Wednesday, July 24, 2013

Powerful Words About, and to the Flower Girl

After the ceremony in our hotel room.
 She did it! Happy girl.

My niece just got married. She asked Lilli and Chloe to be her flower girls, and Josh to be the ring bearer. What a beautiful wedding, and what a wonderful experience for my children.

How often do children with autism or cerebral palsy get to be flower girls in a wedding? I was not sure how Lilli would handle the job. Would she walk down the aisle? Would she hold a basket? Would she cry? I wondered.

My niece said, "She does not have to do anything. She does not even have to walk down the aisle if she doesn't want to. I just want her to wear a pretty dress and be a part of our wedding day."

Is that awesome or what? A pressure-free flower girl gig. Just wear the dress and look like a princess. If I never told my niece how cool she was about the whole thing, I'm telling her now.

More often these days, I try to let Lilli make her own decisions. She spent most of her non-verbal life having no say in anything at all. We picked out her clothes, chose her food, chose books and toys for her, picked movies for her, took her places we wanted to take her. We did not know what she wanted. We did not know how much she understood. We did not know she cared. She had no way to tell us. One of the biggest life lessons I have learned from Lilli is this: children with special needs should be be encouraged to make their own decisions, whenever it is appropriate. The simple reason why I do it is this: it makes her happy. People like to have choices. They like to have control. They like to make decisions, even if they are little decisions like "Which color shirt do you want to wear?" I did not do this a few years ago. It's hard to do this for a child that outwardly acts like she does not care. I am still learning to do this every day.

It is one of the driving forces behind why we strive each day to help Lilli to communicate, whether it is through an app on the ipad, a sound she makes, a sign, the yes no app on my phone, or some other way. We want to know what she thinks, and we want her to know that she has choices in life.

I wondered if letting Lilli decide for herself whether or not to be a flower girl would help her to be excited about it and, well, honestly I hoped it would help her handle it better if it was her choice to do it.

So I did what I thought any parent of a nine year old would do.

I asked her.

I explained to Lilli what a flower girl does. We were sitting at the kitchen table. She did not look at me or act at all like she was listening. She acted like she could have cared less. And she can't respond verbally with words. But still, I talked to her like I would have talked to any kid. Then I asked her with the ipad how she felt about it.

"Would you like to be a flower girl?" I put the ipad in front of her with the "Yes or No" buttons on her communication app.

She touched the "yes" button. I was satisfied. We have had this scenario many times now. I know she is listening. I know she wants to be a part of decisions. I know she understands.

We had many months to prepare her mentally for this new experience as a flower girl in a wedding. I was resolved to prepare her for this trip in every way possible. I was determined that this one would be different than the last wedding trip. And it was. I want to tell you about my favorite moment of Lilli at the wedding. But first I have to tell  you about why this trip made such an impression on me, and how very different it was than the trip we took two years ago. This wedding post became much more in depth than I had intended, so grab a cup of coffee, and learn from my parenting mistakes that I am willing to share with you.

Words About Our Children

Two years ago, we took almost the same exact trip for my nephew's wedding. I wrote a blog post about it when we returned, called "Autism and the Unattended Wedding." Unattended, because we took turns with Lilli and each of us missed large parts of it. Lilli missed it all, because she was so unexplainably upset. On that trip, we drove for two days, saw as much family on my husband's side as we could in three different destinations, and ended the week in yet another state with everyone in my family at my nephew's wedding. But things were completely different then with Lilli. She had her new ipad, but she did not communicate with it yet. We had not started asking her yes or no questions using the velcro cards or ipad yet. We did not give her many choices - actually, the only choice she really had were which movies she wanted to watch.We did not do a good job of preparing Lilli for the trip, because we assumed she did not understand or care. I had prepared myself, not Lilli. I'd hoped and prayed for the best - that she would not cry, not have seizures, not cause an embarrassing commotion. I was very stressed about Lilli, always anticipating a potential meltdown, worried that she would be anxious and upset in all the different places we went. I spent much of my time explaining to others about Lilli's behavior and special needs. Many times I talked about Lilli while she was right there in the room.  I am sure I probably told people right in front of Lilli, that she was easily upset and might not participate in certain activities. By speaking these predicitions in her hearing, I practically set Lilli up to be anxious and unsure in all the situations. This is a huge regret I have. I am still not sure what happened by the fountain at my nephew's wedding ceremony, but two years later I wonder if it would have helped to let Lilli have a say in what she wanted to wear, where she wanted to sit, and how we spoke to her and about her.

