Dragonflies and Lilies Blooming

We have experienced much change in the last year since moving. I truly believe most of the changes have been good. We have each struggled in our own ways to adapt and settle in here in our new home in the mountains.

Throughout this past year in all the ups and downs and in my never ending search for hope, I began to look for signs from God that he is with me. That he has not forgotten about Lilli. That he has heard my prayers over the course of her whole life. I know he has never forgotten us. Often, I feel very alone. But feelings can be wrong.

I am never alone. And God never forgets. 

I had just reached a point so low that I was looking everywhere to hear from Him.

Knocked Over

A tsunami rose up and knocked me over recently. Something happened that reminded me of the trauma of Lilli's birth. I cannot write publicly what it was that happened. But stuff like that comes up in life all the time. 

Reminders of the tough things we have been through.

They sneak up and knock me over from behind, and sometimes I am okay. But sometimes it takes a long while to recover.

Those long recoveries are times when I am especially searching for hope to cling to. With this incident, both my husband and I were affected, and we found ourselves confessing feelings and thoughts about Lilli's birth that we had not yet shared in 12 years. There is always so much to process. I cried a lot, in the bedroom with the door shut. He understood. 

Lilli's birth was so traumatic that I still carry it with me. I still lay awake sometimes and think about it in the middle of the night. After 12 years. I still think about the things that went wrong. The things the doctor should have done or should not have done. The mistakes the hospital made. Her time in the hospital nursery when we were not with her (because I was in recovery from an emergency c section and my husband was taking turns being by my side and by her side) and she began to have seizures. I still think about all of it and the pain is still there. 


After all this time.

You would think that the pain would have diminished even a little bit after all these years. And most days, it has. Most days, I do not think about it or dwell on it. Just sometimes it comes back to my mind. Some might tell me to let it go. But I think the opposite has happened. Because now I see what Lilli is like 12 years later. Because of who she is and what she is like, I still think about it. I have over a decade of perspective now. I did not know on the day she was born how very difficult her entire life would be. 

I just did not know. 

So when things are hard now, sometimes I think back to how it all began, with her difficult birth. To the start of the story that we are right in the middle of now.

Why did things happen the way they did? I know that God is big and that we do not understand his ways. I know that he has a plan specifically for Lilli and for our family throughout all of this. And I know that this side of heaven, I will never know why things happened this way. I continually have to come back to God and tell him that I trust him. 

I do trust him. Even when everything is so hard. 

Mind Wandering in the Grocery Store

My heart has been especially broken lately. It hits me at odd times. One evening, I was in the bakery section of the grocery store by myself. I was looking at the french bread, and tears just sprang up without warning. 

The tears came because I had been trying to figure out yet another small mystery about Lilli, and it was heavy on my mind.

While pushing my cart past the banana display over to the french bread, I had been thinking about how earlier in the evening Lilli had pushed  the word "bye" on her ipad several times. I didn't know what she meant. She had been upset with me. Was she being a snippy tween, telling me "Bye"? Like, go away mom. Bye. 

I had mentioned something about school and her friend, and then I thought, was she trying to tell me something about saying goodbye to someone at school? To her friend? 

Maybe she didn't want to say goodbye. Maybe it's because she never got to say goodbye to her teacher, who suddenly quit last week with no warning, just before the end of the school year. (Another heartbreak). There are so many things that go through my mind when she pushes a button with just one single word. It kills me. It is the most frustrating thing ever. 

You might think that it was just an accident or maybe she was just pushing it for the heck of it. And maybe, yes, sometimes, maybe it is. But you would not be giving Lilli enough credit if you thought that all of the time. Lilli has so few words on her ipad to use. There is a neurological disconnect in her brain. She knows what she thinks in her mind. She cannot get the words out of her mouth and she cannot get her fingers to express it accurately by herself through a device. It is stuck in her mind, with no pathway out.

How do I know this? Because when she has something to say, she puts her hand on her neck. All the time. Anyone who knows her well knows this. How can I describe it? It's as if you tie bandana over your child's face covering only their mouth, and then you ask them a question. They point to the bandana, as if to say, I can't talk, I have a bandana over my mouth, remember? 

That's pretty much Lilli all the time.

Selfie with Lilli. I said, "Lilli, smile! Lilli, say cheese!"
I don't know why I always do that.
She can't say "cheese." Sometimes, she tries.

This is right after I said "Say cheese!"
She's silent.
She's saying cheese, I think.. Internally.

When she pushed "bye" several times, I sat there across from her at the table and I said, "Lilli, why are you saying bye?" Then I asked her more specific questions about it, trying to guess. 

But there is no button that says what she is thinking. 

It could've been, "I want you to make a goodbye gift for the staff at school." Or, "I don't want to say goodbye to my friend." Or, "I never got to say goodbye to my teacher." 

She put her hand on her neck and looked at the floor, silently. It was no accident. She was trying to express a thought but she only had one word to do it. 

Bye.

My heart. Hurts. Every time. 

Sometimes I get sad. Sometimes I get angry. Sometimes I get depressed. Sometimes I waste time questioning why things are this way. Sometimes I get motivated to try and make things better, or work on teaching Lilli something.  Sometimes I steel myself against the hurt and just ignore it all to save myself from pain - her pain and my pain. Just move on. Do normal life things. Get up and put the dishes in the sink and act like she wasn't just trying to tell me something important and I will now never know what it was.

