Thursday, January 30, 2014

Returning Christmas Stockings...and Reminding Lilli Who She Is.

My three little blessings.
Last week, I got teary and overwhelmed at the mere thought of going to the grocery store. I needed just one important item. I ended up building my entire day around how to get to the store without having to take the kids.

Almost always, a small errand becomes a huge deal. We are always working on public outings with Lilli, and a few go amazingly well while most do not. My tears probably sprang up quickly because just a few days before, Lilli and I had a bad experience at Walgreens.

I had let quite a few days go by, wishing for one particular make up item - one of the very few I wear these days when I want to shed a little of that exhausted, stay-at-home-mommy look: lipliner. So silly, so unneccesary. Yet I was motivated enough to make a plan to get it. Some people need their Starbucks... well, I "needed" lipliner. I dropped Josh off at preschool, and Lilli was riding in the back with her ABA therapist, Morgan.

Therapy sessions even continue in my car. Morgan was making sure Lilli was keeping her shoes on while we were driving - one of the many therapy goals that I requested because it might make life a teeny bit easier for me in the future. I am constantly putting shoes back on her every single time we get out of the car. (Kind of like how a two year old pulls off shoes and throws them...only we've been working on this with Lilli for eight years now.) My we're-in-a-hurry-I'll-just-carry-you-across-the-burning-hot-parking-lot-instead-of-putting-on-your-shoes-for-the-thousandth-time method has become quite dangerous for my back, now that she is ten. I know other moms of children with special needs who refuse to wear shoes. It's a small thing that can become a big deal. I've lost shoes in parking lots, grocery stores...well, pretty much any public place we've ever been, I've had to run back and look for and retrieve a shoe all of Lilli's life. So this seemingly simple little's a "goal."

The "keep your shoes on" goal.

While pulling out of the school parking lot, I said, "Morgan, I think I'm going to run into Walgreens for lip liner." I thought it would be a good time to get it, since Morgan was with me to help Lilli, and the other two kids were at school. Morgan immediately began to give Lilli a little pep talk about going into the store. I overheard bits of "Just buying one thing"..."keep your shoes on"...."only for a few minutes."

We pulled into the Walgreens parking lot and got Lilli out of her special needs carseat. She had her shoes on. She was not happy, but not crying....yet. We walked in and I made a beeline for what I needed. Found it instantly, but as we walked to the check out, I spied the "Christmas 75% off!" sign.

Uh oh. You know I just had to go and take a peek. It sucked me in like a magnet.

"Come on, Lilli, I just want to take a quick look," I said as I led them a few aisles over.

"You knew that was coming," Morgan said to Lilli jokingly. "Can't pass up clearance." Lilli started to cry. She was not amused.

Lilli hates spontaneous shopping. I broke the rules. I told her I was only getting lipliner, and now I was totally going to look at Christmas stockings in January. She was mad. As we headed toward the other side of the store, we brushed passed a Walgreens employee who did a double take at Lilli. Her face scrunched up in a mixture of confusion and shock as she tried to figure Lilli out.

One look at her awkward second of realizing that she is not saying words, just crying, one glance to see that Morgan was holding this almost-ten year old's hand...I'm sure that was enough to quickly reveal to this Walgreens employee that Lilli has special needs of some sort.

I blocked out the crying and the stare, and found the clearance shelf.

Lilli still has an Elmo stocking. Chloe has a My Little Pony stocking, and she has not been into My Little Ponies for a few years now. Josh has a random "Peace" stocking from when Jasen I first got married. I have been wanting to buy new stockings for the kids for a few years now, and I keep hoping I will find ones I like on sale. As I sifted through the clearance Christmas stockings, Lilli cried harder. I held a few up to her to see if she liked them, and she pushed them away and cried. Morgan was fantastically multi-tasking, softly speaking to Lilli and trying to get her to calm down, while doing mental math and responding to my ridiculous questions of "What do you think of this one? What's 75 percent off of $7.99? Oooh, I think this one is cute, which one do you like better?..." Meanwhile Lilli escalated into loud wails and occastional growls and shrieks of anger.
I know, Elmo IS cute. He's been around for years. He even sings if you put batteries in him.

I get why strangers think I am a terrible mom. I imagine it looks like I am completely ignoring my distraught, sobbing child while shopping for frivilous things.

Yes. I am. I am trying to ignore it for a few moments. It's very hard to ignore, but if I don't, I will never be able to shop and make decisions.

