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:

Hope.

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: http://wherelilliblooms.blogspot.com/2012/04/unraveling-lillis-typing-mystery-with.html

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

http://www.facebook.com/carlysvoice 
http://www.amazon.com/Carlys-Voice-Breaking-Through-Autism/dp/1439194149 


 

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 over...how 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 gift...to me.

Progress...and "Not Making Progress"

I have really been struggling with something for over a month.

At first I thought I was just feeling sleep-deprived, overwhelmed and moody, but then I realized... no, that's "normal."

This was something more. I have been really down.

I think it started with a short conversation I had with a therapist who has worked with Lilli for several years.

She told me in the beginning of November that she will probably discharge Lilli from her therapy services, because Lilli "is not making progress."

And I just cannot get past it.

I am so hung up on those words, "not making progress," it is driving me crazy. I usually let those types of comments roll off. I have tried to understand her point of view. I have tried to think positively, that sometimes change is a good thing.

This is not a defining moment for Lilli. Of course she is making progress. She has always made progress in some way. You just have to step back further, and look at the big picture with Lilli. She takes a very long time to learn how to do things. Her progress is so slow that sometimes it is like trying to sit and watch the earth turn, or watch a seed grow into a tree. But she IS making progress.

I am not angry with the therapist. I think that she is great. She has done a lot for Lilli. Over the past few years, she has been very helpful and I have a lot of respect for her and her work. I guess I am just now learning that sometimes, therapists think that if there is not enough progress being made within a certain period of time, it's not really worth it to continue working with that child. Sometimes people "plateau" in their therapy, and they get stuck in a rut doing the same thing each week, not moving forward.

I told the therapist that I strongly disagreed about discontinuing therapy, and that I feel that it is very important for her to keep going. Lilli has learned to do a lot of things, but she has SO far to go.

We still feed Lilli with a utensil after almost ten years. She can pick up a sandwich by herself now. She can pick up bites of food and feed herself with her fingers. But she cannot use a utensil. She can't "stab" food. This is a skill she has been working on for many years. If we sit next to her and stab every bite for her and hand her the fork, she will put it in her mouth and put the fork down. (Hey, that is major progress from the days of throwing the fork across the room, trust me.) But how long does a therapist work on a skill until they say, "Well, she can't do it, and we've been working on it for X amount of time, so we are going to just give up on that one."

Does this mean I will be spoon feeding Lilli for the rest of her life? The therapist says she has been working on it for months, and she is just not able to use fine motor skills to turn a fork with her wrist and stab a piece of food on a plate.

I look at stabbing a piece of food on my own plate in a new way, for the first time in my life. What a tiny thing I take for granted.

I guess if I knew for sure that it would never be possible for her to learn to use a utensil, I would deal with it and eventually be OK with that fact. But I am not convinced that she is unable to learn how to feed herself. I think she can learn to do it. It might just take a very long time. This is not the only skill Lilli is working on with the therapist. There are others. The progress has been incredibly slow, creeping along over the years.

I guess too slow.

I think this is one of my biggest challenges as Lilli's mom. How hard do I try? How long do I push or wait for something to happen until I give up and learn to accept things for how they are? Where is the fine line between faith, helping, advocacting, working hard against all the odds.... and denial? When does a "goal" for a special needs child officially get checked off as "unattainable"? When do I allow myself to stop trying so long and so hard?

I think the answer is never.

But I am new at this. Guess I should ask another special needs mom who has been there for a long time.

I don't want to feel like we are giving up. Not now. I have put so much effort into getting her to this therapy for several years. Every Monday, getting Lilli to this therapy is a three-hour chunk out of our lives. I want some tangible return. And I do have some. I just want more.

Our therapy schedule is nuts. Monday is only one day out of six days straight of therapies.

Our therapy schedule for Lilli and Josh. Oh, Chloe's on there once, for dance class.
Everything else is school and therapy. I must look at this every day, even after all this time.

On Mondays, Lilli's homebound teacher wraps up morning school at our house, and helps me get Lilli ready and into the car. I go pick up Josh from his special needs morning preschool class, and we drive a half hour to the clinic. They both always fall asleep. When we get there, I wake both of them up, put their shoes on them, maybe give them a few bites of a snack, and walk holding Lilli's hand while often carrying sleepy Josh and two or three bags of stuff. One of them always tries to run away from me.

Always. I keep thinking that one of these days, Josh won't run.

I don't know about Lilli. I have to tell myself that she is blessed to be able to run at all. But honestly, I do not think these positive thoughts when chasing her in the busy parking lot.

I have chased them in the parking lot and in the lobby many times. (Yeah, we own a "kid leash." It's not that great and they are too big for it.) I just try to always have a good grip on their hands, with bags slung over my shoulder. Always, I wish for a magical person to suddenly appear and say to me, "Oh! Let me help you!"