This all happened last week - the something that happened that reminded me of Lilli's birth, and the crying near the french bread in the grocery store. And then came the morning when I got perspective from a lilli flower. And a dragonfly.

The Lilies and the Dragonfly

I was in the backyard with little 20 month old Nate. I was watching him toddle all-around in the bright morning sunshine as I was trying to just keep myself together emotionally. It had been a tough morning and I was trying to keep from falling apart. The rest of my family had gone to church and I stayed behind because I was so upset.

If you ever think you are too upset to go to church, you should make yourself go. You are probably missing a message that is meant just for you. Later, I found out I missed a message on finding joy in tough times. I wished I had gone to hear that message.




I stood in the yard and looked at all of the orange tiger lilies blooming. All around, blooming everywhere. 

My Lilli was not named after the lily flower. She was named after my mom, whose name was Lillian. But most people called my mom "Lilli." She died when I was 13. Before Lilli was born, we had decided to name her Lillianna. We made it a little different, but still she has the same nickname as my mother. 


Because of these two very special Lillis in my life, the lily flower has special meaning to me, and it has always been my favorite flower.


As I stared at one beautiful bunch blooming in front of me, I noticed a dragonfly. Last year I gave beautiful bead and wire dragonfly ornaments to a couple of special people in my life. Someone had made them and had written the story of the dragonfly's life to go with it. 

One of those special people that I gave a dragonfly to was Lilli. 

The dragonfly spends four years in the mud and muck before it finally crawls out and becomes a beautiful dragonfly. 


According to http://www.dragonfly-site.com:

"Once the dragonfly eggs hatch, the life cycle of a dragonfly larva begins as a nymph. A nymph looks a little like a little alien creature. It hasn't grown its wings yet and has what looks like a crusty hump hanging onto its back. Dragonfly nymphs live in the water while they grow and develop into dragonflies. This portion of the dragonfly life cycle can take up to four years to complete, and if the nymph cycle is completed in the beginning of the wintertime, it will remain in the water until spring when it is warm enough to come out."

Do you know how hard it is to get a good picture of a dragonfly? See mine below with the orange circle. a terrible picture! 
Then do yourself a favor and google image photos of dragonflies. They are all spectacularly colored and different.

I was standing still, looking at the dragonfly thinking about it and what it had to go through before becoming this beautiful huge green shimmering dragonfly on a leaf in front of my face. It makes the butterfly's metamorphosis seem like a short lovely trip down easy lane.


The dragonfly was right next to the amazing, perfectly blooming orange tiger lilies. 

I looked at all of the tiger lilies, knowing all of the sudden deep in my heart that God had put them there just for me.

The dragonfly was hard to find in this picture.
I had to enlarge it and really search.
I circled it above in orange. If you can't see
it, trust me, it's there. Green and beautiful.

Some people believe that things like this happen in life by random chance. I guess that takes away from the magic of life doesn't it? Because I believe truly that it was meant to be that a person who lived in this house decades before me planted all of those dozens and dozens of tiger lilies. And for some reason, that person must have really loved lilies and didn't even know about the future people who would live in this house....us. With a little girl named Lilli.

But I believe God was thinking about the future.

I believe God knew that a little girl named Lilli would be living in this house one day many years later. 

Blooming there. 

And God knew that the little girl's mother would need to be surrounded with signs of hope. Signs that she needs to just keep trusting. And keep hoping. Signs that God has not forgotten her and her daughter. 

That person could've planted anything. Tulips. Daffodils. Hyacinths. They could've mixed it up a little and planted a little bit of everything. 

But no. 

Only lilies. Just lilies. Everywhere. 

Consider the Lilies

Sometimes you hear Bible verses your whole life, but you don't really think about them deeply until one day, bam, there it is right in front of your face. Real and genuine as can be, deeply meaningful. 

There's that verse in Matthew 6:28 that talks about lilies and how we should not worry.

  "Consider the lilies of the field, how they grow: they do not toil or spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. "

Lilies along the side yard next to the deck.

I've heard that verse a hundred times. And yet there I was, standing in my own backyard staring at dozens and dozens of lilies. And I was truly considering them for the first time ever. 

That verse is talking about not worrying, because God will take care of our needs. It is part of a bigger passage about not being anxious or worrying about anything at all.

All along the back of the yard.
I could not even fit the whole row in the picture.

The lilies, they really don't worry. They don't need anything. And they are beautiful.

I didn't plant those lilies. Somebody did. But after they planted them, I guarantee they never did another thing to help them grow or flourish.






Last year, our first spring in our new home, we looked around the yard at all of these green leaves sprouting up and my husband said, "I think those might be lilies!"

I said, "If those are all lilies, then I am going to cry because that will be amazing."

And then they bloomed. 

They all bloomed and I was overjoyed and brought to tears by their beauty and the crazy coincidence that my mom's name was Lilli, and my daughter's name is Lilli, and my favorite flower is a lily.

But consider these lilies. I never did anything to these lilies in my yard. We did not water them even one time. We did not weed around them or prune them or fertilize them or anything. They just came up, and they bloomed beautifully all on their own. 