This is a mistake I have made as a parent of a non verbal child. But I think it is a mistake all parents make from time to time: talking about their children while they can hear what is being said about them. It depends on what you are saying, of course. But whatever words you say about your children, your children will hear and believe about themselves. Our pastor said that once in a message, and it stuck with me. It makes me think of words that others spoke about me as a child, many years ago - words I remember even now as an adult, both positive and negative. I'm sure anyone reading this can think of similar memories of words spoken by others long ago. Words are incredibly powerful, and they last over time. So parents should make sure that the words they speak about their children are encouraging, not critical. Predict success and express confidence in your children when speaking to others. Speak words of belief, love, and hope about your children, not criticism, disappointment, and doubt. If you believe and speak those things about your children, your children will hear and believe those things about themselves.

There are so many conversations I wish I could take back over the years, where I expressed doubt about Lilli's capabilities and understanding. I have made this mistake many times, but I try not to make it anymore. Being the parent of a child with autism, this is something I have had to figure out the hard way. Seeing how Lilli's little sister reacts to my words has helped me.

I now notice that Chloe always listens to hear what I am saying about her to others. She runs into the room and questions me.

"Mommy, what did you just say about me? Why did you say that?"

I realize that Lilli listens too, but she never acts like she is listening. Her body language usually displays indifference. I now realize that she has excellent hearing, and she has heard every word we have spoken in her presence for her entire life. Scary, because that includes all the professionals who have spoken about Lilli in front of her over the years. Some spoke in encouraging, loving ways, but many have spoken things that Lilli never should have heard. I have experienced several conversations where teachers or therapists spoke about Lilli with words that never should have been said in her hearing. This is really something to remember for everyone who has children or works with children, especially children with special needs. Parents, teachers, babysitters, therapists who work with non verbal children with autism, please be mindful of how you speak in front of these children. You do not know how much they understand. It is always better to assume that they can hear and understand, even if they do not act like it.

When I look back two years to the last wedding, I see how far we have come. Yes, Lilli has come a long way. But I'm talking more about us. Her parents. We have learned and grown. When I compare the two wedding trips, something about this one we just took seemed easier. Better. I know the kids are older and that is part of it. But there was something else. I really thought about it, and reflected on the differences. There were similarities, such as how awesome our extended family was in so many ways, helping us and helping our children.

But the big difference was really how Jasen and I treated her. How we talked to her, and about her to others. And because of that, it made a difference in Lilli. Because Jasen and I now realize more about who Lilli is, that she is smart, and that she understands and hears everything.

The Second Wedding Trip

I think any parents out there will agree, a happy trip with three young children is something to be very thankful for. Everyone was just happy the entire trip. We had a great time with everyone we saw. We didn't have any major mishaps, like a flat tire. We didn't even forget anything or lose anything. Really, it was probably a small miracle that the trip went so well. It was just a happy time of seeing loved ones and celebrating a new marriage. But I think the fact that Lilli was happy the entire trip was a huge difference from the last trip.

It was the little things that made this difference. On this trip, I noticed that we encouraged her more. We sought to build her up and compliment her. We believed in her more, and gave her the benefit of the doubt when we could not figure out what she was trying to tell us. We asked her questions a lot, and respected her answers.

I think we focused on her more in an older, "she's a big girl" way on this trip, which takes effort because she can become easily unnoticed in the corner for long periods of time- especially if she has an iphone with youtube. We all talked to her (including Chloe), not at her or about her. I love that most of our family members do this too. It takes a lot of effort to try and talk to a non verbal autistic child that seems to ignore you. Words spoken to and about Lilli are important to me, because I know now that she is listening.