We had been in Walgreens for a total of five minutes, and that was enough stress for all of us. I grabbed two sequined stockings and we headed up to the check out. The same Walgreens employee was standing behind the counter. She scanned the lipliner and stockings while glancing over at Lilli. Finally, it was as if she could not help but make a comment.

"She's cranky!"

"Yeah," I responded. I wasn't up for explanations today. Actually I was thinking about the silliness that I had just bought two matching stockings, not three, and where was I going to find one that matched these? Would my husband share the excitment in my off-season clearance find? Not likely. My thoughts were interrupted rudely.

"She's got snot running down her face," Walgreens woman said with slight disgust. I wordlessly rummaged for a tissue in my purse and gently wiped her nose.

"Is she autistic?" She asked in a clipped, unfriendly tone.

I cringed. Should I correct her? Tell her that the word "autistic" is very un-PC these days? She is a person, who has autism. Later, I found out that Morgan had cringed too.

No, I did not correct her. I merely said: "Yep."

She kept looking at Lilli, and she snapped blandly, "My son's autistic."

I never saw that one coming. "Huh, really?" I said with surprise while completing the transaction on the keypad.

"Yeah. He had early intervention and stuff."

"So how old is your son?"

"He's four."  No emotion, pride, or love oozing out of this mom about her little boy. Maybe she was tired. Maybe she was bitter, or hopeless, or just plain jaded about the whole "autism" business. Who knows. Maybe she just hated her job at Walgreens.

She asked me where Lilli went to school and I explained that she was homebound, but visited a class in the nearby elementary school a few times a week. Lilli kept crying, and Walgreens woman kept glancing over at her with a slightly irritated look.

She nodded her head in Lilli's direction and said bitterly, "She's gonna be a real handful when she gets older."

I began to feel a slight rise in temperature in my body at that confusing comment. I thought moms were supposed to connect and encourage, not criticize.

I couldn't help it. "Aw, come on now, let's be positive. I don't need to hear comments like that," I responded as nicely as I could.

She said nothing. Lilli cried. Morgan hugged her next to the counter to keep her from running. The purchase was complete. I picked up my bag, and we left. I got behind the wheel, a little stunned by what had just happened.

A few days later, I told Morgan that I was still thinking about our experience at Walgreens. She said she was too, and that she had considered going back to say something to that employee. I kept thinking about it, and the more I ran through the events in my mind, the more I realized that I was going to take those stockings back and return them. I didn't want them anymore. I did not want to pull them out every Christmas and remember that whole interaction at Walgreens in 2014.

A few mornings later, I was driving with Lilli (and sleeping Josh) after dropping Chloe off, at school. I spoke up in the silent, chilly van, and told Lilli that I was sorry.

I explained that I had been thinking about what happened at Walgreens, and that I was sorry I had not stuck up for Lilli more. I am Lilli's best advocate, and I should have said something on her behalf. I should have told that woman that Lilli was smart, that she could hear and understand, and that she was a beautiful girl inside and out, who happened to have autism and hates shopping. I told Lilli that I didn't even want those dumb stockings anymore, and I was going to return them. "I'm sorry Lilli, I should have stuck up for you. That lady was not nice. It's not right, but sometimes Mommy just wants to get what she is buying and get out of there fast, away from mean, unhappy people. I'm sorry."

I spoke to Lilli with no verbal response, but her physical response spoke volumes. I watched her in the rear view mirror as we headed home.

Before I had begun to speak, she had been sitting still with a blank look on her face. So boring, these trips to drop off her siblings each day. As I talked to her and apologized, she put her hands up over her eyes, and a huge grin spread across her face. She looked out the window and made little noises and smiled. She put her hand up and grabbed her neck - her gesture of wanting to say something but the words won't come out. I know she was glad about my apology. I think she forgives me.

I am posting this before the end of the story. You see, I have to find a time to go back to Walgreens. It might take awhile. I might have to take Lilli. I might not end up seeing that same employee. If I do see her again, I am not really sure what I will say to her. But that doesn't really matter. What matters is that Lilli knows that she is not what strangers say about her. She is not a "handful." She is not merely the label of "autistic." She is not annoying. She does not deserve to have someone comment in front of her that she has "snot running down her face."

I don't want the stupid stockings, I want Lilli to know who she is.

