Tuesday, May 24, 2016

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.

Wednesday, March 23, 2016

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.


"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 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.

Sunday, November 15, 2015

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 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.

The Next Step: A New Ipad

April 21, 2015

When we first moved here, we had a meeting with the new school district about Lilli.

In that very first meeting, (one of many to come) they asked me what we needed. The director of special education asked me if Lilli would need a communication device. She wasn’t just being nice, although she was extremely nice. She most likely asked me because the IEP, a legal document, stated that Lilli needed a communication device. 

Of course it is important to have this in writing. It means that the school district has to provide one for her. But… we had the NovaChat. So technically she didn’t need an ipad. She had the ipad for four years from the previous school district, but we had to give it back when we moved. I had asked the previous school district if we could please buy the school’s ipad to take with us when we moved. I figured, it's old, it's used, maybe they would let us buy it for a fair price. We had it for four years, and it felt like it was Lilli’s. But it wasn’t.

They said no.

I really didn’t have much time to waste lamenting about their decision and the loss of the ipad. What could I do? The answer was a firm no. I had to move on. I had to make plans.  

I took screen shots of as many of the speech app’s screens as I could until it felt like too many and I needed to stop. I took all the pictures and videos off of it and saved them to our laptop. I watched a few of the video clips and got sentimental about how far Lilli had come in the years since we had that ipad on loan to us.
This screen was used by the ABA therapist to ask Lilli questions. She moved the blocks around so they were never in the same place. She would ask, "What's your name? How old are you? What is your brother's name? When is your birthday? What does your dad do for work?" And Lilli would independently find the right answer and press it. This proves she can read. Or at least recognizes and reads these specific words that she has been taught.  I will stress that they practiced on this page a LOT. She was taught this and practiced it multiple  times every day with assistance until she knew it and could do it independently. Maybe this is one creative way to teach a child with autism how to read. 

I hope someone reading this might be a teacher or school administrator who has the power to change a student’s life like someone changed ours. It was a principal who looked at me and said all those years ago, “Well, that’s it. Lilli needs an ipad. Let’s get her one.”

That principal gave us a priceless gift. She gave Lilli a huge chance that we could not give her at that time. It truly was life changing.

I wasn’t sure if we’d be getting another ipad anytime soon. With moving, buying a house, and many other expenses we had at the time, there was no way we could buy our own ipad right away. It might be a long time until we could save up for one. Should we take a chance on a used one? I looked on Craiglist. What about a refurbished one? I looked online at Best Buy and EBay. What about insurance programs? I did not know if getting a used one without an insurance plan was a good idea. We had already been through that before, with one ipad put under a running faucet, and another ipad dunked in the bathtub.

It wasn’t just the ipad, we would need Proloquo2Go, the $200 speech communication app. Also a good strong case to protect the ipad, and a screen protector. This could all add up to well over $800, easily, depending on what type of ipad we chose.

Even so, I wanted to remember what it all looked like, in case we got another ipad and I wanted to program it all the same way again. I needed to document it all somehow.

The whole reason we got the Novachat in the first place (which was paid for by health insurance as medically necessary equipment) was in case we moved out of the district and we needed to give the ipad back. It was kind of like our back-up plan. And now it was actually happening.

I could not believe how much was on that ipad. There were hours, days, months of work put in by the therapists and the teacher and myself, making buttons, taking pictures of Lilli’s things and putting them onto new buttons. It took me a few hours to copy things and then research how to delete all of our information off of the ipad. I erased the entire ipad and put it back to factory settings. It was sad for me. It felt like a total loss.

All of these buttons? It takes time to make each one. It takes time to put all this stuff in there.
There was a lot of time put into her old ipad. There were hundreds of buttons. It all got erased.

Except that it wasn’t a total loss.

We had gained valuable experience. We now knew so much more than I ever imagined I would learn about using an augmentative communication device. This was yet another stepping stone. We were moving closer to our goal of Lilli being able to communicate her thoughts to us clearly. The only problem is, we didn’t know what the next step was. It wasn’t until we moved that I realized what the next step should be.

We needed another ipad.

I explained in the meeting about all of this, but I didn’t ask for an ipad. In that meeting, my focus was on something completely different: Lilli’s happiness. I know that it seems trite to want my child to just be happy at school. It almost seems apathetic. But we had just had a year of daily extreme unhappiness (crying, collapsing on the floor screaming or sobbing, refusing to work) with new teachers. I wanted Lilli to turn the corner and start fresh with a new, happy attitude. I wanted an ipad for her, but I wanted her happiness way more. So when the topic of the ipad came up, I didn’t say much. She had been using the NovaChat for some communication anyway. Only some. Better than none. She used it to tell us yes or no, choices of food for meals, sometimes she used it to tell us she had to go to the bathroom, and mostly she used it to make choices for movies and music. It was progress. She had learned about categories and using describing words and action words. She had used it to take to school and say hi and do show and tell. Her homebound teacher Leslie had used it for spelling and math. We had worked for a long time to help teach her about expressing opinions and making decisions with the NovaChat. 

It was progress.

Lilli had used the NovaChat for many purposes with her teachers and therapists. But still, I could not shake the feeling that this was not the best device for her to communicate effectively. It just wasn’t as easy to use as the ipad was. She couldn’t even turn it on all by herself like she could turn on the ipad. I was not sure what the answer was, but I was pretty sure it might be that we needed another ipad.
But this time it would be slightly different. I knew what we would need to do when we eventually got another ipad…  I just figured it would be a long time until we would actually purchase one.