God takes care of the lilies. 

And God takes care of my Lilli.

There I stood, "considering the lilies." 

I am so worried about my Lilli, and I so want her to be able to do certain things.I get anxious and impatient all the time, with all the waiting and with how long everything takes for her to learn.

If I had stood in front of those flowers in March, crying and hoping and wishing for them to bloom and open right in front of me, they would not have opened. Because they were not ready. They were not to open until late May. 

Even in April, knowing how close we were to May and summer, had I stood in front of them and hoped and prayed and wished for them to bloom, they would not have bloomed. Because it was not time yet. 

That made me consider my own Lilli. God's timing is not my timing. Just because I wish and pray for her to do things right now on her own, well, it's not up to me. If I had known that it was going to take Lilli seven years to learn how to pedal a bike, would I have kept trying to help her learn after one year? Even after six months? Seven years is a really long time.

It has taken Lilli a very long time to bloom. She is still blooming, and many things in her life are still just a seed. 

18 months to learn to crawl.
3 years to learn to walk.
5 years to learn to run.
7 years to learn to jump.
8 years to learn to kick her legs in the pool and move around in an inner tube
6  years of feeding therapy to go from baby/puree foods to chewing regular food. 
6 years to learn to go up or down steps.
7 years to learn to pedal a bike.
8 years of potty training and counting...
11 years of physical therapy
9 years of speech therapy
10 years of occupational therapy.

Yes, we are worn out. Keeping our chins up all the time is really exhausting. 

God is taking care of Lilli. And she IS blooming. She is blooming on God's schedule for her, and God's timing is perfect. In some ways, she might be a little bit like the dragonfly right now, with some things hidden and stuck in the mud. But I have to keep having hope. I have to wait and not worry.

Most of my friends have seen this on facebook.
This is Lilli on her new bike. Pedaling it herself. It really did
take seven years of people manually pushing her feet around on the pedals for
her to get the motor memory for how to pedal by herself.

This verse I love:

 "He has made everything beautiful in its time." (Ecclesiasties 3:11)

In time, we will see the beauty. In time, we will know. Right now, I only know in part. One day, we will know the end of the story.

 "For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known." Corinthians 13:12. 

I need to hear this, so I am reminding myself. I am writing it out so that I can remind myself again and again. But maybe someone else that is reading this needs to be reminded of this too. This is not your typical message about waiting on the Lord. This is about agonizingly long waiting. 

Many. many, long years of waiting. 

I hope that through my struggle and story about waiting and continuing to look for hope, you find hope too. 

When you are searching for hope in the long-waiting, remember the dragonfly. Sometimes, good things take a really long time. Think of the dragonfly nymph, spending years in the mud before if finally emerges with wings shimmering and beautiful, dancing in the air with more agility than a helicopter and more grace than a ballerina.

 And look for the "lilies" along your way. The reminders that you are not alone. God is here. He knows the end of the story, because He wrote your story long before you were born. Hang on a little longer, have faith, and have hope. 

A bunch in another corner of the yard.

Lilies all along the back

Lilies up the driveway

Turning Twelve

January 2016

Lilli turned twelve.

The party was six days ago, but three shriveled pink balloons still dangle from our front porch light. Light pink crepe paper is still stretched across the dining room and a gold star hangs in front of the window. This is typical for our family, to leave decorations up for a week after a birthday. We put them up early and take them down late. It only comes once a year, so we drag it out.

It was my favorite birthday of Lilli's so far. 

There have been other great birthdays. There have been quiet birthdays, I remember one birthday when I felt certain that she was disappointed, but she could not tell me specifically why. 

I remember another birthday when we figured out too late why she was unhappy with how we celebrated. It turned out okay, but she had a few moments of sadness that made me feel bad.

There was the birthday when I made her a black bean brownie cake. I was trying to find a gluten free alternative, and that was one of my early attempts.

It tasted awful.

Lilli has learned how to be a good sport about things. She has been misunderstood and misinterpreted for years. Can you imagine if someone else chose for you how you should celebrate your birthday each year? 

Imagine you are turning twelve. Say you decide in your mind you want a rainbow cake with purple incing, and you want to watch a movie with your friends and have lots of purple and silver balloons.

But you cannot talk. 

Your mom says, "Do you want a white cake or a chocolate cake?" Which does not help, because you do not want either of those choices. You want a rainbow cake. She puts the vanilla and chocolate choices on the ipad, and asks you to touch the choice you want. So you are forced to pick between two things you don't even want. 

You pick vanilla.

Then your mom holds out pink streamers and white ones that say "Happy Birthday" on them as a choice. Those were the ones we had left in the birthday decoration box. There are two gold stars from Christmas. "How about pink streamers and gold stars?" Your mom asks. "Yeah! Pink and gold!" your little sister shouts. Your little brother starts talking about HIS birthday and what decorations HE wants, yet his is over a month away. 

Your mom googles "pink and gold stars tween birthday" and comes up with some amazing party pinterest pictures that she could never duplicate.

Oh well, this will just be like every other year. My mom will throw a party that is different than what I want, but I can't tell her what I really want. 

