, which signals that she knows the word is complete.

Up until now there have been many of these moments where all of us are thinking Lilli is typing on her own but with our slight guidance. I don't care for this analogy, but it seems a little like the ouija board experience, where you cannot tell whose hand is making it move. But this is, uh, pretty different, because there is no chance that an evil spirit is typing the answers here.

The difference last night was the fact that I did not know what she was going to type before she did it. We are usually telling her what words to type. For example, before she typed "hi," I had typed the word "bird" and helped her copy it. She could see how to spell "bird" because I typed it first and put it up top. But when she typed "hi" I had no idea what she was going to say. Twice.

I said we were doing this with faith. I wonder why it is so surprising sometimes when our prayers DO get answered. Even big ones that seem impossible. I'm so glad our God specializes in making the seemingly impossible things become possible.







 

Tuesday, November 15, 2011

Looking Back to find Hope


One thing I have done to encourage myself and find hope for the future is to look back and see how far we have come. I often say to people who are getting to know Lilli, "You should have seen her this time last year," or "She has come such a long way." It's different than my other two children, who I expect to continually make progress like any typical kid. With Lilli, it is a surprise, and sometimes an unexpected miracle. I have to remind people that the doctors did tell us she would never walk, or talk.

When I looked back over the last four, busy weeks since I posted, I realized we have done a lot this fall. It made me think of what things were like last fall.

This time last year, Lilli was using her PECS books with Velcro pictures, and going to public school. We were on the waiting list for ABA therapy. We had no way of knowing how much Lilli knew or understood about letters or reading. She could not do any computer activities by herself.

Now, she is learning at home with an ipad provided by the school, and has an ABA therapist and a homebound teacher to teach her. She can do Starfall by herself, and now does the "Elmo Loves ABCs" app by herself. She is showing us daily that she knows her letters through the ipad. The Elmo app has a "letter quiz" where Lilli has to touch the letter Elmo says. She is getting them correct and we are ecstatic about it! Lilli's progress with her ipad has been amazing. At least once a day I think the same thought: "I wish I could write about this." Well, at least I don't have writer's block. It is a different kind of writer's block. I am literally blocked from writing on my computer by the bodies of my children.

I thought I would show a few pictures of what our past few weeks have been like.


Lilli is typing the word "bird" almost by herself!


Here is Lilli typing the word "bird" on her ipad with her teacher, Leslie. In the past few weeks, two major things happened. The first thing was that both the teacher and the therapist told me they felt like Lilli was really starting to lead their hands to the right letters when typing certain words. We labeled things around the house and began to have Lilli type about everything. Sometimes she seemed to already know how to spell the words, and led our hands to some of the letters.

The second thing that happened as a result of the first, was the idea that we "wean" Lilli off of holding our fingers while typing. It was Morgan, the ABA therapist's, idea that we have Lilli hold something in her hand while typing. We would hold onto the object too, but gradually fade away from guiding Lilli's hand. Lilli has a lot of "moral support" needs going on. She thinks she needs help more than she actually does in some cases. In this picture Lilli is holding a rubber stick (we used to use it for a handle for utensils when feeding her) and the teacher is only touching the bottom with her finger. Lilli can see out of the corner of her eye that the teacher's hand and arm are there. But really, she is typing the letters correctly on her own. When she is ready, we will start to take our fingers off the end of the "stick." Is it tricking her? Kind of. But in a good way!

This October we went as a family to visit a farm with a pumpkin patch. We went to the same place last October. I looked to see if I had taken pictures last year, but I could not find any. I probably did not even take any pictures because it was such a bummer of an experience last year. Jasen says I can be too negative about things sometimes. But honestly all I remember about the trip to the pumpkin patch last year was Lilli standing in the middle of it, screaming and sobbing, while tons of people around us stared, and we tried to gently hurry-up our little Chloe. Chloe was thrilled about picking her very own pumpkin, and took her time in choosing the perfect one. I was completely stressed out by Lilli's crying. Sometimes she has this guttural, angry, growly cry when she is overwhelmed. It was very obvious she absolutely hated the whole pumpkin patch experience. It's almost funny now, to think of how happy and naïve we were as we piled in the car to go to the pumpkin patch for the very first time as a family. It was not the fun/togetherness-experience we had imagined. I don't think Chloe really noticed too much. She was so happy about that pumpkin. But Jasen and I drove home in silence, depressed that Lilli could not handle what we thought would be a simple, fun outing.

This year, we were more prepared. Physically, and mentally. Would it have been easier to just to split up and have one of us stay home with Lilli? Sure. But we do want to try to do things as a family. It is usually a gamble for how it will go. This time, my niece Kelley went with us, and it reminded me that it is always good to have one adult per kid when you go on a family outing. Once again, Lilli got upset. It can be an overwhelming place, with all the people, noise, and busy activity. But we handled it differently than we did last year. My husband took Lilli on a walk out by the cornfield, away from all the noise and kids. When we tried to take her to the pumpkin patch, she got stressed again, so he took her somewhere else while Chloe chose her pumpkin. My niece, Kelley, helped me with Josh and Chloe. Meanwhile Jasen found the perfect way to calm Lilli – the water falling from the kids' gem mine activity. The pictures I got were priceless: Jasen taking a calm walk with Lilli, Chloe and Josh playing, Chloe having a meltdown because we told her it was time to go next to Lilli happily playing with the falling water.
Lilli takes a calm walk with Daddy away from all the people and noise.
Chloe: "I don't want to go!" Lilli is thinking: "I could stay here all day and play with this water."