So no matter how inconvenient, I will go back. I will do that for my daughter. And maybe next year, I will find much more fabulous stockings for my kids, without a bad memory attached to them.
Cute, huh? Such a shame. They were only $1.99. 

Sunday, January 5, 2014

The Fate of Ipad #2

When your kids do dumb things, does it ever remind you of something dumb you did when you were a kid? It's easier to show grace that way. It sure reminds me. I did a ton of dumb things. That is the perspective I am choosing to take on what happened here this weekend.

A little over a year ago, I read Carly Fleischman's story, "Carly's Voice." It is the story of a girl who has autism, and she learned how to type to communicate. Her story is amazing. She was the inspiration for why we are trying to teach Lilli to type independently. Even after two and a half years, we are still going at it with faith that we are on the right track. But I've posted about that before. In this post, I wanted to point out that when I read her story, several details really stuck with me.

One was that Carly broke a bunch of laptops while they were teaching her to type.

Another was that it took a very long time to teach her to type, but they never gave up hope, and they tried hard, for years.

Even after she broke a bunch of laptops.

I feel like the number was pretty high, like six or seven laptops, but I can't remember. If you ask me, even one or two is a lot. For some parents, if a child with special needs breaks even one device from slamming it or throwing it...well, I think many would say, "That's it. My child cannot have another one. It's too expensive. This is obviously not the way to go. Let's try something else." I think some parents will not even try to teach their child to use a device, because they fear their child will just break it. Yes, it's true. They might. In fact, they probably will.

But not Carly's parents. I picture them sighing, maybe yelling, or maybe just sulking in silence about it all, and then trudging out to buy yet another laptop. Because they had to. How could they not? (By the way, Carly is now in college, taking classes. So imagine if they'd given up after she'd broken the second or third laptop.)

Carly's story really has had a lot of influence on us. This girl has given hundreds of parents (maybe thousands - you should see this girl's facebook page) of children with autism something that cannot be bought:


Because if it can happen for that girl, then maybe it can happen for my child too.

Hope that even though things are unbelievably difficult, there might be a reward one day. A reward of breaking through the silence. Of finally knowing exactly what my child is thinking and wanting to tell me, all the time. And even to think that there "might" be a chance that Lilli can learn to type all by herself, that maybe one day she "might" talk, there's a chance. No matter how small that chance may be, there is hope.

So you may be wondering why I remember specifically that Carly broke a bunch of her laptops.

It's because Lilli just broke her second ipad last night. Her second one.

Yep, plunged it into water and gave it a bath. Pulled it up and the screen was blinking. That destruction took probably all of about five seconds.

I am going to say this, even though I probably shouldn't. But I wasn't home at the time. I was gone for 25 minutes and my husband was there, running water in the tub for Lilli and getting ready to bathe her. But he was distracted... and momentarily drawn away from the bathroom by chaos in the kitchen with our other two children, a spill, and a borrowed dog.

Don't ask about the dog. So even though it was a big accident, well, I wasn't there. I was picking up my niece at the airport. I had nothing to do with it. That's all I'm saying.

So the ipad #2 is sitting on the heater vent this time. Last time, when ipad #1 was put under the faucet by Lilli (also discovered by my husband, I might add - I was home that time, but he was closer to her...I'm just saying) we did the bag of rice method for a week. And that ipad never recovered. It never came back on again. I had to drag all three of my kids to the genius bar at the local Apple Store, only to be told by the genuis (who took a special flashlight and shined it inside one of the little holes):

"This ipad has water damage."

I had just told him that my daughter put it in the sink and turned the faucet on. (She likes water.) So my experience at the "genius bar" kind of made me chuckle.

I felt like saying, "Well, DUH!" But you can't do that in an Apple store to someone who has the job title of "Genius."

I know, the rice in a bag trick has worked for many of you. Just not for us. Maybe we should have used white rice, not natural whole grain brown rice. I don't know.

We are trying the prop-it-on-its-end-on-the-heater-vent-and-pray tactic this time around.

This ipad is extremely valuable to us, in so many ways. Lilli took her first standardized test ever with this ipad. She can use it to make choices - whatever choices we program into the Proloquo speech communication program. She uses it with her ABA therapist in many of her programs. She has several favorite apps that have taught her a lot. The ipad is her number one source of self entertainment. One of her only ways to entertain herself, actually. (See my last post.) I actually cannot list all of the reasons why the ipad is so important to us, there are too many.