This is what I imagine Lilli thinks to herself. I try very hard to guess, but it will never be the same as my other kids, who get to imagine exactly what they want and we create the party together, through lots of detailed conversation.

Lilli seemed okay with the decorations and the plans. I think she liked her cake. I tried to make it "Twelve Year Old" ish, based on some tween birthday cakes I saw online. I could not give her the Pinterest, long table with perfect decorations and tablecloth, party favors and huge outdoor tween party with hanging tissue paper flowers and twinkle lights. Pinterest sets the bar too high for average moms like me. But it was still nice.

Every year we get a little better, I think. I've been able to give Lilli choices and have her point, touch, or use the ipad to choose. But I know that the choices I give her might not include the choices she has in her mind, and that frustrates both of us. 

The ipad has given us new freedom. But that freedom is still very limited.

I did what made sense, and I did what was "do-able" for our family that would work for Lilli's anxiety with new situations and groups of people.

How does any twelve year old girl want to spend her birthday? I thought. I tried to remember back to when I turned twelve. 

A twelve year old wants to spend a birthday with her girlfriends. Every year up until now, Lilli has not had any friends to invite. Oh there have been a few children here and there from classes at school or church, but never one specific child who reached out to Lilli with purpose and pure friendship, no strings attached.

Until this year.

This year, Lilli had three friends to invite. A good friend from school who calls Lilli her "BFF."

...Pause for just a moment and cry for joy with me about that.

These girls....hearts of pure gold and awesomeness.

And two girls that are neighbors and good friends to all of our children, and they include Lilli and invite her to play. 

We cleaned the house and decorated. We invited just the two families - just the girls and their parents. Moments before the party was to begin, Lilli walked into the kitchen as my silly bird clock tweeted. I was wiping the counter and making sure we had all the food on the counter ready.

"There's the two o'clock tweet, Lilli, were you just waiting for that bird to tweet so that you know your party is starting and your friends are coming?" Lilli put her hand on her neck  to answer me and smiled and jumped. She was making happy sounds and chattering away in her mysterious "Lilli language" until the first family arrived.

As soon as they walked in, Lilli got anxious.

Her happy sounds turned to upset sounds and she began to drag people around, "asking" them to give her the iphone she uses to watch her favorite Youtube videos. She began to cry. Her sounds of distress increased and my distress and anxiety began to appear too. I so wanted her to love this celebration in her honor.

Finally, she went to the back door like she wanted to go outside. My husband opened the door for her and she went out into the carport and climbed into the mini van. She sat in the van, in her seat. Trying to calm herself down. This is one of the ways Lilli tries to calm herself, by getting into her seat in the van. Maybe it feels safe and quiet in there, I'm not sure why she does that.

When your non verbal special needs child has extreme anxiety, you try a lot of things to help them.

Sometimes you do weird or unconventional things. Sometimes you do things you don't want to do. Sometimes you do things you would never let your other typically developing children do, and it's unfair.

My husband and I had a quiet consultation in the corner of the kitchen and decided against our wishes to give Lilli the iphone. Here's the thing about the iphone.

We hate it.

But it helps Lilli calm down as she gets lost in her world of repetitive Muppet Show and Sesame Street clips on youtube. And this was her day. Her party. Did we want her to sit out in the van, anxious, during the whole party?

As soon as we gave Lilli the phone, she was happy to come in and be with everyone. She was all smiles. She leaned in and gave hugs and was completely fine.

She had her iphone "security blanket" in her hand, and she was able to function socially.

I don't really get it, but I don't really get Lilli sometimes.

So, all of the pictures from the wonderful, happy party have Lilli with her iphone playing YouTube.
She sat on the couch next to her BFF from school and watched as the presents were opened for her and we all exclaimed over them. She got all twelve year old appropriate gifts. A cool pillow for her new bed. Hair accessories. Cool clothes. An MP3 player.


She was all smiles and laughs.

You know you are loved if you are put into a "Lilli headlock."

It was an amazing day for Lilli, because she participated in her entire birthday celebration, happy the entire time. I wish she didn't feel like she needed the iphone to calm herself down in unfamiliar, unpredictable situations.

But life is one step at a time, for Lilli and for us as her parents.

We will figure out another way for Lilli to calm herself. And I will smile at the pictures of her birthday despite the iphone, because it was a great birthday.

Lilli has friends now. The best present of all.

Getting Dressed

Dressing a baby is so easy.

When you have a baby, you get all the fun of picking out little adorable outfits. Lacy dress? It's adorable. You're wearing it for a picture. Oh, what, you hate it? Too bad, you look like a doll baby. Now endure my attempts to make distracting noises at you as I snap 35 pictures and post the best one on facebook.

Isn't this the best picture? Baby Chloe in a lacy dress, her first moments home from the hospital. Do you think she likes her dress? Lilli's like, uh, what's with that angry baby in a frilly dress over there?

Dressing children as they get older? Not so easy to control.

Yesterday, we all got dressed for church, and this is what that looked like:

Nate, the 1 year old: we picked out his clothes and dressed him. Obviously. Nothing fancy for that little guy, though. He's the fourth child. I chose a shirt that didn't have food stains on it and socks he wouldn't be able to pull off very easily. Moms of multiples, you know where I'm coming from.