We didn't get the family picture last year...an improvement this year!
"Cousin Kelley" (Chloe calls her that), Josh and Chloe

Trick or treating was…just OK. As I took pictures of the kids on the couch before we left the house, we noticed Lilli did not look well. I snapped a few pictures and said, "Jasen, she looks like she feels sick." She started to have a seizure. We did eventually go out trick or treating and pushed Lilli in her stroller, but she did not seem to enjoy it like she did last year. We had to split up and Jasen took Lilli back home while I took the other two around. Halloween is just not the event for Lilli. She can't even eat the candy, and does not enjoy dressing up…so, it's almost like torture. We look at it as a chance to take a family walk around the neighborhood (in the dark). However, this year she did do something that impressed us. Jasen pulled her out of the stroller and helped her walk up the steps to a lot of the houses and greet the people at their door. At one house, he stood behind her and said, "Lilli, say 'Trick or treat!" We know she can't say it, but we still prompt her like we prompt Josh, who is also learning to communicate. Lilli took her hand and made a sign. Jasen looked at me and said, "What does that mean?" I smiled and said, "I think that is the sign for 'stairs'." Well, she had just walked up stairs, and she doesn't know how to sign "trick or treat," so we thought that was great. Plus, she probably just wanted to walk back down them and leave since she wasn't into the whole activity. Hey, that's progress! She didn't sign last year.
Lion, Rapunzel, and Mulan.

What I continue to learn as Lilli's mom is that we can do things together as a family, but we just have to do things a little differently to help it be enjoyable. Some people say you should let the past go and move on. But I have to keep looking back, because it gives me incredible hope for what is to come. This is not all there is. There will be much more, and I look forward to the surprises and miracles in the future.


Saturday, October 15, 2011

The “Special” Lives of Siblings


Chloe held a fat preschool pencil in one hand and a notebook in the other. "Mommy, I have to make a list in my 'Handy-Dandy Notebook!'" she exclaimed. (That's a term from Blue's Clues in case you didn't know.) She can write the letters by herself, she just needs me to spell the words for her.

"Mommy, how do you write the word 'therapy'?"

That's right. My five year old asked me to spell the word "therapy." I spelled it, and she wrote it neatly in her tiny spiral-bound notebook.

Chloe just turned five in September. A few weeks ago, she drew a very detailed picture and presented it to me. "It's Lilli having therapy! See, that's Lilli and that's the potty, and that's the tv and the movies, and that's the therapist saying, "Yay Lilli!" I stared at it, speechless.

When Chloe was three she once drew a picture and held it out to me proudly. "Look, Mommy, I drew Diastat!"

Diastat is Lilli's emergency seizure medication that comes in a plastic box that we carry with us everywhere we go. What three year old draws a picture of seizure medication?

She actually has asked me on multiple occasions, "Mommy, do you have the Diastat? Don't forget it!" She has only seen Lilli have a few seizures. We have tried to shelter her from that because it is scary. One time I was alone and I needed her help while Lilli was having one. After that she started to pray, "God please don't let me have a seizure," in her bedtime prayers and I had to explain that not everybody has seizures.

What a "different" kind of life a sibling of a child with special needs lives. It's not necessarily bad. There are a lot of great learning experiences and opportunities for discussion about differences and helping others. In the past, people have commented to me, "Wow, Chloe is going to grow up with a wonderful sense of compassion and awareness for others' needs. She will have a depth to her that most kids do not have because of Lilli's disabilities." I pray that is true for both of Lilli's siblings, Josh and Chloe. I think anyone could list positive character qualities that a sibling might have instilled in them as they grow. I am not sure I can eloquently sum up this difference. I have actually been writing and changing this particular post for over a month. I have found it very difficult to be succinct because there are so many facets to the sibling's situation. Siblings of children with special needs do have a very different home life experience than children who don't have a sibling with special needs. I am just going to highlight several issues we have experienced personally:


  1. Siblings can pick up undesirable behaviors from their siblings who have special needs.
  2. Siblings are often asked to be responsible for tasks that a "typical" child is not asked to do, simply because the parent needs an extra set of hands.
  3. Siblings often miss out on experiences or activities because of the health, behavior of their special needs sibling, or handicap inaccessibility, or simply lack of childcare or help.
  4. Siblings often endure countless hours in waiting rooms of doctor's offices and therapy clinics.
  5. Siblings sometimes have their wants or needs pushed to the "bottom of the list" because the child with special needs' needs are greater.
  6. Siblings sometimes feel ignored by their parents because their parents are so focused on medical issues, therapy, etc.
I never want Josh and Chloe to feel slighted because their sister's special needs demand so much from all of us. But unfortunately it does happen to siblings in family situations like ours. This subject is on my mind constantly. I honestly ponder it and make decisions based on it every single day. It is by far one of my biggest challenges as a mom.

Picking up undesirable behaviors is at the forefront of my mind right now because I am seeing it every day. Lilli, being the oldest child, is the role model. It is just natural for Josh and Chloe to watch Lilli and see what she does, and see our response to her behaviors. It is a tricky thing to handle as a parent. A few nights ago, 19 month old Josh came over to me and grabbed my hand. He pulled on it until I got up from my chair. He then proceeded to drag me to the television, look at it, and make a "M-M-M" sound by clapping his hand over his mouth. Oh my goodness, that was a total "Lilli move." He also grabbed my hand and pulled me to the cabinet to ask me for a cheesepuff. Anyone who has ever been to my house even once has been pulled to this cabinet by Lilli for a cheesepuff. It has been a hard habit to break and she is getting strong.