You now may be wondering: do we have insurance coverage on this ipad?

Hmmm. Great question. I do not know.

Last time this happened, I called the school, and the insurance plan had just run out, and they had not renewed it. They graciously forgave us and replaced it anyway.

This time...well, this time my plan is to have my husband make the phone call. I do not know how much grace this district has left to give us. We have been extremely blessed that they even gave us an ipad to use in the first place. Maybe they will get her another one. Maybe they will tell us: too bad. And we will say, "We understand. You trusted us with this device, and our daughter gave it a bath. We are so very sorry."

Either way, this will not stop us from trying to teach Lilli. She has a terrible fascination with water, and obviously no common sense about putting two of her favorite things together, the ipad and water. I wondered why she did it. I think it might be as simple as the curiousity of what it would be like to play with her ipad under water. Kind of like when I was a kid and I put the iron on the carpet, and then there was a burn mark shaped like my mother's iron in the middle of our green carpet for about ten years.

Why did I put the hot iron on the carpet? My feet were cold. Do you follow? Please don't make me explain that one in any more detail. I just told my husband the story and he laughed and said, "Well there you have it, that was equally as dumb as putting the ipad in the bathtub."

Kids do dumb things.

Maybe the ipad will dry out and survive. I'll let you know. But I forgive Lilli. It's better than an iron mark in the middle of my carpet.

My post about Carly:

Links about Carly: (you need to click on her facebook link, just to see it.) 


Saturday, January 4, 2014

Gift Giving, Toys and Autism, and Putting Elmo to Rest.

It's January and I am so glad. Not just because it is a new year, but because December is over. It was a tough month.

We were all sick on Christmas. I will leave it at that.

There were great things about the December of 2013. Lilli got to go to school and be in a class for Polar Express Day. She went in pajamas with her homebound teacher, Leslie, by her side. She went caroling with her new class that she visits twice a week - other mentally high-functioning fourth graders who have autism. She seemed upset at first. I wondered if it was because she is non-verbal and cannot sing. I took a few pictures and went over and whispered in her ear, "You don't have to sing, Lilli! Just smile! You're just spreading happiness at Christmastime." Then I left to go to Josh's classroom, and whispered a quick prayer that she would just be happy. Leslie told me she DID have a great time and was happy after I left, hugging with classmates and laughing. Lilli has some new friends at this school that really adore her. I was so thankful. (I just didn't get a picture of the happy moments.)
Caroling in the main office. Lilli  is in the back, leaning against her homebound teacher, Ms. Leslie. Not happy yet. But happiness came later. Maybe it was because her embarrassing mom was there taking pictures of her, who knows.

Gift Giving Challenges

As Christmas crept closer, I felt myself begin to slide down into my annual mental pit of feeling upset and frustrated about Christmas shopping for Lilli. This is the part of Christmas tradition that sends me into mixture of excitement and dread.

I love, love to give thoughtful gifts. I think it might be my "love language." I keep a "gift idea" notebook and write down ideas for people all year long. If time allows, I love to make gifts for people. If money were no obstacle, I would haapily act like Santa Claus, all year long.

For the last five years since we made this life change, moved and Jasen went back to school, I started the habit of Christmas shopping at yard sales for my kids during the summer. For obvious reasons- living on student loans with three children- we needed to keep the gift budget extremely small, and I discovered that there are lots of strangers who sell perfectly awesome toys, cast off from their (very possibly spoiled rotten) children, in their garage sales for practically nothing. Maybe these people have money to throw away. Maybe they are very bad at budgeting. Maybe they forgot that they spent $20 each on those four Disney princess dolls in perfect condition, and plopped them on a card table masking-taped together with a $1 price sticker just to get rid of them. Or maybe they just wanted to bless someone who could not afford to buy them new. Thank you, perfect stranger who gave away like-new Disney dolls for $1, Chloe loved them.

My kids had great Christmases and birthdays while Jasen was in chiropractic school, partly because of this planning, partly because of the awesome year-round yard sales here in the south, and mostly because this weird thing happens with me. I just think of something we need or I would like to give to someone, and I find it a week later at a yard sale for a quarter. I sometimes specifically pray to find one thing, and there it is in someone's garage, like-new for a buck. God knows what I need. He knows what I want. He is a crazy awesome Giver. People say "God will provide" a lot, but not everyone knows what that really means. I'm telling you, this one way God provides for us. Ask anyone who knows us well, and look around our house. It's pretty amazing.
Five presents each. One from Santa, one from Jesus, three from Mom and Dad. That's how we do it here. If Santa can give presents, Jesus can too, goodness.