Josh, the 5 year old: very picky about his clothes, he chose pants that he feels comfortable in and a shirt he likes, and he put on his own clothes. Do orange and navy stripes go with black pants? Who cares! It feels good.

Chloe, the 9 year old: chose a dress that was inappropriate for the weather, (a sundress of course) argued about it, came up with a compromise, and came out wearing a sweater dress and leggings that she chose and put on herself. Also chunky heeled white sandals. White sandals. In October. With a sweater dress...because they have "heels."

I let her. I remember fighting with my own mother about clothes and shoes when I was 9. Some things you just have to let go.

Then we have Lilli. Lilli is older than Chloe, so why wouldn't she care about her clothes and shoes? She cares. But she won't go in her room and pick out her clothes and dress herself. She can't even put her own shirt on.

The most important thing about Lilli that I've learned over the years is that she has parts of her that are age appropriate. Those parts are on the inside. It was never so evident until the most recent years when we finally discovered that she really does care about certain age appropriate things. Yes, she still plays with Dulpo Legos and puts them in her mouth. Yes, she still watches Veggie Tales, Sesame Street and even Baby Einstein. They are comforting to her. I don't know, maybe she will always watch them. She likes sameness. Some things in her life are still very babyish.

But that does not mean that Lilli is a baby. Or that she should be treated like a baby.

One thing that has always irked me as a special needs mom is how she underwent assessments in the early preschool years, which deteremined that she was on a cognitive level of 18 months...or something like that. Maybe it was 15 months. Whatever the level, it was extremely low. After 11 years, I have more wisdom about this. No one ever said to me, "Your daughter might have a level of 18 months for SOME things, maybe even most things but not all things. Treat her like you would treat other children her age, and accommodate appropriately. Talk to her age appropriately. Dress her age appropriately. Introduce age appropriate toys, music, and interests. Start at her age and work backwards."

That would have helped me out a lot. I am still working on this. I am still not good at it.

I am finally catching up on how she wants to pick out her own clothes. She wants to choose which necklace she wants to wear, she wants to choose how she wants her hair to look, and she wants to choose which hair accessory I put in her hair. She cannot brush her own hair, but she still cares a lot about what it looks like. She cannot put on a sweater, but you'd better believe she cares about what that sweater looks like.

The new speech therapist has helped us simplify a method of having her be in control of choosing what she wears. We used to have all of her outfits and jewelry on her ipad, but it was still overwhelming with way too many choices. Now, I pick out two or three things, and give her the ipad. She can tell me if she approves or not. If she doesn't approve, I go get more choices.

My husband went through her drawers and picked out an outfit that she hadn't worn since last winter. The weather was cooler, and we were pulling out long sleeves for the first time. He put the clothes - a white seqinned shirt, black capri leggings and a black frilly skirt - down on the table in front of Lilli and said to me, "This is her outfit, is that okay?"

"I don't know, ask her." I said.

This is the new routine now, that we do every school morning. It is time consuming. But so necessary.

"Do you want to wear this?" he asked her. He pointed at the outift on the table in front of her and held the ipad out for her to see.

"I don't want to wear that." She answered immediately.

Okaaaay....


"Get a pair of jean jeggings, she's into those right now," I told him.  "I'll get them." I went back to find her favorite pair and when I brought them out, my husband had put the white sequinned shirt on her.

"Wait, did she say she wanted to wear that shirt?" I asked as I handed him the jeggings.
"I don't know, I just put it on her," he answered, getting frustrated with this girly outfit stuff.

Dad, see? That shirt is so, like, last year.

"Middle schoolers don't wear those kind of skirts with leggings anymore, they just wear the leggings, she doesn't want to wear stuff like that anymore. Ask her about the shirt," I said.

"I don't want to wear that." Lilli pressed on her ipad.

My husband threw his hands in the air and said "I give up, you do it,"

That made me laugh but he doesn't know what she would want to wear. I am not good at fashion but I'm trying really hard. Everytime I go to the middle school, I look at what the other kids are wearing. Last week I went clothes shopping for Lilli  - without Lilli. This is challenging because it would be easier hypothetically to have Lilli touch and choose which clothes she liked right there in the store, but we have had way too many overwhelming shopping meltdown experiences. The sensory overload of the store with the lights, sounds, smells, and unexpectedness of it all with people walking past, unfamiliar terrain walking around clothes racks and displays....it is too much for Lilli.

So I now bring home choices and ask her. If she likes them, we keep them. If not, I return them. So much easier than a meltdown for Lilli and anxiety and stress for me and other people in the store.

 I asked a salesperson for help. She happened to have a middle school aged daughter, bonus! I asked her what her daughter would pick out if she went shopping there. She pointed at a wall of regular jeans.

"Well, I'll tell you what they DON'T wear, they don't wear these," as she swept her arm over the whole wall.

Good to know. I did not know that regular cut jeans are currently "out."  I wish Lilli could tell me that kind of stuff, I thought. She directed me to other racks with skinny jeans and leggings, and outfits she has seen other middle schoolers purchase recently. But also, I wonder, do middle school kids think it's "cool" to buy clothes at Walmart? One thing at a time, one thing at a time.