Josh watches her all day and copies her. Some things are good. He is learning sign language. But overall, it is not really a great thing. I don't want him to watch her struggle to use a fork to eat, I don't want him to see how she still needs help getting dressed and makes no attempt to bathe herself or use the potty. I don't want him to observe how she drags people to things she wants and whines when she can't communicate. Why? Because he copies her. And we are fortunate. Think of the families who have children that hit themselves, bang their heads on the floor, or run away. What do those siblings think and copy?

In the past two years that Chloe has gone to preschool, I found myself explaining to the teachers that Chloe had a special needs sibling as a role model, and she desperately needed to be around other "typically developing" kids. Lilli ignored Chloe and never acknowledged her, let alone play with her. Chloe didn't know how to eat like a normal kid. She watched us spoon feed Lilli puree food all day long for years. The light bulb went on for her when I sent her to a friend's house and she ate snacks and chatted with other girls her age for a few weeks. After that, her language skills took off and she began to eat better. It is not like an only child who has no other children to watch. It is the fact that Chloe and Josh watch Lilli and copy her, and then we have to try and undo that and re-teach them the correct ways to act. At age three and four, it was difficult to explain to Chloe why Lilli is different, and that she was not allowed to act like that. Now that she is five we have had several talks about Lilli's differences. Chloe is starting to get it. But it is still tough.

Some things are just downright unfair.

I can think of dozens of examples that occur each day, and it hurts my heart to think about it.

Chloe finally realized that Lilli "gets" to sleep in our room with us because of her seizures, while she has to sleep in her own room across the hall.

We go to the library and Lilli starts to wail. I pressure Chloe and whisper urgently, "Hurry UP! Pick out a movie and let's GO 'cause your sister is losing it!"

The living room is a wreck from all three kids, and Chloe is the only one who cleans it up. Lilli won't or can't clean it up, depending on whether you look at her cerebral palsy or her autism, and Josh is too little to really help much. We are trying to teach him, but dropping a few Legos into a container is nothing compared to what Chloe does. It is just not fair and I know this.

I have taken all three of them places and asked Chloe to push Josh in his stroller so that I can push Lilli. Oh my goodness she is barely five. I actually have to depend on a five year old for help, every day. She holds doors open for me while I push Josh's stroller with one hand and guide Lilli with the other.

Chloe asks me if we can go certain places, do certain things. A lot of decisions depend on Lilli. I have too many examples to list.

Guilt? Yeah, I've got it.

We have missed many events because Lilli can't handle certain situations. We have left things early because of Lilli's meltdowns. I almost did not sign Chloe up for dance class because I could not figure out what I would do about Lilli. A few weeks ago I took Chloe to her first dance class. I sat in the second-story hall of the old house and waited while she and a dozen other little girls tapped loudly on hard wood floors and music blared from rooms around us. While I should have been excited that her little four year old dream of dancing was coming true, I hung my head and thought (loudly), "What am I doing? Why did I ever think I could do this?" I was worrying about the possibility that one day I might have to drag Lilli and Josh with us to dance in the event that my husband does not make it home early to watch them. I know Lilli would have a melt-down because of the noise.

The dysfunction of a mom of a special needs child. I think that I can't do things because of Lilli. Tragically, it sometimes keeps me from doing things for my other kids.

So how can others outside the home help?

Here are a few ways:

  1. Ask the parents if you can invite their child to go with you to special events that the family would not typically attempt because of the child's special needs. For example, many kids with autism do not do well at the movie theater or ball games because of the overwhelming sensory experience. Can you believe that Chloe has never been to the movies? (Guilt!) Restaurants are a challenge for many reasons. Plays, concerts, the circus, most of these would be a case that we could not go as a whole family.
  2. Offer to babysit the child with special needs so that both parents can take the siblings somewhere. A parent would be eternally grateful for the opportunity to take the other children somewhere they normally would not be able to go.
  3. Pay special attention to the siblings and their accomplishments. Sometimes parents of kids with special needs are so wrapped up in the world of medicine, hospitals, feeding tubes, therapy and doctor appointments, or they are just plain sleep deprived, they have little energy left to focus on the things that are important to the siblings. Sometimes a parent has to miss big things. Jasen and I take turns a lot, but even that is hard. Jasen missed Chloe's Christmas play last year. Currently we are arguing over who gets to take Chloe to see the Nutcracker this year. I took her last year. We hope we can get the nurse to work so we can both go.
Many people have helped us in countless ways. I could write an endless list of how people have helped us personally with the "sibling" issues so far. I deeply appreciate when others help give attention to Josh and Chloe when I cannot. I hope this post inspires someone, somewhere to think of the siblings of a child with special needs, and their unique situation. Most of the time the focus is on the child with special needs. But the siblings of these children have special needs too.

Some links with helpful articles & ideas about this subject:

Check out this organization: http://www.siblingsupport.org/

A wonderful blog written by a mom of a child with special needs with tons of resources. Wow, this blog is a million times more informative than mine. She also has many great links to other resources about this subject. Highly recommended. Check it out: http://www.insight.org/library/articles/special-needs/challenges-of-siblings.html

Article: Group offers support to siblings of special-needs children http://www.recordnet.com/apps/pbcs.dll/article?AID=/20070515/A_LIFE/705150311




 

Tuesday, October 4, 2011

Why the Word “Retard” Hurts


Everyone says it, right? I used to say it. But after you have a child like Lilli, well, you don't say it anymore. It would be like joking about getting cancer to someone going through chemo. You just…don't.