Those lean school years taught me how to get creative and find ways to give great gifts on a shoestring budget. I learned much about money and spending. I learned you do not have to spend gobs of money in a panic in late December on expensive new plastic toys to make a child extremely happy on Christmas morning. You do not have to wait until the weather turns cold and then rack up hundreds on your credit card for a few moments of screaming on December 25th, only to faint when you get the bill in January. It's a weird thing we Americans do every year. It does not make much sense.

Josh and Chloe are easy. This fall I went to a neighborhood yard sale and found Chloe an awesome disco ball light and Josh a huge box of Teenage Mutant Ninja Turtles and superhero action figures for a few bucks. All were things they wanted and asked for. Thanks, God. (We put "from Jesus" on the gift tags. Cause they were.) Gift ideas, and the process of finding them is a thrill - when it's for Chloe or Josh.
We've got almost every super hero now. Even Aquaman and Wolverine are in there somewhere new in packaging. Five bucks for the box, thank you, kind yard sale mom who just wanted to get rid of her teenage son's junk. Chloe wanted Uno Moo a few months ago. $1. 

Lilli, however, is not so easy.

Searching for a gift for Lilli dredges up a mixture of unwanted emotions from deep within me. Inside, Lilli is almost ten. Outside, Lilli is much, much younger. The ages collide for her in many situations. One of them is toys. When I begin to plan Christmas for Lilli each year, I feel a small sense of hopefulness and the challenge of finding a fabulous gift - mixed with sadness and frustration. I have no idea what to get her.

The longer I dwell on finding a good toy to give to Lilli, my oldest child, the worse the feeling gets. I hate it.

I know it must sound so completely shallow. It's just that Christmas shopping reminds me of what Lilli cannot do. Playing with toys is something that has not come easy to Lilli. For Lilli, even learning how to play has been very hard work.

Learning to play is part of her therapy.

For those who are confused by this statement, I will share an experience I had when Lilli was much younger.

Autism and the Hard Work of Playing

When Lilli was four, she received the autism diagnosis. The doctor strongly recommended that she receive at least 30 hours of ABA (Applied Behavior Analysis) therapy a week. Yes, 30 hours a week. We talked to the school district where we were at that time, and they were all, "Huh? What's ABA? We don't do that here, no." (It costs a district money, you see. On a side-note, when we moved here we discovered that not every district is so stingy.)

So I went to a special school for children with autism and paid $500 to take a three-day seminar on ABA therapy. I was the only parent there. I sat with a roomful of special education teachers (from other districts who knew what ABA was) and therapists. I was like that annoying, nerdy non-traditional student who asks a million questions, takes notes and pays close attention to every power point slide. Everyone else seemed to count down the minutes to the snack break and tried not to fall asleep, because they were only there to get credit points toward their certifications.

I was riveted by every video clip example and page of notes. I was hooked. The idea of ABA gave me hope for Lilli.

Several times, we were invited into the special autism school to observe students receiving ABA therapy. They placed me outside a room of a four year old boy, bless them. They did that on purpose. He was an exact male version of my Lilli. He could not talk, and he did not know how to play with toys. He was not potty trained. He cried a lot. He did not know what to do with himself. He was so unhappy. I was amazed to see that my child was not the only one in the world like this. In fact, lots of children with autism are like this. I won't say most, because I really don't know. But maybe.

A therapist and little boy were in this room that was about the size of a large walk-in closet. There was no door. I sat on a child-size plastic chair in the hallway outside the doorway. I balanced my pen and notebook on my lap, and observed. I took it all in, and thought of Lilli the entire time. It was nothing I had ever seen or known about. The therapist, a laid-back 20-something guy wearing jeans and an untucked button-down shirt, was lovingly and patiently trying to teach this boy to play. He took a moment and explained to me that every time the boy even just made an effort to touch a part of a toy, he got a tiny treat. I think it was a tiny piece of a cracker or something.

There was a toy vacuum on the floor. My three year old Josh had one like it last year and he ran it all over the house and pushed all the buttons. This boy just looked at it blankly for a second and then stared at the wall. I watched with immense interest as the therapist showed the boy over and over...and to touch one button on the vacuum to make music play. Then he would encourage the boy to do it.