The teacher scheduled a meeting with the speech, occupational, and physical therapists. It was not like any of the many meetings I had attended in years past. I'll tell you what it was not: I was not sitting there feeling…how do I describe this…like I was invited to be there and listen to others. Like the meeting was about my child but someone else was running the meeting. This felt different. They were there to listen to me. I almost felt like I was in charge of this meeting. The teacher had suggested that I bring my laptop as I had before, and show the therapists the videos I had of Lilli in therapy and school sessions. There were polite introductions, and then they all looked at me and waited quietly, ready to take notes. It was really unbelievable. 

I had the floor.

Where to begin? I told them some things about Lilli, they asked a lot of questions. I showed them pictures and told them what Lilli was like, things she could do, things that frustrated her, things she loathed. I turned on my laptop and showed them many short video clips in a row, most were about 30-50 seconds long.

Before the meeting, I went through years of video clips and chose the best ones to show what Lilli could do. These were my final choices. They were all about 30 seconds long. I was so glad I had taken these videos. There is no better way then to show someone what Lilli can do. Much better than telling someone or having them read something.

Some were videos of Lilli jumping, walking up steps, selecting category buttons on the communication device, learning to answer multiple choice questions on the ipad, and listening to music with headphones on.  There were others. 

I felt a little awkward at times, like, when do I stop? There is so much to tell. I told them about how Lilli does not like to be talked to in a baby voice, like she is a toddler or like she is dumb. We talked about her interest in fashion and her sense of humor. I told them about my frustration in not knowing what reading level she is on, and that there really were no appropriate assessments for Lilli.

And I told them that I believe Lilli will talk one day.

“I know it sounds crazy, but I don’t care what anyone thinks. I pray for this every day, and I just believe she will talk one day. I just do.”

They smiled politely and said nothing.

I appreciated that they were silent. There isn’t much to say about that. Not right now, anyway. It’s my dream. No one can talk me out of having a dream.

Then we talked about the ipad, and how far Lilli had come in communication over the past few years. I explained PECS…they had heard of PECS (Picture Exchange Communication System by Lori Frost) and seemed to nod like it was sort of familiar, but none of them had training with PECS. I mentioned Lori Frost, and one of them picked up a pen and wrote something down.

The speech therapist had heard of Proloquo2Go, but hadn’t ever really used it. I explained about how we used ABA to get Lilli to use PECS and Proloquo2Go on the ipad. The OT had heard about ABA but no one in the district did ABA or had been trained to do ABA.

The tech people were android people. No one knew about Apple products and no one had ipads here.
I wasn’t discouraged, I was kind of in that “It is what it is” frame of mind, focusing more on how to help Lilli transition into this new classroom and be a happy, willing student.

I never dreamed that they would buy Lilli an ipad. And then Proloquo2Go.

This is the email I got from the teacher about a week after the meeting:

I just had a conversation with Mr. [the principal] and it appears we will be able to purchase an iPad for Lilli’s use in the classroom. I will recommend that we buy the one with the most memory and features. I will need your help to recreate (as best we can) the iPad you used in SC that was so beneficial to Lilli.
This may take a few days but I wanted to share the good news.

I was blown away. Anyone who is reading this that might be in our type of situation should know that a small school district can do this type of thing. It is only a matter of the right staff member with power being involved with your child's education.

The past two school districts we have lived in were small, with good people in place. Not a ton of money, mind you. Just good people who knew about certain funding that can be used for this type of thing. Not a lot of red tape, not a ton of paperwork or meetings to go through. Just one teacher going to the principal and saying, “This kid needs an ipad. How can we get one for her?” and a principal saying, “Yes, I can find money for that, no problem.” When I tell people about our experiences, I usually get shocked reactions, and teachers in bigger districts say things like, “That would never, ever happen in our district. That is amazing.”

Why is it so amazing? Shouldn’t it always be like this for any student?

If you had a child, and they really needed something that could really benefit them in their education, shouldn’t they get it? Is it really just that simple?

If I hadn’t been a classroom teacher before, I might not have as much of an understanding of how things work behind the scenes. I know from experience that there are things that go on behind the scenes. There are budgets, there are people to please, there are legal issues, there are reputations, there is always a money issue. There are many many issues in school districts. I want to say that from a parent’s perspective, it is so refreshing when things are just kept very simple.

What does your child need? Does she need an ipad with a $200 speech app? Has it really helped her with school and communication in the past?  Ok. We’ll get one. Hopefully next week.

That’s a good school system. That’s meeting the needs of the child.

This is the next step in Lilli’s life. The teacher is going to give me the ipad next week to completely program Proloquo2Go by myself, since no one here knows anything about it. Then we will have a meeting with the speech therapist, and come up with goals for getting Lilli to use it. I feel that Lilli should not even see the ipad until it is ready and programmed. I will have to take it home and work on it when she is not watching.

I feel strongly that we should put NOTHING else on the ipad except the Proloquo2Go app. No Youtube, no movies, no games. Not at first. We learned from last time that these things are a distraction to Lilli. If she gets to choose between telling us something with Proloquo or playing on a game app, she will always choose the game app. It is too much of a temptation for her.

This ipad will have strict rules from the beginning. It will just be her voice. No other purpose. Nothing fun. Then she will have to use the ipad every time she wants something, to get what she wants.  We will use everything we have learned in the past four years, to make progress toward independent communication.

This is the next step. And it is the next chapter in Lilli’s story.

I think it's going to be a really good chapter.