I want to make it clear that this particular post is not "aimed" at anyone. I have no hard feelings at all. This word is so prevalent that I am not writing about it for a specific person to read and think I am talking about "them." I write this blog with concern and thoughtfulness for others, to help and educate, and to give people a window into the world of what it's like to be a mom of a kid with special needs. I hope anyone who reads it is encouraged in some way.

This is old news, isn't it? Come on, everyone knows they should not use the word "retard," don't they? Well, unfortunately, it's one of those words people still use when joking around. I guess I thought it was worth my time to help others understand, even after all of this time, that yes, this word is still around. I even hear it from friends and family.

I spent time recently with a new acquaintance, a friend of a friend. She was super sweet and I liked her instantly. We both babbled on about "mom stuff." And then she said the phrase "I hope people don't think I'm retarded!" A few minutes later she said, "I feel like a retard!"

I winced a little bit but ignored it.

Moments later, her husband walked over and said something about looking like a "retard." Yikes. I really, really like these wonderful people. I wasn't offended, I just was not sure they knew that "retard" is a hurtful, recently outdated term. They know about Lilli. I guess they just did not make the connection. I just wish I could tell them that they might want to consider dropping that word from their vocabulary, because it's painful to others. I know they just had no idea.

I want to try and explain how it affects me personally. I can't speak for other parents of kids with special needs, but I think it's a pretty safe bet that there are others out there like me. To give an analogy of how it feels, I can only think to compare this to other experiences I have had with personally painful words in the past.

When I was 13 my mom died after battling 5 years with cancer. I was in a world of hurt, and for years whenever anyone said the word "cancer" or "died" or even the word "mom," I jumped a little. It was like it physically hurt to hear those words. I was so sensitive to death back then, I could not stand it when people joked and said "Oh I almost died laughing!" or "I was about to die of embarrassment." Simply because it hurt to hear the word "die." Whenever I heard the word "mom," I would instantly feel hurt in my heart, because I didn't have a mom anymore. It took years for those words to not sting me, but now they don't. Now, I certainly did not expect anyone to stop using the words "die" or "mom" around me. I am just explaining that I had a reaction when they said those words because of my personal experience. I have a similar but more muted reaction when I hear the word "retard." But it is in a different category. That word is not necessary for everyday conversation. There is a difference.

I gave that analogy so that you might understand why a person who has a loved one with special needs might be upset when you use the word "retard." It is a loaded word. It makes no sense to use it when joking around. Doesn't everyone have these words with personal meaning that sit like waiting water balloons? You're having a normal conversation with someone, and they use a normal, everyday word, only that particular word has all kinds of baggage attached to it for you. All of the sudden, BANG! You're hit with it. But you go on with the conversation and shrug it off. Think of words that sting you personally…only for a second maybe, but you still have to mentally shake it off and move on. Racial slurs. Maybe words about crime, such as rape, shot, killed, drugs, prison. Perhaps words about health: Cancer. Heart disease. Surgery. Terminal illness. Maybe words like: Divorced. Widowed. Cheated. Sued. Lied. Robbed. Foreclosure. Unemployed.

I am assuming everyone has a word or two like this. Whatever traumatic thing has happened to you, those words related to that trauma have some degree of hurt dangling from them. Words change too, over time. I can hear the word "mom" and not jump now. Heck, I hear the word "mom" all day long from Chloe and it makes me yell "HANG ON A SECOND!!!" So thankfully our hearts can heal over time.

In the NICU at Lilli's birth, doctors told Jasen, "Your daughter has brain damage." "Well, what does that mean?" Jasen asked. "It means she will never walk or talk and she will need help all her life." I would venture to say those were probably the most life-changing, drop-a-bomb-on-you words Jasen has ever heard. I was not there to be hit with that, I was recovering on another hospital floor. Jasen tried to soften the blow when he told me later, but how do you soften the words "brain damage?" Years later, in a school meeting about Lilli in Virginia, an "autism expert" made a joke before the meeting began. There was a broken chair at the conference table. He said, "Oh, I'd better not sit in that chair, I might fall and hit my head and get brain damage!" Everyone laughed except Jasen and me. Um, did the guy realize that there were two parents sitting at the table, who had a child with…brain damage? What a terrible way to start out a meeting about Lilli. I never forgot that.


As for the word "retard…"

Doctors are not supposed to use that word anymore, it's out-dated. Newer doctors use the term "cognitive delay" or "mentally challenged." That's the PC term. But just a few short years ago when Lilli was born, everyone was still saying "mentally retarded" to us. I can think of 6 different specialists off the top of my head in those first few years who tossed the term "retarded" around when we took Lilli to figure out what was going on with her. Only it didn't feel like a water balloon when they said it. It felt more like a ticking bomb being casually thrown around the room. I remember when one specialist told me Lilli had cerebral palsy. She was 12 months old. He got all quiet, sat down in front of me and handed me a pamphlet while slowly telling me "Lilli has something we call….cerebral palsy." He explained it to me while an intern stood awkwardly in the corner and I tried not to cry as the floor fell out from underneath me. When Lilli was about three, we spent a lot of time trying to figure out what was going on with her. Before she was diagnosed with autism, specialists speculated about different diagnoses. One doctor said, "I don't think she has autism. I think she is just mentally retarded."

