Five Minutes on Saturday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She reached out through the window and touched me.

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

Twenty five.

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

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

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

And I felt overwhelmingly blessed.

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

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

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

But it is not a burden.

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

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

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

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

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

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

Shopping, Crying, and Awkward Questions

Another happy trip to the grocery store. 

"Those who have conquered their problems are more secure than those who have never faced them."

I heard this quote by Dr. Dobson on the radio, and it made me think of Lilli.

We have been working for many months on facing something she loves and hates at the same time:

Shopping.

Lilli is conflicted because she loves clothes and accessories, and she loves having money to pick out new things. She now makes choices by tapping items or handing them to us, or sometimes holding it and kissing us. Or kissing the item iteself. (That's an obvious "I want this.") But the actual shopping part is often very difficult for her. Especially if the trip is not about her.

Shopping is not always predictable. Sometimes I try to make it somewhat structured. As in, "Lilli, I need to get milk, eggs, and bread and that's it." But most shopping trips are not like that. Most of our outings are for groceries, to the library, or to a specific store for something we need. There are many unpredictable circumstances, such as long lines or crowds, and the stores are never exactly the same. Stores change their displays constantly. The music is always different. Sometimes the lighting is different. The checkout line is not always the same line. The people in the store are not always the same people. Usually, I think of something else I forgot I needed, and there goes my "promised" short list. Often, I walk by something I want to take a closer look at, and again, the plan changes. Children with autism like things to be the SAME. Shopping is rarely the same experience each time.

In the past few years, we have had a few very wonderful shopping trips where Lilli was happy, made choices, and we all came out the exit doors with smiles and sighs of relief.

But those trips were rare.

Lilli has cried very loudly in pretty much every store I've ever taken her. For different reasons, I suppose. In the heat of the moment, I can't always figure it out. Sometimes later I realize, oh, she had to go to the bathroom and she could not tell me. Or, oh, she probably didn't like the smell of that place. Or the loud music. Maybe she saw something she wished she could have and was not able to express it to me. Or she is unnerved by the overstimulating aisles and trying not to trip as she navigates around endcap displays. Or some other reason. Maybe she just plain hates being there and just wants to leave. Who knows? It almost always has to do with her not being able to tell us something. It is such a frustrating mystery. I constantly question everything, as in, "Does she really HATE Old Navy in general? Or does she just hate the shoes I made her try on?" I have no idea. We have not been back there since a loud crying melt-down last spring.

Her crying really rattles me. I just want to be able to know why, so I can help her. I can't focus if she is crying. If Josh or Chloe are crying, I can often ignore it because I know why they are crying. (I want that super expensive toy, she's looking at me funny, he touched me...etc.) I just cannot do that with Lilli. And unfortunately, when she is crying, she is not usually up for touching buttons on a communication device to tell us why.

Lilli draws attention in public places by her unsteady gait, loud squeals, and frequent loud crying. When she was younger - from ages three to six - she licked the handles of shopping carts and metal hand railings if I didn't catch her in time. (It only happens rarely now). She will grab any stranger's hand or arm as we walk by them. She will run up to a strange man and try to climb up him for hugs and kisses.

I can handle staring, I really can. I can even handle awkward and ignorant questions (more about that later) but I just cannot handle Lilli sobbing loudly in a store. So for a long time, I tried to avoid taking Lilli out in public places. It was easier to stay home and avoid this problem. I tried to grocery shop at night, when Jasen was home. I used the reserve online/drive through pick up service at the library.  But I knew if we didn't face this going out in public problem, it would never get any better. So I asked Morgan, Lilli's ABA therapist, if she would help us be able to go out in public and somehow make our trips better, more positive experiences.

I remember we went to Hobby Lobby one time in the spring, and by the time we left, Lilli was just wailing. And I was completely frazzled. Morgan, was with us. We had all three of the children. "That really wasn't so bad," Morgan commented positively as we helped the kids into the minivan. I tried to look at it from her perspective, but I all could see was mine. Nine years of shopping experiences with a special needs child had worn out my positive view.

Morgan came up with a therapy plan, and for many months now she has been helping Lilli to try and calm herself when we are in a shopping situation that is really upsetting her. Unfortunately, in order to learn to do this, we actually have to go out shopping. We are getting through it, but it is challenging. Sometimes it goes great! Sometimes it is a "hurry up and let's get what we need and check out" kind of trip. This is not unheard of from time to time for any mom with young children. It's just that in Lilli's case, the whole experience is called therapy. It is different. I cannot treat Lilli the same way I treat Josh and Chloe. Lilli needs to be taught basic things and practice coping skills that come naturally to most people.

Others might think, well, why can't you just let Lilli develop at her own pace? Give her space, enjoy her. She'll be fine. You worry too much. My kids hate shopping too.