But it never happens.

Up we all go in the elevator to the second floor. The door opens and I chase them yet again. Someone always has to go potty. Into the public bathroom with the special fold-out potty seat (hence one of my bags) for Lilli for 10-15 minutes of "Don't touch that! Stay here!" and holding Josh up to the sink to wash his hands while making sure Lilli does not wander off or touch anything.

Trust me, I have asked myself many times if it was really worth all this effort. And every time I thought about it, I always came up with the answer: yes.

Yes, it is worth it.

Lilli has therapy for one hour, while I keep Josh entertained/corraled in the waiting room with snacks and toys. I shake off the feelings of being a bad mom while I check my email on my phone and Josh watches Disney Junior. I could play with Josh or read him a book, but I don't. I need to chill. Then Lilli comes out and I herd them both back to the elevator... the lobby... the parking lot... the van.

We drive the half hour back home, where I make them lunch and get ready for the next therapist to show up at our house.

It's not easy. I do not enjoy it. But it's a big deal to me. It is worth it. I do it because I think it is important. It's good for Lilli. She needs it. She enjoys it. Can we live without this therapy? Sure we can. It would not be the end of the world. But I just think she benefits from it in many ways.

I do the same thing the next day all over again, with Josh. Josh has one of his therapies at a clinic on Tuesdays, also a half hour away. Each day is a new day of therapies and driving for us...so my children can get help from someone else besides me. I cannot do it all. I need help, and I am not too proud to admit that. The running around is exhausting. Some parents choose to do it all on their own. Either way, it's hard. I choose to have a team of people involved because I like teamwork. I love ideas other people have. It's good for my children to have new faces and fresh ideas and activities, because I get burned out.

So when the therapist told me she will wait until after the holidays to see if Lilli makes any progress or she might discharge her, it just filled me with such a sense of defeat. Because it takes such effort to even get there each week. I guess I can't explain it any better than that it feels as if I spent a ton of time going to practice, only to be cut from the team. (I know I am sounding dramatic here. Sorry.)

Instead of being strong and level headed, I just sort of crumbled. I have let negative thoughts creep in. Unwanted phrases have been haunting me.

None of this matters. It will always be the same. She's not making progress. All of this hard work...you're in denial.

I stand in the bathroom, while changing her, and in my head I hear, You've been potty training her for six years. It's still the same. You're being ridiculous, chasing a dream. Give it up.

I sit at the table feeding her, and I wonder, should we keep trying? Will she ever get it? Maybe I'm not trying hard enough. Maybe I should do it differently. I'm not being consistent. I need to try harder.

I want to tell this therapist that her words have absolutely crushed me. It makes me feel like all of my help and efforts and hope and goals for Lilli...don't matter.

"Not making progress."

I could cry again right now just thinking those words.

But it isn't true. I will have to battle this phrase right out of my mind for the next several weeks and banish the negative thoughts that came attached to it.

These words haunting me, combined with the challenge of Christmas coming, that's where I am right now. I shared with my sister that I've been struggling. She suggested that I write. So here it is. I am making myself write.

Maybe it will help.

Because when I write, I reflect. I remember. I see things in perspective. I look at the dozen or so posts that I have not ever put on the blog, and I think of all the ones I could write, about things that are exciting and hopeful to me. It is tough, trying to be hopeful all the time. Trying to see progress when someone tells you there isn't any. Trying to look at strengths when there are so many weaknesses. Trying to focus on what is important.

Words are very powerful, and teachers, therapists, and doctors have an incredible cabability to completely form or change a person's perspective. When a professional tells a parent something negative, it might take dozens of friends and family members weeks or months to undo that negative seed that was probably planted carelessly. Weeks of encouragement and "Don't listen to them" comments to try and undo the damage of the "professional opinion." Months of questioning, is this right? Is it worth it? and wrestling with doubt.

I guess my hope with this post today is that it will remind those who work with parents to be very careful with their words when talking about a child.

Always give hope.

Not false hope, just some hope.

As always, I will be truthful with this therapist. She knows that I am disappointed. I do understand her reasoning, even though I do not agree. I will just have to get past this and focus on other goals.

We will get through the month of December, and then...we will see. I am feeling a little better from writing all of this out. But I am about to post this, and it is a rainy Monday morning. In a short while, I will be walking through the rain with a tight grip on two squirmy children in a parking lot with three bags.

Trying to stay positive.

Trying to be hopeful.

Trying...to keep trying.

How Lilli Jumped from 15 Months Old to Second Grade... with One Test.

Over the last few months, I have neglected to tell you that Lilli got a new communication device. I think I may have started to write a post about it once. But this summer was all about painting and fixing our new home and moving into it. The whole amazing experience of Lilli's newest communication device and how she used the ipad to take a standardized test kind of got lost in all of that craziness. She now uses both the ipad, and a new device called the NovaChat. The NovaChat is what she is now learning to use to communicate independently - and that will have to be a different post. For now, I will focus on the standardized testing.