See. We parents of special kids hear that term in a not so funny way. I am sure there are still a ton of old school doctors who say it to patients.

Parents of kids with special needs still hear the term "retarded" all of the time from the government, too. There is something called an "MR waiver" – MR stands for "mentally retarded." Pretty much all kids with some kind of mental diagnosis qualify for it. The waiting list in South Carolina is in the thousands. These are all kids waiting for the state to qualify them for benefits. Having the MR waiver helps pay for medical equipment, adult sized diapers, formula for tube-fed kids, etc. Being on the waiting list means you have to pay for it all yourself until maybe you might reach the top in about 5 to 10 years. In the meantime, your kid is on the MR - Mentally Retarded - waiting list. Lilli is on it.

Different words have hurtful meanings for different people. And for us, the word "retard" stings a little every time we hear it. I can't help it. Friends and family who love us and love Lilli will joke and use the word "retard," and sometimes I will have a split second irrational thought: "That person doesn't love Lilli. They don't love me. If they loved us they would be sensitive and not say that word." I KNOW that is so ridiculous! But that is how much it hurts. You might read this and think, "It's just a word. It has no meaning. I don't mean it like that when I say it. I'm just joking around."

I am sure you are joking. But it still hurts.








 

Tuesday, September 27, 2011

Teaching Lilli to Type


It takes a little time sometimes
To get your feet back on the ground
It takes a little time sometimes
To get the Titanic turned back around
It takes a little time sometimes
But baby you're not going down
It takes more than you've got right now
Give it, give it time
(Amy Grant & Wayne Kirkpatrick)


I heard this song on the radio one day when Lilli was about four years old. This was one of those "turning point – moments" in my life. At that time, I had been so discouraged about her lack of progress in therapy. I had such high hopes for her to learn to do things, but I felt like people thought we were crazy to think she would ever run, talk, or learn to do things for herself. Plus, we kept taking steps backward every time she had a bad seizure or got really sick. I pulled in the driveway and sat there, with tears as I listened to the lyrics. I remember thinking that it was a sweet message from God, to have hope and faith.

This is going to be my new theme song of Lilli's life, I thought. It takes a little time. Give it time.

In hindsight I can now see that Lilli does learn many things, but quite simply, it takes much longer than we would expect a typical child to take. It takes a lot of faith and encouragement to keep going. For example, she did not start to run, really RUN until after we moved here when she was five. You should see her now. I can hardly catch her. I wish every parent of a young child with developmental delays would be encouraged that even though it "takes a little time sometimes," you just have to give it time and keep trying. 

Speaking of something we are spending time on…I am so excited to share about how Lilli is learning to type. We are just at the beginning of this chapter. I have many hopes in posting this. One hope is that everyone will cheer Lilli on, and pray earnestly for her and for all of us who are working with her, as she learns to type, spell, read, and hopefully communicate in this way. We need prayer. This is a long road.

Another hope is that teachers, therapists, or parents of kids with special needs might see this and be inspired to try it with a child they know.

Finally, I hope that every person who reads this and views these videos will see faith in action. "Faith is being sure of what we hope for and certain of what we do not see." I absolutely believe that Lilli is going to be able to communicate clearly with us someday. I am constantly praying that she will speak. But perhaps this will be a way she can "speak," through writing. We believe God has put all of these things in place for us to do this. And now, we just do it, and wait. We have the teacher, the ABA therapist, the ipad. We have no guarantees. There is no "expert" telling us that if we do this a certain way, it will definitely be a success. We only have hope and faith that this will work, and that all of our many hours of hard work will not be in vain.

As for the typing…there was no set "typing program." In an earlier post, I described how I simply viewed a Youtube video, and was inspired to start teaching Lilli how to type. Our "Lilli Typing Program" began with my research on kid-friendly keyboards.

First, Lilli's totally awesome public school provided her a touch screen monitor that we hooked up to our laptop. She learned how to do the www.starfall.com website with the touch screen. That helped her practice using her pointer finger and aim at specific parts of the screen. Before that, she had been randomly hitting the screen with no real purpose. Then, we bought a Leap Frog Click Start. We worked on typing her name and short words like "Go." Then the school purchased an ipad for her. (BTW, this school is not overflowing with money, they just DO what they think kids really need). She learned quickly to do the Starfall app on the ipad. We found the app called "Typing Bee." The school bought the app "Proloquo2Go" for her to use. All of these things combined have helped us get to the point where we are now. Anyone can think of what a child likes, and use it to help them learn. That is all we've done. We capitalize on things that motivate Lilli, and use them to teach her new things.

I made alphabet cards with Velcro to stick on a board. Lilli loves the sound of Velcro; it is motivating to her. She pays attention to the letter cards. She tolerates the hand over hand. She seems very interested in the whole process. The ABA therapist and the homebound teacher are both working on typing. They do it in a different, but complimentary way. The ABA therapist is working on the same two words over and over, to teach Lilli to do it independently. We use special cling stickers I found online to highlight the letters on the keyboard. Lilli is only typing two words with the ABA therapist right now; "bus" and "star." They watch a Youtube clip of "Wheels on the Bus" and "Twinkle Twinkle Little Star" as motivators. They do this many times every day. The goal is to get Lilli to type these two words on her own. Here is a clip of Lilli working with the ABA therapist on typing:


The teacher is helping Lilli to type many words each day. She has a set list that they type each day in the same order, as they watch different Youtube movies. Lilli likes Baby Einstein movies, so the teacher chooses objects shown in the movie clips to type about. The teacher does not use the keyboard stickers because she helps Lilli type so many different words. She is working more on reading, spelling, and word recognition. This also helps Lilli get familiar with where letters are on the keyboard. Here is a clip of Lilli working on typing with the teacher:


We have been working on typing for six months. If you count Lilli learning to use the touchscreen before that, it's been a few years. Someone might watch this video or read this post and think, "That poor mom is in denial. Six months and they are still holding her hand and making that girl touch each letter! That is not typing! They are doing it FOR her!" Well, let me shake my head and tell that person that we have spent years teaching Lilli to do various things. Six months is nothing. Bring on the hard work, because we are ALL IN. We are doing this. And I cannot WAIT to post a video of Lilli typing a word by herself someday.