This was hard work for the little guy. So hard. He obviously did not know how to touch the toy's button to make it do something. No matter how many dozens of times the therapist took his little hand and showed him, the boy would not do it on his own.

It wasn't the cool, fun, vacuum's fault. The therapist explained that this was a new toy this week. He was teaching the little guy how to play with it, and I was fascinated with the whole process.

He tried with other toys too. There were cars, action figures, boxes of awesome toys any typical four year old boy would love to touch, play with, imagine with, zoom around the room while making little boy car sounds. There were a few toys that the little boy did pay attention to. Those were the ones he had already "learned" to play with. He took a small truck and ran it back and forth on the table for about three seconds. That, I was told, was progress. They had worked for a long time to get him to do that. Many hours of teaching, and bags of snacks.

If anyone reading this is thinking, "Why such torture? Who cares if he doesn't want to play with those toys, let the poor kid do what he wants to do." I struggle to covey to you: that's just it. He did not want to DO anything. He sat and stared at the wall and cried. A child's whole job - whole life - is to play.

This little boy did not know how to play. And neither did my Lilli. It had to be taught.

This is autism.

Lilli and Elmo: True Love

For a long time, Lilli did not know how to make toys work. I think it might be called a processing problem. She could not make that connection in her brain that she had to push a button to get a toy to do something. It took a very long time to teach her. Weeks. Months. When she was one year old, she played. She reached out and touched and smiled at toys. She had words - real words, like ma-ma, da-da, dog, we remember she even said "poop." I remember even getting her to say the word "donkey." She began to regress around 15 months. She stopped playing with toys. It was like she forgot how. She sat in a corner touching sunspots on the carpet for hours and looking with fascination at her own fingers, while piles of fun toys sat nearby. She cried a lot. She watched movies.

That's an autism thing too - the sunspots and fingers. She would run a piece of ribbon through her hands repetively for an hour.

We were desperate to get her back. To have her play with toys, talk, be happy. 

The first time I remember her really "getting" how to make a toy work and playing by herself was when she was about four years old - shortly after we began ABA therapy with her.

My sister got her "Dress Me Elmo." If you squeeze his hand, he sings this little Elmo song about how "Get-ting dressed, there's nothing to it, now that we've - learned - how to DO it!" And I could sing the next part to you by heart, about zipping and buttoning...Anyway, Lilli was ga-ga over that little singing Elmo. But she could not get him to sing by herself. I would press his hand for her, and she would crawl off so super happy for about ten seconds. Then he would stop. And she would cry, and bring him back to me.

Fifty times in a row. All day long. The mood swing was ridiculous. Singing: HAPPY! Silence: SUPER MAD! Happy! Super mad! Every thirty seconds. She did not understand that she had to squeeze Elmo's hand, no matter how many times I showed her. This could be due to brain damage, or autism, or both, I don't know. It was very frustrating. Playing with Elmo was an extreme love-hate experience.

We hired ABA therapists who showed me how to take her hand in mine and make her hand press a toy's button, and not do it for her. Sometimes she was rewarded by a treat. Sometimes the music or action from the toy itself was enough of a reward to motivate her to learn. I will never forget that it took days and days of listening to Elmo sing that song and Lilli sob and bring it to me over and over. For hours straight.

I think this was teaching her muscle memory by taking her hand and making her hand do it.

And she finally learned.

She learned to press his hand all by herself.

What a glorious moment that was after days of Elmo torture, when she realized she could do it herself. To this day, five years later whenever I hear that Elmo sing about tying his shoes, I remember that he was the first toy she ever learned to play with by herself after her autism diagnosis. Well, she doesn't do the "dress me" part. She can't zip up his coat or velcro his little shoe. We never worked to teach her that part.

After Dress Me Elmo, I went bonkers trying to find toys that Lilli could play with on her own. Pizza Elmo was another big hit. We would do hand-over-hand and teach her what to press, and after a few days or weeks, she would be able to do it herself. It was a whole new world! We had the most annoying toys ever! The worst one was this big, super loud whirring thing with big buttons that had parts that spun around while music played under all that loud racket. But I was just so happy that she could finally entertain herself. As long as there was a big button somewhere that she could press, she could play with it.
Loudest, most annoying toddler toy ever, with nice big buttons and fun spinning action. Even the therapists hated it. I think we had a party when we got rid of it.