I overheard Jasen telling family members how smart Lilli is, that she just took a standardized math test at school with her ipad and did very well on it. Lilli heard him too. I heard Jasen sweetly explain to a couisn, "You can talk to Lilli just like you talk to Chloe. She might not talk back, but she understands everything you say. She's smart and she likes it when people talk to her." I looked across the room just in time to see Lilli smile to herself. I knew she was happy he'd said that about her.

We'd not said anything like that two years ago, because we did not know it. Our view of Lilli has changed.

We spent a lot more time on this trip explaining things to Lilli in advance. We tried to prepare her mentally, and answer any questions she might have, even though she could not verbalize them. It is sort of an odd thing, to talk to someone who can't ever talk to you. It's not like talking to a baby. Lilli is nine years old, so you have to talk to her like a nine year old. Otherwise it is condescending and insulting to her. It's part imagination, part courteousy, part love. Chloe can ask us tons of questions, but Lilli can't. And she gets anxious. I would be anxious too if I did not know what to expect, and if I was not able to ask my questions. Wouldn't you? I have to try and think of what nine year old things Lilli might want to ask us or tell us, and talk to her about those things.

When we drove to my brother's house to have Lilli and Chloe try on their flower girl dresses, we explained to Lilli that she was going to try on her new pretty dress to make sure it fit. We told her that she was going to look beautiful, and we could not wait to see her in it. When we put the dress on her, everyone ooohed and aaahed. My nieces told her she looked beautiful. My sister in law told her she looked like a princess. My brother played Legos with her and talked to her. All the cousins paid attention to her. I saw Lilli smile to herself multiple times, and I knew she was very happy about that dress. But mostly I think it was because everyone made a big deal out of her being a flower girl. It was really sweet.

At the rehearsal, our family and the people from the church were amazing. They asked what they could do for Lilli, if there was anything the church could have to help her feel more comfortable. I loved when others complimented her and paid attention to her. I did not feel anxious at all, and I think our calmness helped her stay calm. We encouraged her and walked her through it all.

At the wedding, we tied a little sprig of flowers at the top of her dress so she would not have to try and hold anything. Right before she was supposed to walk down the aisle, she got a little anxious. Jasen held her and softly sang the Veggie Tales theme in her ear. We told her she looked beautiful and that we knew she could do this. When it came time, she did it. My nephew walked with Lilli and Chloe, while Jasen and I raced up the side to the front to meet her when she got there. Halfway down the aisle, she buried her face in my nephew's side and stopped. She looked around with an anxious look on her face. (Probably thinking, "there are so many people looking at me!") He gently encouraged her and put his arm around her, and she kept going. She made it to the front! We were so proud of all of our children. But I was really proud of Lilli for walking up the aisle in front of everyone. Chloe and Josh soaked up all the attention. But it was a very big deal for Lilli to walk down the aisle with people watching her.

A Special Moment at the Reception

I have seen a lot of pictures from the trip so far, but there is one picture from the wedding that I am waiting for. At this wedding, my nephew and his wife were the professional wedding photographers. There was this one moment at the wedding reception, one memory of my children. It might be the most meaningful moment of the entire trip to me, and my nephew snapped a picture of it. In this one moment, I have a bundle of a thousand feelings wrapped up together in my heart.

Two years ago, we could not get Lilli to even enter the room where the reception was at my nephew's wedding. She was so upset the entire time. She had even cried while we had our family pictures taken. This reception was just as loud and crazy as the one two years ago. But something was different about Lilli, and something was different about Jasen and me. We took her right into the reception room and found our seats. She held my iphone and watched her favorite YouTube clips. She sat quietly at the table and did not try to escape the room. I realized Josh and Chloe were missing, so I ran out into the hall and found them lined up with the whole wedding party.

When I saw everyone lined up, it dawned on me what they were getting ready to do. I looked at the bride and groom at the back of the line with Chloe and Josh.

"Oh! Are you going to be introduced? Do you want Lilli out here too?" I asked them.

"Yes, if you think she'll do it!" They answered. "Just tell the DJ her name!"