Wednesday, September 21, 2011

Lilli Masters the Stairs


I am not standing at the bottom of the staircase, watching. Not yet. I am still walking backwards, down the stairs in front of Lilli so I can catch her in case she falls. But she is definitely doing it on her own. Another victory for Lilli, after over three years of hard work. And another answer to prayer.

It's been awhile since I have been able to post. Two days after my last post about seizures, Lilli had the worst seizure she has had in almost a year. It was a long one at 5 am, and we called 911. She had trouble breathing and it was incredibly scary, but now we officially have oxygen on hand in case it happens again. After the seizure, I felt like we took a few steps back and had to catch back up. It has been a challenging month in several ways for us. But we can always find something to be thankful for. After looking at pictures of flood damage near some dear friends and family in Bloomsburg, PA, I could not possibly complain. We are very blessed.

The video posted here is of Lilli walking down the stairs in our house to the finished basement. This captures a huge milestone for Lilli because she has never walked down an entire flight of stairs by herself before. This is the first week ever in her life of holding onto the railing and going down the steps with no help. She has put in countless hours of physical therapy working on this skill. My father in law, Terry C., made her a special set of wooden therapy steps that we had in our living room in Virginia for many months. It took up most of the room, but the results were worth the inconvenience of stepping around it every day. Many people, including therapists, family members, and friends, have spent much time and effort in teaching Lilli to walk up and down stairs. I used to stand on one side of the therapy steps with a portable DVD player to coax her to walk up the other side. My husband Jasen gets the most credit of all. He insisted on walking her up and down the steps every day several times, for exercise and practice. Many of those sessions were tough, with Lilli crying and whining the entire time.

When Lilli was younger I read as many books about kids with cerebral palsy as I could find. One of them was a book called "Karen." Karen had cerebral palsy, and hated walking up and down stairs as a young child. It was difficult and scary for her. The author describes how the mother would throw Karen's favorite doll to the bottom of the steps and say, "If you want it, you have to go down the steps to get it." Then when she got to the bottom, the mom would throw the doll back up to the top to make her go back up. At the time, I thought it was cruel. But now, years later, after our own experience with Lilli, I understand. Sometimes parents have to use unconventional methods to help their children with special needs overcome their fears and difficulties. We personally have used many odd objects as incentives to attempt the steps. Keys, bottles of water, cheesepuffs, and movies on the portable DVD player are a few. Outsiders may not understand. But for us, it worked. I hope that by posting this, some of those people who helped Lilli along the way will get a chance to see the finished work as a result of all of our combined efforts. I also hope that anyone who is working hard with a child with special needs on any skill is encouraged by this story. It may seem small to some, but it is a huge deal to us. Believe me, coming from someone who ruptured a disk from carrying a three year old everywhere, it is a big deal to have Lilli walk by herself, and then walk down steps by herself.

Little things are a big deal around here every single day. We take so much for granted. But Lilli helps remind us each day to not take anything for granted in life. Especially the "little" things.

Like walking down the steps.


P.S. I must add that I realize she does not match. She is wearing "make-shift pjs." (Christmas idea alert! Size 7!) The only fashionista around here is Chloe, the rest of us obviously don't think about it much.