If Jasen and I had that attitude, she would never have walked at age three. We pushed her to learn to walk. It was not a sweet, happy, she-did-it-on-her-own-experience. She probably would still be eating puree baby food right now if we had not done years of feeding therapy. Every "simple" milestone in life that typically developing children do naturally, is complicated, hard work for Lilli. If we had a sit back and wait until outings get better attitude, we would just never leave the house. I can't wait until she might get better at leaving the house when she's twenty five...maybe...to go to the grocery store. If I want things to get better, we must work on it and face the problem together right now.

Morgan came up with a plan for how to increase Lilli's tolerance of certain places, which included setting a timer on her phone and rewarding Lilli with Youtube clips every minute or so. She gradually increased the amount of time between Youtube clips. She talked with Lilli about "waiting." She has been teaching Lilli to "wait" by counting, or setting a timer, and using Youtube as a motivator. It has really helped.

Recently at TJ Max, I was making a return. As I pulled out my receipt, the store employee nodded at Lilli (who was crying loudly) and asked me, "What's wrong with her?"

I loathe that question.

I could not ignore this employee, as she was taking my return. Otherwise I might have said something short and to the point, and walked away. This was a conversation I was not up for at the moment, as Lilli was very upset and I had Josh and Chloe with me too. Morgan was standing next to Lilli, quietly counting in her ear to teach her to wait in line with me without crying or running away. This is therapy, and it is not easy for any of us.

"She has special needs," I answered blandly. I was already unnerved by Lilli's crying. Now this.

"Special needs? What kind of special needs?" she asked as she peered curiously around me at my sobbing nine year old.

"Um..." (here we go) "...she has autism, and it's really hard for her to go to stores."

"Why?" she pressed.

"Uh... I don't know, it's all kind of overwhelming for her I guess. Can I just get cash back or do I get store credit?"

"What is 'autism'? What does that mean? Does she talk? Why is she so upset?

"Uh..it's...well, it's, umm," I glanced back at them, and the growing line of people behind us. "No, she doesn't talk...look, we don't have a lot of time, she does not like it here." Lilli was crying, nose running and all with everyone in line looking at her, while Morgan tried to help her calm herself. I really didn't feel like taking the time to educate this woman at this particular moment. Couldn't she just Google "autism" later?

"Oh. How many children do you have?" She pressed, oblivious to my wanting to get this over with and go.

"Three."

"Oh...that's not your daughter?" (pointing to Morgan).

"No... that's my daughter's therapist." Wow, that made me feel old.

"Therapist? What kind of therapist? Why does she need a therapist?"

"To, uh, help her with her special needs." (I am now fumbling in my purse glancing at Chloe and Josh, trying to act like I really needed this transaction to be OVER.)

"Oh. So you have three children...and are you pregnant?" She pointed at my stomach. I froze and rewound in my mind what she had just asked me.

"Nope. Not pregnant." Really? My goodness, woman.  "So, I can just use the store credit whenever I want to, right, OK thanks we really have to go now." I held out my hand and practically grabbed the gift card she was still holding as she pondered our situation, perplexed about the fact that we had a "therapist" with us and that I wasn't pregnant.

Some people are really like this out in public. I can't make this stuff up. You might wonder why I did not tell this woman off and embarrass her. She did not anger me, she was just ignorant. You can't get angry at ignorant people. They just do not know any better. And as far as my missing an opportunity to educate her about autism, I'm barely hanging on here trying to stay calm and do this one task without losing my temper or crying or giving up and leaving the return in the back of my closet for five years until I end up donating it. I'm just not always up for explaining our lives to strangers. It depends on the person and the situation.

On a positive note, there are usually more helpful, kind people then there are rude, inquisitive people out in public. I have had countless experiences of complete strangers offering to help me in some way. It really is wonderful when strangers offer to help. A few weeks ago I had a woman come by and see that I was kind of stuck with the kids and the cart, and she sweetly said, "Oh, do you need any help?" It is always nice when strangers notice and show simple kindness, without prying and asking all kinds of questions about why my children are the way they are.

Since the Old Navy melt-down experience last spring, Morgan has been helping Lilli to tolerate trips to the grocery store and other stores. Our trips are getting better. Some places are still hard, but some have improved immensely. I'm not asking for every outing to be a great experience, I just want it to merely be tolerable and safe. Tolerable to me means no one is sobbing or shrieking angrily at high decibles, running away, or breaking anything. Safe to me means no one licks the grocery cart or gets hurt, and I have the same amount of little people with me when I walk out the door as I had when I originally walked in. (I'm including all three of my children in these descriptions.)

Please note that I did not say anything about getting all the items on my list  - or any items at all, for that matter.

