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.

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