Thursday, September 1, 2011

While Waiting for a Seizure


As I turned the calendar page to September tonight, I yelled out to Jasen, "No seizures at all in August!" I took out a blue marker and wrote "No seizures" on Lilli's seizure calendar that I keep on the fridge next to our regular calendar. I keep track of them for many reasons. It is important information when we are trying to figure out what could be setting them off or if we need to make changes in medicine, etc.
I am rejoicing because it has been over a year since she has gone this long without having a seizure. She has had some months with only a few, and other months with several each week. I thought about the odd practice we have of "waiting" for the next seizure. It is difficult to explain. Lilli has had them all of her life, and we always have to be prepared. We go by patterns and signs for when we think we should be "ready" for her to have a seizure. Some people can tell when they are going to have one. Lilli might be able to tell but she can't communicate that. We are always going on hunches and clues, like how she is acting, or things that happened that day that might bring on a seizure. Maybe it is a little like predicting the weather without all the fancy meteorology equipment.
One night in May I was "waiting for a seizure" and I felt like writing about it. I took a flashlight and a notebook, and wrote as I lay next to Lilli, who was sleeping, in the dark. This is what I wrote.
*****
May 15, 2011
It is a Sunday night. Lilli has had a seizure every Sunday for the past five Sundays in a row. Jasen is out at the kitchen table doing schoolwork. He got Lilli to sleep, but now I am watching her in case she has a seizure. She sleeps in our bedroom, hooked up to a machine called a pulse oximeter to monitor changes in her pulse and oxygen saturation. Sometimes the alarm goes off if there are changes and she is starting to have a seizure. But sometimes… it doesn't. So although it is helpful, it is not as good as old-fashioned mom and dad. We listen to hear the sound of her smacking her lips. That is how we know a seizure is starting. This sound does wake us up every time. We are well trained, after seven years. We are also light sleepers.
When Lilli has a seizure, we fly into action. The light goes on, one of us runs for the Diastat (emergency medication) and the phone in case we need to call 911. I time the seizure while we get the medicine ready. I have not had to call 911 since December, a 10 minute seizure. There was a time years ago when the seizures would not stop at all. We have been to the emergency room a lot with Lilli over the past seven years.
A lot.
Fortunately they have been stopping after several minutes for the past few months. Lilli has most of her seizures while she is sleeping. It makes our nights, well, not very restful, most of the time.
The chances of her having one tonight are pretty high, for several reasons. Even though it is late and I'm lying here in the dark near her, I cannot sleep. I think of all the things I could be doing right now instead of waiting for something to happen that might not happen. Re-folding all the laundry that Josh threw on the living room floor right before bedtime. Reading one of the many books I have stacked by my bedside that I would love to read but never get to. Is this healthy? I wonder. I already KNOW it's not "normal." But don't get me started on that word. Is this what firefighters or EMS feel like when they are on call? Waiting. Waiting for something bad that might happen, to happen. And making sure to be ready, in case it does.
One time I asked my husband if he thought it was accurate to describe waiting for her seizures like this: it's like sitting at the dinner table eating with your family, and you know that someone is going to choke on their food in the next twenty minutes. You sit there and try to enjoy your food, but really you can't because you are visualizing the Heimlich Maneuver in your mind, and making sure your chair is in a good position so you can get there fast when you leap up to help. You concentrate on watching your loved one chew food and swallow; relieved after each bite goes down. You can't pay full attention to the other family members at the table because you have to be ready for the second when the choking occurs. And you feel like this every time you have a meal.
When I told this scenario to Jasen, he slowly nodded, and said, "Yeah, actually, that is kind of what it feels like."
I look at Josh on the video baby monitor and see that he has no blanket. I go out into the kitchen quickly to ask Jasen something, then sneak into Josh and Chloe's room to cover up Josh. When I tip toe back into our room, I hear a sound and stop dead in my tracks. For a second I think it is Lilli smacking her lips, having a seizure. I stop breathing and listen with alarm. Then I realize: it's only the clock ticking in our bathroom. I just shake my head to myself, and climb back into bed for yet another long night.

 

Monday, August 29, 2011

Socks and Earthquakes

I have to laugh a little about this, in a "life is crazy" kind of way. Here the entire east coast has been focusing on earthquakes and hurricanes this past week, and I am distracted and delighted by the fact that Lilli is almost pulling up her own socks. But life is about the little stuff too. Lilli has taught me much about appreciating the little things in life.

Last week was our first full week, from 9 to 5:15 every day. With the ABA therapist, Lilli worked on sign language, typing the words "star" and "bus," pulling up her own socks and pants, and matching objects. She worked on new websites with the teacher, matching letters and typing short words. Pretty much everything is done "hand-over-hand" - we take her hand and make her hand do it with ours - with the hope that Lilli will eventually learn to do it herself.

It was a fantastic, exhausting, whirlwind of a week. Chloe started 4k, and Josh is, well he is just an 18 month old maniac. I adore Lilli's therapist that comes every day. Her homebound teacher is sweet and wonderful with Lilli. I am so excited about getting this much help for her. By Friday I was drained, but in a good way.

There was a time when I was worried about Lilli not getting what she needed in her education. There are so many factors in getting the right balance of everything for a child with special needs. Having Lilli learn at home is the right thing for her right now. But I could never do a good job by myself. I know what to do, but I need people to help me to do it. I have two other children who need my attention for much of the day. I spend time cooking every day just for Lilli's special diet. Potty training has been a very challenging ordeal so far. Lilli can do very little for herself. I cannot stress how very blessed we are to have ABA therapy in our home each day.

I think my favorite moment of this past week was when I was helping Lilli put her socks on at the end of the week. She had worked on it for days with the therapist. We put her sock on her foot for her, but then she has to reach down and grab it and pull it up. I put her sock on her foot and helped her position her hands around the top of the sock. She pulled it up herself and I cheered and clapped.

If you want to be humbled by how blessed you are to be a healthy, independent human being, come over and watch Lilli try to pull up her socks. We are blessed. When you put on your socks tomorrow morning, tell yourself, "I am blessed." Because you are. I told you, Lilli has taught me a lot.

By the way… I did not feel the earthquake, although a lot of people around here did. At the time, the therapist and I were getting Lilli ready to go outside to jump on the trampoline. We might have even been helping her to pull up her socks.


 


 


 

Monday, August 22, 2011

How to Greet a Child with Special Needs 101


Last week I took the kids and went to see my niece's new room at college. It was a risk. It was our last day before therapy began. I had to get us out of the house because it was 9 am and Josh was already trying to destroy something. I think he was beating on something with a wooden spoon and the banging made me decide to load them in the car and drive an hour away. When we arrived and started to walk across the lawn to the dorm, Lilli started to cry. She wailed all the way up the sidewalk, causing every head to turn in our direction. I pressed on, singing Twinkle Twinkle Little Star with no shame, to no avail. In the dorm, I took her on a walk down the hall to see if that would make her happy. She was so out of sorts. She just wanted to get out of there. Lilli is very upset by new situations, and we can't live our lives in a bubble (although I try sometimes.) So we have these experiences a lot when we go out in public. I am very used to stares. The sympathetic stares, the your-child-is-too-loud stares, the your-child-is-spoiled-and-should-be-punished stares, the what-is-wrong-with-her stares, and the why-are-your-torturing-your-child stares. I don't care about the stares. I focus on Lilli and I ignore them.