There is a lot of guess work going on here, trial and error. Lilli's teacher asked me once how Lilli got her sense of fashion and how we knew how to dress her.

"She has had some hip therapists in the past few years, and several therapists and a teacher who bought her clothes and helped her pick things out," I answered. "She has people buy her cool clothes all the time."

It's true. Her ABA therapist, her homebound teacher, her speech therapist, even the ABA therapist's supervisor...all have bought Lilli cool clothes. They could tell I was fashion-challenged.

I take no credit. The store "Justice" has been a big help, even though it irritates me with its high prices, trite slogans and loud music. (I must be in my 40s.) But now, of course, I wonder if she will move onto another store brand, because do middle schoolers wear Justice clothes? I really do not know. I think not. I hate brand names. My brand names are Good Will, TJ Maxx, and anything black. Truly. Black is simple and goes with anything....except maybe navy, but I'm not even absolutely positive about that one. And maybe brown? I honestly do not know. If you feel so inclined, please comment below and tell me if black goes with navy or brown. Thanks.

Anyway. I went back to Lilli's clothes and got a new sweater she'd just received as a gift from a hip relative who knows what's cool to wear. She's much more up on style than I am, I trust her. I also grabbed a long tank top from Justice to go under the sweater.

"Here, what do you think of this?" I asked Lilli as I held it out to her.

"I like it." she pressed.

Score. I put the tank and sweater on her, and then we had to discuss her hair and jewelry. Would we be late for church because of this? Oh yeah.

She pressed the button for ponytail and pointed to a sparkly butterfly clip that I held out to her. We went to look at her necklace collection, and that took forever. I held each necklace out to her and she pushed, "no, I don't want to wear that one." Six times.

Finally I held out a pink starfish pendant that we'd bought at the beach. "That's the one I want," she pressed.

When she was done being dressed, I made a big deal and said, "Lilli, you look so fabulous in that outfit, you just have to look at yourself in the mirror. Come on."

I walked her to the full length mirror we have in the hallway. Lilli doesn't look at herself in the mirror like Chloe and Josh do. They spend lots of time studying themselves. Lilli will glance quickly and look away. She smiled and I watched her as her eyes darted around the hall, everywhere but the mirror. This is autism. I wonder sometimes if she sees life like we see a kalidoscope. I have read that looking straight at things can even almost hurt to someone with autism.

"Come on, look at you!" I encouraged her. I pointed at the mirror. "Look!"

Her eyes flickered over for half a second at her own image in front of us, and immediately looked at the wall. But she had seen. She smiled and put her hand on her neck to show she wanted to say something. Whatever that something was, I don't know. She only has so many choices on her ipad right now, and we have put the facilliated typing aside for a long time now due to focusing on having her use the ipad completely independently, without being touched or guided.

Now she was ready to go. Annnnnd we were going to be late.

But it was so worth it to see her smile.

And that's how we dress a non verbal 11 year old middle schooler.

Let Me Be a Part of It

September 2015

I picked up Lilli from school and she was silent, unsmiling.. "She didn't want to work today," the teacher told me. She climbed into her special needs carseat and stared ahead.

This was the third day in a row I had come to pick her up and hear this news.

What was going on? She had been having wonderful days every week. School had been a complete turnaround since this time last year. It had been so good every week until now. I didn't get it. It was something about this week. Something was bothering her but as usual, I had to be a mystery detective to figure it out.

On Thursday, same thing. Only, in addition to not doing her work, the teacher informed me that at lunchtime Lilli took her arm and swept her entire lunch and ipad off the table onto the floor. He said she wasn't upset, There was no crying or anger. She just purposefully swiped everything onto the floor. It's not like her at all. She never does that. So uncharacteristic of her. The teacher told me if it had not been witnessed by the assistant teacher, he never would've believed it. We wondered together if this was part of hormones and middle school general moodiness and angst.

I lectured her on the way home about how everyone has to do work even when they don't feel like it, and why would you throw your lunch on the floor? I'd better not ever hear of you doing that again...etc.

She looked out the window solemnly.

Now that she is in 6th grade, I am more aware that there are factors I need to consider for her moodiness, such as hormones. This is new territory for me. Since she is our oldest, we are navigating through puberty with a child for the first time. As tricky as it can be for any parent, I'm especially stumped because Lilli has so many other factors going on, such as being non verbal, having physical limitations, and seizures. So how am I to know what is going on? If it was hard before, it's much harder to figure her out now that she is a "tween."

On Friday morning, I dropped Lilli off at school and noticed that the teacher was wearing a shirt that was out of character for him. He typically wears the same type of thing every day. "What's with the shirt today?" I joked. I feel comfortable picking on him because he always wears a black tee shirt and jeans. And I usually wear a black shirt and jeans. (Although since this has come to my attention, I have seriously tried to branch out to greens and blues in the last year). We who are fashion-challenged have to stick together.

"It's dress like a decade from the past day" he explained. A flashback Friday kind of thing.

"Oh...I didn't know," I said, feeling kind of bummed. "I would totally have dressed Lilli up for it."

"Oh does she like to do that?" he asked.

"Yeah, well, she doesn't like to wear certain things...like hats...but yes, she likes to be a part of stuff like that..." I was feeling bad and wondering if this was going to be an issue today.