I told Morgan we needed to work on being able to go to the library, because I take the kids there at least once a week. At first, it was hard. I hated it. Lilli hated it. She would cry loudly, and everyone in the whole library probably hated it too. Some looked at us with sympathy. Some looked at us with annoyance. Thankfully, some did not look at us at all. I know it probably was nuts to work on going to the quiet library for this goal, but besides the grocery store, it is the most important place for me to be able to take my children. Lilli watched Youtube clips on mute. Morgan increased the amount of time over the weeks and months. Soon, Lilli began to last longer, and feel ok about being in the library. Now, amazingly, we can actually go to the library to pick out books. Ironically, the loudest children are now Josh and Chloe, who are still working on whispering.

I have increased confidence about taking my kids out alone, which I did not have before. This is how I grocery shop without the ABA therapist:

It's not ideal, but it's the best I've come up with for trips by myself. See, the people who came up with this blue truck cart are my heroes. It's for three kids! I can keep all my children in one safe place, and they are all relatively happy - or at least ok - in this picture. It is a back-breaker, getting Lilli in and out with her long legs, but we can do it. See? There's food in that cart. Only reason I took a second to take a picture is because they all looked so cute and the woman at the deli counter was taking forever.

Recently, we all went shopping because I had to get a shower curtain. Morgan was with us. And guess what? Lilli was the best behaved, happiest kid of all three. While Josh tried to climb out of the cart and wailed about wanting a Mater pillow he saw, Lilli was happy, and amazing. She laughed, hugged strangers, and walked with us. Once while we were looking at bathroom stuff, I watched her select a shower curtain and carefully slide it off the shelf, hold it, and look at it. Just like any nine year old, shopping with her mom. It made me smile.

She is learning that shopping is always different, but that's OK. We don't have to love every shopping trip, but we can do it without sobbing.

I have Morgan alone to thank for this. Some shopping trips are more expensive than I'd like them to be, but the fact that I can take Lilli with me and have her actually be happy....that is priceless.

Dishes Go in the Sink

When you have several young children, your house constantly looks like either a mini tornado just came through, or wild animals live there. I have found that teaching several young children to clean up after themselves and do chores is extremely challenging.

I think about cleaning up a lot. This is mostly because Lilli and Josh have therapists coming over almost every single day. Today there are five people coming.  Two ABA therapists (the line therapist and the lead therapist) and the ABA therapy coordinator for Lilli, and a service coordinator and an occupational therapist for Josh. Yesterday we had the homebound teacher, the speech therapist, the ABA therapist, and a personal care coordinator. We dearly love all of these people who help our children so much. I love that they come to us and we do not have to spend hours each week in the car or in a waiting room. They step over toys, ignore the mess in my kitchen, and use the messy bathroom without saying a word. I know they are here to help my children, not judge my housekeeping.

But I cringe from time to time.

This is my most common thought every morning as I sip my coffee: Who is coming today. Shoot, I should clean the bathroom.

Then I calmly scan the living room and kitchen disaster areas, and try to decide if I care. Many days, I don't care. I let it go. We live here. I cook a lot. My kids play with toys. We all use the bathroom. This is reality.

But sometimes I can't just let it go. If you are not used to having people come to your house almost every day, try to imagine how it feels. I assume that some of you reading this probably spend time cleaning up your house when you have company coming. Ever have someone drop by unexpectedly and you are just mortified at the messy state of your bathroom? You can only hope that there is toilet paper in there, and that no one left any undergarments in the corner on the floor. Your guest is lucky if there's a hand towel to dry their hands with that's not all wet and bunched up on the counter. Let's not even discuss children remembering to flush. Yep, well, that happens here several times a week. We have two children potty training and learning to wash their hands all day. I would pretty much have to clean the bathroom multiple times every day, to act like no one lives here and it is always clean like that. 

Mostly it's not about what other people think of me and my house cleanliness. It's about me being able to stand living here.  I don't play with Legos, and I do not want to step on them. And we have wicked, pointy Legos that look like grass and fire - those really hurt.

It is very important to me to teach my children how to help clean up. I long for the day in the future when they will clean up everything  - even the bathroom! But the process is so slow, some days I can't stand it.

The Clean Up Song

Cleaning up starts small. At first you are patiently showing a toddler how to put a few blocks into a container. You clap and cheer wildly to show them how "great" and "fun" cleaning up can truly be. Then you teach them some silly "clean up" song, and force yourself to chant it in a chipper way while crawling around cleaning up almost all the toys yourself. Your toddler puts a total of two toys back, commenting and playing with each one for a few more minutes.

Somewhere during the sing-songy-"cleaning up is FUN!" phase, the urge to thrust all the toys into huge black garbage bags and throw them out in the garage might cross my mind.

Right now this is what "cleaning up" looks like at our house:

Josh chants the clean up song: "Mean up, mean up, eb-by bady mean up!" While continuing to play with the toys. 