Oh, she's gonna do it, I thought, as I ran back in determined to get her. I wove through people and shouted the information over the loud music and happy chaos to Jasen. He quickly took the iphone out of Lilli's hands and scooped her up to take her out in the hallway.

As each couple edged closer to the doorway to be annouced, I looked at Lilli. She had both of her hands over her face and looked like she was about to cry. The music was booming, and we could hear cheers erupt from inside the reception room each time the double doors opened and another bridesmaid and groomsman entered onto the dance floor. Then the doors would shut and the sound would be muffled as we moved up in line. Josh and Chloe were bouncing around smiling with confused excitement. They had no idea what was happening, but they were having a blast. I took Chloe and Lilli together and stooped down face to face with them.

"Ok listen, Lilli, you can do this. All you have to do is walk into the room. They are just going to say your name and everyone is going to clap and cheer for you, it's going to be great! You don't have to do anything except walk in the room! Don't be nervous, you look beautiful, I'm so proud of you and I know you can do this with Chloe and Josh."

I looked at Chloe. "Chloe, can you hold Lilli's hand? Or hold her arm, you know how she doesn't always like her hands to be touched. Can you hold her wrist gently and walk with her and Joshie into the room when they open the doors? Do you think you can do that?" Chloe nodded seriously and said "Yes, mom! I can do that!"

I looked back at Lilli and confidently told her, "Chloe will help you, Lilli. Hold onto Chloe, and you'll be fine. You'll be great!" I smiled and realized that I genuinely believed Lilli could do it, and I hoped she would try. It was important that she try. I did not want to leave her in the corner, watching youtube on my iphone. She might not act like she cared, but I believed this would be an important moment for her.

Later I thought about how two years ago, I would have just given up and said to someone else nearby, "She can't do this." And I would have taken her outside, alone, and felt sorry for myself and her as we distanced ourselves from the loud music. This is what I mean when I say that Jasen and I have grown.

We inched closer to the doors, and I said to the woman who was opening and closing them, "I'm going to coax them into the room and then slip out of the way." I positioned them together. She opened the doors, and I gave them all a little encouraging tap. "OK go go go!" and off they went.

And this was the moment that I hope was captured by my nephew's camera: the moment all three of my children walked into the reception by themselves to be introduced.

Maybe to some, it would not make much sense as to why this particular moment meant the most to me of the entire week. But to me, silly mom who has tears even now as I write this, it just made me so proud. Lilli was included. All three of my children were arm in arm, linked together, doing what they were supposed to do. And Jasen and I had encouraged her to do it. We did not whisk her away and assume she could not handle it. We did not take the easy way out and keep her in the corner with the iphone, away from the chaos.

I had become so accustomed to avoiding potential meltdowns. I knew this moment had the potential for Lilli to stop and crumble into a crying heap with her hands over her ears. But I was so confident that she could do it. I wanted her to do this and enjoy being cheered for in her princessy flower girl dress. I think all children can tell a lot about what grown ups think. They can tell deep down if we believe in them...or don't believe in them. And that can really make the difference in whether or not they try things.

Lilli walked with her siblings into that music-booming, crazy, filled-with-people-and-dj-lights-swirling-reception room, and she did not stop or cry. She held onto her sister and trusted her, and she walked through the doors. She might have been nervous, and she might not be smiling in the picture. But she didn't cry, and I know that took so much concentration and effort from her to do something so overwhelming. A flower girl gets a lot of attention. I wanted her to be cheered for just like Chloe. I knew she could do it.

And she did.

The three of them walked over to the dance floor together as everyone cheered. I looked at my nephew, who had just taken a picture of them, and I said, "They did it!"

It was more than just my three children walking into a reception to be annouced as ring bearer and flower girls. It was more than the fact that none of them cried, and they followed directions in front of that large, cheering reception party. I often see things in a symbolic way. It was just once again that picture imprinted on my heart of my three children, linked together, walking forward side by side in life. That despite Lilli's differences and disability, she held on to her sister and did her best. I hope and pray that they will all grow up loving each other deeply, and helping each other selflessly. I see Chloe's heart already, as she has come to understand that her sister has "special needs." Chloe has moved past the questioning, frustrated with her sister stage, and become a wise, helpful, loving and supportive sister.