I mentioned that I'd noticed there seemed to be a lot of dressing up in the past few days, and he explained that this week was "Spirit Week." Every day there was a special theme and the kids were supposed to dress for that theme.

"Yesterday was color war day, and the 6th graders wore gray, the 7th graders wore blue, and the 8th graders wore white."

"Oh..." I thought about it. School colors. I'd dressed her in hot pink yesterday. That was the day she swiped her lunch onto the floor.

I looked at Lilli. "Lilli, is that why you were mad yesterday? Because you were wearing the wrong color and you couldn't tell me?" Up until this point, Lilli had been sitting silently, with no emotion, in her seat with the van door open while we stood outside next to her and talked. All of the sudden, a huge smile spread across Lilli's face and she reached over to me, grabbed my face and then grabbed my head. She pulled me toward her in a tight headlock hug and squeezed me, hard, while making a breathy sound that I can describe as kind of a smiley sniff. That's one of her happy noises.

 Huh. That must've been it, I thought. There is no question to those who know Lilli well, that she is always listening to conversations. Her timely reactions like this are meaningful and appropriate.

 Dressing up for Spirit Week. This kind of stuff is important to a 6th grader, special needs or not. I felt completely sad and guilty, even though I had no idea, and sorry for her in yet another situation where she had no control.

"Well, she looks great today, hey Lilli, I like your outfit!" the teacher complimented. Even though he's not into adult fashion, he can appreciate middle school fashion and knows it is important to Lilli.

Lilli wasn't super smiley as she walked through the door with her teacher, but she seemed okay. I said goodbye to her and drove off. But as I drove home, I thought about the whole week. And I teared up.

It was so unfair, that she went to school each day all that week and knew it was Spirit Week and that each day had a theme, but she had no way to tell me. She can only tell me a limited number of things on her ipad. Most of our communication is through yes or no questions. I had no idea to ask her anything about dressing up.

My tearfulness turned to focused determination and I gripped the steering wheel tightly. I realized I needed to go home and get Lilli an outfit, and go straight back and dress her up. I began to think of an idea using what I knew we had at home. By the time I walked into the kitchen, I had a plan. My husband looked at me and knew something was wrong. I explained, and told him I was going to get some things and go right back to the school.

"Go," he agreed.

When I arrived with my bag of stuff, I looked carefully at other students who were walking through the halls. I saw a lot of tye dyed shirts, a girl wearing a sparkly long skirt, and some other outfits that looked like they were supposed to be costumes of some sort. There were two male teachers standing in the hallway and one had a polo shirt on with the collar turned up and hightops on. The assistant principal was further down the hallway dressed like Cyndi Lauper with legwarmers and a wig.

When I walked in the classroom, Lilli was sitting in her usual spot on the floor, with the speech therapist next to her and a pile of Legos. I got down on the floor and took the ipad.

"Hey you, I brought you a hippie chic outfit so you can dress up like you're from the 70s, do you want to go change?"

I showed her the choices I brought. I had a small selection of skirts or jeans, and jewelry and hair accessories. She used the ipad to tell me yes or no for each item, and we went to change. After I had changed her, I saw a little hint of a smile. But she still was upset, I could tell. I think the damage had been done. It was almost too little too late. All week, she had missed out. And today she hadn't gotten to wear her outfit into the building. Now everyone was in class, and there were only two other students in her room, one of them non verbal. Who would even see her? As I tried to give her a happy pep talk in the changing area, she tried to tell me something. I wish I knew what it was.

Her sign for wanting to say something.
Unfortunately, if it is not pre programmed onto
her ipad, she can't tell me.

Trying desperately to get out a word. All she said was "Ggggh."

Could this, the Spirit Week thing, have been why she had been having a tough week and not doing her work?  Was this the reason behind the moodiness and "unwillingness to comply"?

I certainly believed it, but I didn't know if others would. It takes a lot of faith to give Lilli that kind of credit. I like to err on the side of giving her more credit as opposed to less. We would see if this outfit change would make a difference in her day.

When I brought her out, the teacher made a big deal and took her picture. I left.

She can't get the word out. This kills me. Every time. 

When I picked her up later, he told me yes, she had a better day. Her attitude had improved a little. She had done work.

I wasn't surprised.

Later, I talked to her about it all. She smiled and hugged me. I truly think that was it. She wanted to participate and be a part of what all the other students were doing. I just did not know, and since she cannot tell me or dress herself, she was stuck wearing what I dressed her in for the week. I do give her outfit choices every morning, and she approves or vetos the choices. But I never offered gray clothes on Thursday or a 70s costume on Friday morning, so she could not tell me.

The teacher sent me a video that the school had made, talking about Spirit Week and showing pictures of all the costumes from staff and students all week long.


Lilli had missed almost all of that.

It broke my heart.

I know, it is so ridiculous. Such a small thing. So what, spirit week... so what? I tried to tell myself. But my heartbreak was because she could not tell me. And it's because she is already so unable to participate in many other middle school activities. These little things are hard. I want her to be included. I know she is different but she can still be included to the extent that she is comfortable.