Chloe makes a mad dash off to her room, roots through her dress up stash (meanwhile making yet another mess throwing the dress up clothes all over her floor) and puts on a Cinderella outfit and apron - the "before the ball" Cinderella outfit. Then she has to have her hair a certain way... the right shoes...Mommy please button the back of my dress...and she grabs a broom, because a broom is essential to play the part, even if we are picking up Legos. Dancing with the broomstick in a Cinderella type way begins, with lots of dress swirling and a touch of The Little Mermaid song "Ah ah ahhh..." or some other Disney princess song. And oh, cleaning up? Thought we were putting on a play. What was I supposed to do again Mommy?

This is really consistently true.

This is her idea of the "before the ball" Cinderella outfit. And I did not take this picture specifically for this post. I took it on a random day a few months ago. We must have been cleaning up something in the garage.

And then, there is Lilli. She stands in the middle of it all, and does not begin to move in any clean-up-kind-of-way.

She hears my frustrated cries of "Clean up these toys right now or I am going to suck them up with the vacuum cleaner! SQUINKIES AND ALL!" (anyone who knows what a "Squinky" is can surely relate.) She puts her hand on her neck and smiles. I really love that Lilli gets my sense of humor. She might ignore me in other ways, but whenever I crack a joke for her benefit, I am blessed with a smile, or a giggle from the next room. (The Squinkies belong to Chloe, so I guess Lilli thinks this is funny.)

Lilli is completely aware of the clean-up chaos swirling around her. But she does not run around and help me clean up the toys. We discuss this issue often, and I even went so far as to actually explain to Lilli that we are working on initiation and follow-through with her. As I've said before, I choose to give her the benefit of the doubt. Call me crazy, but if she is smart enough to do math problems and take social studies tests, she can learn the meaning of the word "initiate." And maybe it will get her thinking about what to do with her body when I ask her to clean up.

Lilli is still in the beginning stage of learning to put the Legos back in the bin, and we have to sit next to her and help her complete the job. She gets off task easily. She has trouble initiating and following through. We can't tell her what to do and then leave the room. We have to take her hand and help her put one Lego at a time in the container. That's not really helpful to me most of the time when the place is a wreck and I need everyone to pitch in and help in a big way, fast.

So I am so pleased and proud to brag that Lilli has learned to pick her dish up after a meal, and put it in the sink. Thanks to her patient, fabulous, persistent ABA therapist. She is also learning to throw away her napkin in the trash. Now, it's not perfect. But I don't care. She does hold the dish high over the sink and "drop" it in there with a loud crash. (Here is my plug for awesome Correll dishes that do not break very easily. And rubber mats to line the bottom of the sink) She got mixed up last week and tried to put her napkin in the sink and the plate in the trash. Usually she gets so eager to complete this chore, she picks the plate up halfway through the meal and tries to get up to go put it in the sink while there's still a lot of food on it. Recently, she has wandered into the kitchen and scooped up any dishes at all that are on the counter - including clean ones - and thrown them into the sink.  But the habit has been formed, and that's the important part. She's getting it.

   

I have realized that the emotion that welled up in me on the day of Chloe's kindergarten graduation, is the same emotion I have when Lilli learns to do something. What kind of crazy mom gets choked up when their kid puts a dish in the sink?

Me.

It happened to me the other day. I realized she did it without me even saying anything to her. She finished her breakfast, slid out of her chair, and took her plate to the sink and dropped it in there with a loud crash. I ran around the corner expecting to see a mess, and realized she had just simply put her dish in the sink on her own. I was so proud!

It's such a huge accomplishment for Lilli, It's hard to explain. Every time she learns to do something after months of practicing with a therapist, it's like a mini graduation. She did it. She learned it. She did it on her own without me telling her. I know I never got teary when Chloe put her dish in the sink for the first time. In fact, I don't even remember it. And I probably was just relieved that Chloe finally listened to me and just did it, but certainly I was not choked up.

With Lilli, it is different.

I never got to see Lilli walk across a stage and "graduate" from kindergarten, and that does make me sad. Why didn't we? I don't remember. School has not always been a good experience for her. But Lilli has many memorable "graduation" moments that we usually take for granted with typically developing children.

Maybe we make too big of a deal around here for little things. But the little things are huge when you have small children. Life is all about the little things with a child. When Josh uses the potty and I clap and say, "Yay!" in a normal voice, he will correct me and say, "No, YAAAYYY!!" like, come on mom, you're supposed to YELL and cheer!

This is what we are supposed to do, moms: yell and cheer for the little things our kids learn to do on their own. And cleaning up is an every hour, ongoing battle in every house with young children. If anyone is going to help me clean up in any way at all, I'm ecstatic.

I will continue to fight the Lego, Squinkie battle and sing the stupid clean up song for as long as it takes. But I can celebrate the fact that one of my children has learned to put her dishes in the sink without being asked. And that's quite an accomplishment.

Now please excuse me while I go tidy up the bathroom.

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?