If we took a few days or weeks to teach her over and over where the button was, she could eventually get it. And then I would have a few blessed minutes of "peace" to do laundry or something else while Lilli played with a toy by herself - at the age of five.

As the years went on, we went through dozens of toys with simple buttons. And then we realized that she had more going on in her mind than we ever realized. I started to get excited about technology, thinking that she could use a Kindle to read books, or play new ipad apps.

Soon I realized that even those things would take a very long time for her to learn. It's just how her brain works.

Christmas Toy Shopping for Lilli

On Christmas morning, I want my children to open one fun gift that they love - just one special one that they shriek about and play with all day. One that I spent time thinking about and finding. One that I know they will be excited about when they go to school after break and everyone asks them what they got for Christmas.

I love to find the perfect gift for someone. And each year I have a tough time figuring out what NOT to get for Josh and Chloe. I narrow it down to a few gifts each.

But then there's Lilli.

I will see a toy I would love for Lilli to have. And then I think about it and I usually realize: it's too babyish. Or it's too complicated - she won't be able to play with it because it requires fine motor skills that she does not have. She won't be able to use it by herself, because she won't understand what to do with it. We will have to show her over and over how to play with it, and it will frustrate her.

Maybe it was wrong of me, but as I planned my gift lists, I just did not want to buy her another Elmo. I wanted her to move on. I want to find something that is pretty "cool" for an almost ten year old to play with, that she is able to do on her own. Had she moved on? I was not sure.

Maybe I'm the one that needs the therapy, not Lilli.

What does a ten year old do to entertain himself or herself? Besides watch movies or use a device?

I really was stumped.

I posted a question to the parents of children with cerebral palsy group online. I asked them what their older children did to entertain themselves, other than using an electronic device or watching a movie. All the parents agreed that this is such a tough issue that they all struggle with. They detailed how they are always either entertaining their children, or their child is using a touchscreen device. Because fine motor and gross motor skills make most activities very difficult for most kids who have CP. And self entertainment is difficult for many children with autism. Unless someone is sitting down helping Lilli, she cannot entertain herself unless she has the ipad or a movie, or a simple toy with one button. And kids do evetually outgrow Elmo. Well, maybe.

Was she finally over Elmo?

Not Down with "Elmo Up Up Up"

Right before Christmas, I was still looking for something for Lilli. I went into a thrift shop, and there was an Elmo on the shelf. He even had batteries. He sang a song about how Elmo loves to be picked "Up up up." I held him and stood there for a long time, listening to him and thinking. I felt a little excited that I'd just found a cheap Elmo just in time for Christmas. But then I felt a little sad, and I hesitated. I wasn't going to give Lilli another Elmo this year. It reminds me that her progress is so painstakingly slow. I didn't want her to keep playing with Elmos. I wanted her to move on, but move on to what...I did not know.

After a long few moments of listening to him sing, I gave in and bought him.

I hoped that maybe she would play with him and be excited about him, since I could not think of any other toy to get her.

She was not excited about him at all.

She got some cool clothes. She got new movies from Nannie and Pop pop. We pulled everything out of her stocking for her, and she didn't know what to do with any of it.

She got a "question-a-day" diary. My thought was that we can put the choices in her communication device and she can choose the answers. Maybe if she starts typing better this year, she can type things and I can print them out and put them in the diary. It's a long term, dreamy-hopeful goal.

She opened the Elmo, and didn't care.

Jasen said, "She's over Elmo. She's not into him anymore."

She played with her ipad and watched youtube movies on Christmas morning. Meanwhile, Chloe and Josh each played with their new favorite toys.

Lilli didn't play with her Elmo. And you know what? It's a good thing. She's moved on. Where we go from here, I do not know. But she will be ten at the end of this month. Her birthday gifts will be the next challenge for me. But the fact that she can make choices, and she doesn't care about new Elmo toys anymore....that is a good thing. It's progress.
Almost one per year. Except for the years when she got two. If there ever is a game show where contestants win by singing all the words to Elmo songs, I would win.  

Progress is so slow, it is hard for me to see it sometimes. I need reminders that we are on the right track, that I am doing the right things, that I should never give up.

I don't know where we go from here, but we are headed somewhere new.

Farewell, trusty Elmo toys. We have so many of you. Your songs and voice are unfortunately burned in my brain forevermore. But you are headed for Ebay.

It's almost like a me.