I hadn't known there was a school dance until I heard about our neighbor going to it. Lilli couldn't go, could she? I thought back to my own middle school dances. Memories flooded back of acting like a giggly, boy crazy, just-turned teen, running back and forth to the bathroom with groups of girls, checking my hair and lip gloss in the mirror, talking about boys we had crushes on, and dancing until we were sweating. Getting dropped off at the curb out in front of the school and picked up hours later.

There is just no comparison to my middle schooler Lilli. I am navigating through what should be a typical middle school experience in a completely different, unscripted way. Nothing feels nostalgic, like, Oh yes, I remember this from when I was in 6th grade....ah, memories. No. Everything is a step back, trying to figure out how to make the situation work in a much different way for Lilli, and trying a bunch of ways to make it be OK.

Nothing is typical.

And I am dealing with my own feelings and realizations throughout all of this. Can Lilli participate in this? No. Can she participate in that? Maybe in a tiny way. She is in middle school, but she is in a different category. I am trying to balance what she can realistically participate in with what I know middle school is all about.

Remember back to when you were in middle school. Remember those kids in the special class, at the far end of the building and you hardly ever saw them? That's my kid. But her classroom is right in the 6th grade hallway. So she is closer to everyone, but she is still different. She eats lunch in her classroom. Someone helps her eat. She goes to PE class....with the other kids who have disabilities. She could never participate in a regular gym class. Someone who does not know her might think I am just being negative, but no, she really could not handle it. CP and autism is a tough mix for someone  to try and follow directions and participate in a group activity.

"Mainstreaming" or "Inclusion" is a great thing, except for when your child can't really participate with other typically developing kids. That's why the small things are a big deal to me. She can't play sports. Band? Chorus? Nope.

Although I hate to be negative and say "Lilli can't." She..can't do those things. That's true.

But Spirit Week? Yeah, she can participate in that in her own way.

When I talked to the teacher about all of this, he asked me what I thought about the middle school dances. He was possibly being polite. He and I both know it is very far fetched. I would need a special kind of person to help me with this.

If Lilli were to go to a middle school dance, this is what it would look like: She could handle about 7 minutes tops. Maybe only 4. She would be unsure and possibly overwhelmed, but maybe she would love the music and the excitement and being around the other kids, and maybe she would jump up and down and squeal and laugh loudly. She would stick out like a sore thumb. Everyone would look at her and wonder. Maybe some cruel kids would make fun of her, or maybe people would not know what to think. She would have to have a teacher right there with her, holding her hand or arm. She might enjoy the experience for just a couple of minutes, and if, hypothetically, a couple other sweet, amazing selfless girls were to hold her hands and encourage her, she might last for a few minutes more. Not likely, in middle school. Then she would look for the exit and pull on the teacher to leave.

But seriously, would that ever even happen? Other kids being accepting of a special needs girl at a dance? I sadly doubt it.

It's all about experiencing things, for a short sliver of time. And it will always be different for Lilli. She cannot participate in a lot of things. But still, she can participate in a few things.

Lilli went to the beach and loved it for the first hour, but then she was ready to leave, while her siblings wanted to stay for three more hours. Lilli can go to the library for a couple of minutes, but if we linger too long, she loses it. Lilli can go to maybe one store, for a very very short list. Like, two things. After that, she melts down.

So with anything, I think Lilli wants to experience things and take a little "taste." She could've worn gray to school on Thursday. She probably would not have lasted at the pep rally for more than a few seconds. But she would've seen and heard it, to know what it was like.

Tuesday was "Twin Day." Dress like your BFF. Lilli doesn't have a bff. Another stab to my heart. Will she ever have a bff? The teacher had dressed like one of the other students that day. I remembered now, as I reflected on the week. He had explained it, and I'd said, "Oh, well who is Lilli's twin?" He said he didn't know. I did not think too much about it until Friday, when the week had culminated into a disappointing realization. My neighbor told me later that the 6th grade girls had come up with a plan so as to not leave anyone out. They all wore khaki shorts and navy tops so that they would all be "twins" together.

I didn't know.

What she wore on "Twin Day."  But no one was her twin.

On Twin Day, Lilli had worn a cool new pair of coral colored jeggings I'd gotten her and a black and white tunic top, with a matching coral necklace. No one else was dressed like Lilli. Had she noticed? If everyone was talking about it, sure she noticed. That day when I picked her up, the teacher had told me she refused to do her work and they could not figure out why.

I think I know why.

So, the teacher did apologize and he felt bad, He did not think Lilli cared. He promised to send me the school news each week so I would know about special days and events.

As for the school dance, I guess we will just put that idea on hold for now. It is one of many situations where Lilli will miss out. I can't take her. I'm her mom. I know that's totally not cool. And maybe she will get to go one day and try it, or maybe she will never go.

This struggle I have as her mom will probably never go away. A parent wants a child to experience life to the fullest and follow their dreams. I am ok with saying, right, she cannot try out for the cheerleading squad. But I also think we all should lean towards giving someone the benefit of the doubt. So here is why I wrote this post. For all the parents, teachers, therapists, or anyone who has the opportunity to let someone be included. Don't assume they do not care. Especially about the little things. Try to include them. Even a few minutes is great.

Sometimes, the "little things" are all they have.

Lilli with a makeshift 70s outfit, right before I left.