And then… here came the girl that made my day. A college-age girl slowly made her way down the hall with those metal crutches that have cuffs around the tops for arms. I don't know what to call them, I just knew instantly that this girl had a disability. She smiled sweetly at us as we got closer, despite the fact that Lilli was sobbing uncontrollably.

Then she did something that rarely happens to us. She looked right at Lilli and said –directly to Lilli- "What's your name?"

I did what I always do. I waited a beat, and then I looked at Lilli and said, "Say, 'My name's Lilli. I'm still learning to talk.'" I looked up at the girl and smiled. She smiled at me and looked right back at Lilli and said, "Lilli, that's a beautiful name!"

I looked at Lilli and squeezed her hand and said, "Did you hear that Lilli? She said you have a beautiful name!"

And Lilli smiled.

That simple, typical nice gesture from a stranger, meant the world to me. That girl "gets it." She knows what it's like to have people stare, or look away in discomfort, or not know what to do or say because they see her disability first and not her. She got it. So when she saw Lilli, she knew exactly what to do. And it blessed me so much.

I was inspired to write this post by a new very special friend of mine. She mentioned that people often ignore her child because she is in a wheelchair and does not talk. My goal is to help people know what to do when meeting kids who have special needs. It really is very simple. Focus on the person, not the disability.

I think of how different people have reacted when meeting Lilli for the first time. Many are unsure of how to interact with Lilli because she does not talk, and she does not always make eye contact. It really does make it difficult to try and hold a one-sided conversation with someone who does not talk back or look at you. But you never can tell what that child is thinking, how much he or she understands, and how aware they are of what goes on around them. This is a child, a real person with thoughts and feelings.

I know what it's like because before I had Lilli, I experienced that uncomfortable feeling myself from time to time around people with various disabilities. If you are not used to it, it can be overwhelming. You don't know what to do or say. So maybe you do and say nothing. Now that I have Lilli I know what's like to be the people who are stared at in the mall, or to have people make a big deal out of my other two children but act as if Lilli is invisible. It's tough. It hurts. Let me help you if you are ever in a situation where you interact with or meet a child with special needs.

Let's start with the negative and end with the positive. We have personally experienced the following negative interactions with both strangers and people we know:

Ignoring Lilli and talking to us as if she was not there

Staring at Lilli with looks of disgust, pity, or just obvious discomfort

Talking about Lilli in a negative way in front of her, as if she could not hear or understand

Talking to Lilli in a loud, you-don't-understand-very-well kind of voice

Not including Lilli in certain activities because they figure it won't matter to her anyway



We have experienced the following positive interactions with both strangers and people we know:

Getting down on Lilli's level to say hi to her and play with her

Talking directly to her in a way you would talk to any kid her age – complimenting her, etc

Praising Lilli's accomplishments to us in front of her so she can hear it

Giving Lilli thoughtful gifts and not being insulted when she pays no attention to it at the time

Getting hugged, kissed, drooled on or pulled on by Lilli and being a good sport about it


Every child is a gift from God. If a child's special needs or disability makes you feel uncomfortable, here is my cheesy, rhyming list of three things you can remember the next time you see that child:

  1. Forget the "rules."
  2. Get over the drool
  3. Talk about school
Forget the rules. What I mean by that is forget that some expert or some stupid assessment scored that child as having the mind of a six month old. There is no assessment that can tell you what is going on in the mind of a child who has autism or is non verbal. This is a valuable human being, with a personality, preferences, and a need for love and attention just like every other person on the planet.

Get over the drool. Um, some people let their dogs or even their cats lick their faces and share their ice cream cones with them. People have no problem with an animal's saliva but somehow another human being's drool is gross. If a child with special needs is drooling or doing something else that makes you feel uncomfortable you need to look at the person, not the drool, and get the heck over it. Look at the person, not the wheelchair. At this child, not the part of their body or face that does not "look quite right" to you. Look at the person, not the disability.

Talk about school. Can't think of what to say? Almost all kids go to school. That's an easy place to start. Where do they go? What grade are they in? Even though Lilli is homebound, she still has a teacher and school. If the child cannot talk, just include the parent in the conversation. Then you can make a comment to the child. Here is an example:

Visitor: "Oh, Lilli you are getting so big! What grade are you in now?" (looks at me for the response)
Me: "Lilli's in second grade now."
Visitor (looking right at Lilli) "Wow, a big second grader. You're really growing up. I hope you have a nice teacher this year!"
Compliments are easy too. They do not require a verbal response, and they make the child feel good and included in the visit.

It means a lot to Lilli, I know. I have seen it happen many times. If a person does not talk to Lilli or get down on her level, she will ignore them. They night as well be a piece of furniture in the room. But when people talk to Lilli, she might not look at them but I can tell she is listening. She will smile, laugh, and sometimes she puts her hand on her neck. It is a gesture I see when it seems like she wants to say something, but she knows she can't talk to get it out. Lilli loves to have people pay attention to her.

She can't talk, and she sometimes drools. But she is a beautiful, special little girl who deserves to be a part of the conversation just like everyone else.