I was proud of Chloe, for lovingly guiding her sister, complimenting her, and encouraging her so many times on this trip.

I was so thankful for all of the people who made a big deal out of Lilli and overcame the awkwardness to either pick her up or hug her or talk to her. I was so thankful that my niece asked Lilli to be in her wedding. I am thrilled that my nephew took a picture of one of my favorite moments.

I was grateful to see how simple encouragment spoken directly to Lilli from Jasen and me helped Lilli time and time again throughout this trip.

And I was so very proud of Lilli, for being an awesome, happy, beautiful flower girl. 

This is right after the ceremony. Most people know now that when Lilli puts her hand on her neck like this, she is "saying" something, but the words just won't come out. What do you suppose she is saying here? 

Friday, July 12, 2013

Why I Appreciated "Chick-fil-A Cow Appreciation Day"

Our day began with Chloe spinning too much in Lilli's therapy swing, crying, and throwing up from being dizzy. Then some sibling fighting, a messy breakfast, some potty training issues with Josh, and cleaning up all of that. Two baths later, we were back on track. Just another typical day here. Except that today, in this house that's usually filled with therapists working with two of my children, there was one highlight we were all looking forward to:

Cow Appreciation Day at Chick-fil-A.

We had plans to meet friends there for lunch for this fun annual event where everyone dresses up like a cow. I looked at the clock and figured we would need about an hour and a half to get all three kids and myself dressed like cows and out the door to Chick-fil-A.

I was wrong, it took two and a half hours. No helpers for Lilli here today. I explained multiple times to Josh that we were not dressing up like Spiderman to go to Chick-fil-A, we were going as cows, for Cow Day. We went through several Spiderman and cow outfit changes. Chloe cut out black spots and tails, and I dug up white clothes and made ears. Lilli was quiet and tolerated me dressing her in a white outfit and sticking spots on her. Finally, we were driving down the road covered in black construction paper spots with "Eat More Chikin" signs taped on our shirts and floppy black paper ears and tails. I took care to tape a barrette with cow ears on top of Lilli's head because headbands bother her.

When we pulled into the completely full parking lot, I was relieved to see one available handicapped parking spot for Lilli right next to the door. I parked and picked up the phone to call my friend. She is a new friend. She does not know us very well, and I knew I would need help getting these three inside. She answered her cell phone, and she was just telling me that they had saved seats for us when I glanced at Lilli in the rear view mirror.

She was having a seizure.

"Lilli's having a seizure, I gotta go!" I yelled into the phone and dropped it. I climbed back into the back of the van to her. Chloe covered her face with her hands, upset.  "This is terrible!" she said over and over as I tried to stay calm and tell all three kids that everything was going to be OK. Even though I was panicking inside, and I didn't really KNOW that everything was going to be OK. "Here, call Daddy," I said to Chloe. "I don't know how!" she wailed. I hit Jasen's number and handed her the phone. This was a mistake, because Chloe did not have the phone right on her ear. She kept saying, "Lilli's having a seizure, this is terrible" but she could not hear Jasen. I had to take the phone from her and tell him what was happening.

Even Josh was scared, I think because Chloe was saying over and over, "Lilli's having a seizure!" Josh started to say it too, yelling "Mommy, mommy!" Fortunately they were all still strapped in their car seats, so I didn't have to keep my eye on them as I pulled Lilli out and helped her.

She came out of the seizure, and I started to breathe again.

Now what? I wanted to get back in the driver's seat and drive back home. So many times I have been through this. It never gets easier. It is always just as shocking and scary. Just then my cell phone rang. It was my new friend. She had not heard me say that Lilli was having a seizure, because it was so loud and crazy inside Chick-fil-A  They were just sitting inside waiting for us. I explained that Lilli had a seizure, and she said she'd be right out to help. I told her we might not stay. I had to get my bearings because I was so overwhelmed. I gave Lilli a drink of water and she choked on it, coughing and sputtering.

"Wipe her mouth, mommy!" Chloe sat and watched her drooling sister with concern. I looked at Josh, who was still upset, and I said calmly, "Lilli is OK, we are all OK. Ok?" I fixed my headband with floppy black ears, and grabbed my cowbell. A bunch of black paper spots had fallen off of me onto the van floor when I was helping Lilli. I scooped a few up and slapped them back onto my white makeshift cow outfit. Really I did not even want to go in. My friend came out to the van and helped take Chloe and Josh by the hand to go inside.

When we got to the counter to order, I could not even think. Lilli was probably not feeling that great, and she was crying and shrieking with anger. After one ear-piercing scream, I heard a person nearby mutter, "Whoa." I know. It's loud. I'm sorry. I do not know what to do for her when she gets like that, except either leave, or push through it and hope and pray she gets happy again.

I had given her my phone to watch her favorite YouTube videos, and Youtube would not work. The sweet girl at the cash register was patiently trying to take my order between shrieks, and I said, distractedly, "Hi, um, ok, it's me... and three small cows. We'll take...whatever you want to give us." She laughed and nicely tried to help me through our order. If she only knew why I was acting so weird. I did not tell her that Lilli had special needs, but I'll bet she could tell something was up. My friend took Josh and Chloe back to the table, and I tried to balance the full tray and hold Lilli's hand. Lilli reached around in anger, shrieked, and grabbed the side of the tray, almost spilling it. I kept taking deep breaths. This was hard.

We got to the table, and Lilli was still upset. Finally I gave up on having them eat anything, and took all three of them into the play area. As soon as we did that, Lilli was happy. She loves being around other kids. She did not even climb up into the tunnel, she stood at the bottom and flapped her arms happily with a smile. I saw another mom I knew and we chatted a little. I kept trying to ignore the feeling of wanting to bolt out of there. The kids were having fun, while our food got cold on the table. I never even took one bite.

I realized suddenly with the instinct that only the mom of a potty training toddler has, that Josh needed to go to the potty, NOW. Or there would be trouble in the Chick-fil-A tunnel. I took Josh and Lilli by the hands and told Chloe to stay with my friend, we'd be right back. As I tried to steer the kids through the crowded restaurant, another friend I didn't even know was there popped up from a table and offered to take Lilli for me. What perfect timing.

When Josh and I got into the bathroom, my emotions threatened to overtake my mask of calmness. I felt the tears coming up, and had a thought that might have ruined it all: Lord, why did you give me these dear needy children? I'm not very good at this. And then this thought: Stop it. Get back out there.

So another deep breath, and back out we went. The kids played for a little while longer. I thanked my two friends for helping me, and saw the other mom I'd chatted with earlier. I told them all, "This is hard. I almost didn't come in because Lilli had a seizure in the van when we pulled in." The one mom hugged me, and said, "You're amazing. Bless you, you're a good mom. I can't believe you came in." My friend said, "You did it! You got through it, you came inside with your kids after Lilli had a seizure. Good job, you can go home and write down that you did that." (and I did.) My new friend that we'd sat with packed up all of our uneaten food in a bag and said, "You did the right thing. The kids had fun." She carried the food and my other friend carried Josh.  They helped us all out the door back into our van.

As I drove away from that experience with the free Chick-fil-A food we would heat up and eat later, I had one thought: I don't want much in life, just a little help from nice people. Cause life can be tiring and hard, but when you have people help you along the way, it's more bearable. Friends and family can make you smile through the craziness and tough times. And I know why Chick-fil-A just gave away all those meals to customers dressed like cows. They are just being nice. It was simple kindness.

When people are nice and help me, it reminds me that a little tiny bit of being nice and helpful goes a long, long way. The people that helped me today made my day. The nice girl at Chick-fil-A that sweetly placed my order and said "My pleasure" with a smile, despite my confusing order while my daughter with special needs had a meltdown, made my day. Kindness is worth way more than any chicken sandwich.

Thank you, kind friends, and thank you, Chick-fil-A. Just for being nice. I appreciated it.