It all started when we were talking about moving. Jasen was getting ready to graduate from chiropractic school in March of 2013, and we were once again at the crossroads of where to go. We thought we were going to move away. I guess it was fall of 2012 when I began to make plans for Lilli in preparation for this. I told the school district that I wanted documentation in her permanent record about what she is able to do. (I am a "think far ahead into the future" kind of mom.)

This was important to me, because just one year ago, her school assessments still said she was at a "fifteen month cognitive level."

Fifteen months.

Please let that sink in a moment, if you have read some of my other posts about Lilli, especially way back when she started to type on the ipad.

There was no way that I was going to let her school record say that, after she has been working on second and third grade level material for over a year. It is in her mind. You just can't see it.

Not because I care what other people think, but because I care about her education - we had to find a way to "prove" that she is smarter than a baby.

If we moved to another school district, I did NOT want to have Lilli start back at square one. I did not want to have a new school district look at her assessments in her file and doubt what she could do, thinking that her wacko mother was completely disillusioned in believing this child could actually do some third grade level work.

I did NOT want her go go into a special education self-contained class where she would be re-taught the alphabet and letter sounds that she probably learned when she was four and five.

I began to ask about asessments.

It is extremely difficult to assess a non verbal child with autism and fine motor issues that hinder her from writing. We know how to assess her, but there did not seem to be a standardized test that would do that. Schools want official standardized testing results, with tests that are administered a certain way. My goal was to prove on paper - officially -  that Lilli can and does understand, and deserves an appropriate education. And by "appropriate," I mean close to or on grade level, but with extreme accomodations. And by extreme, I mean a teacher who is willing to think completely out of the box and work one on one with her to discover what she can do, and think of imaginative ways to bring out that hidden intelligence.

I knew based on her special education path so far, that it would take a special person in a new school district that did not know Lilli, to see her potential and have that faith in her abilities. She might not be able to put blocks in a shape sorter, but she knows her multiplication facts. Darn it, there should be a way to prove that. This is the kind of stuff that makes me so mad and frustrated, especially as a former teacher. I hate that a standardized test is so important in proving to the world what a child knows.

At her IEP meeting in the spring of 2013, the adminstrators were supportive and helpful. We brainstormed. We realized that the only way to do this would be to figure out a way for her to take a standardized test.

So despite my hatred for standardized testing (because as a teacher, I gave many of those tests years ago - enough said) we began to rally for Lilli to take a standardized math test. "We" includes her parents, her homebound teacher, her ABA therapist, her speech therapist, and her occupational therapist. Lilli has a great team right now. We are blessed. It is incredibly important to me to have people that work with Lilli who truly believe in her intelligence and potential. I look back with sadness on years where we had various people who did not believe in Lilli's intelligence and potential. If even one person on this team had said, "Well, come on, Jennie. Face reality. She will never be able to take a standardized test, and that's OK..."

Nope. No more of that. I do not want people like that working with Lilli. I had a therapist two years ago sit me down and try to get me to "face reality," and work on what Lilli "really needed." (In her opinion, that did not include academics.) You want to know what I did about that? I told the school to remove Lilli from that woman's therapy services immediately, that I did NOT want her working with Lilli ever again, and I did not want her to attend any future IEP meetings or even have anything to do with Lilli. Not listening to you, negative professional with "twenty years of experience." 

A few weeks after the IEP/brainstorming meeting with the principal, assistant principal, and teacher, Lilli took a standardized math test. Her teacher and therapists only had a short time to prepare Lilli because of the testing window, but she had been "taking" multiple choice tests with cut up paper for many months. She took the math test on the computer, and used her ipad to make the choices. Un-touched. On her own. No "hand-over-hand" guidance. She took another standardized alternative test for English/language arts, math, and social studies, which used cards that were laid out on the floor for Lilli to choose her answers.

The nitty gritty of the experience would be a different post, with exactly how we did it. One day I hope to really write all of that down for other parents who need guidance in helping their children through a similar educational path. It was a lot of hard work on the part of the teacher and therapists. For now, I will post a few videos of the very beginning stages. In the beginning, it was all experiemental. We figured it out as a team, through trial and error. We used tape, old overheard projector sheets that I cut up, and Vis a Vis markers, along with the ipad. Then, she practiced.

The end result was that Lilli learned to take a multiple choice test with the letter choices on her ipad. When she took the standardized math test on the computer, we went to the school, the teacher pointed to each question and answer choices on the screen, and Lilli chose her answer on her ipad in front of her. Then the teacher recorded which answer Lilli chose.

Lilli took that standardized math test in the spring of 2013, when she was a third grader. She scored around the end of first grade, beginning of second grade for math. Then she took the test again this fall. She beat her previous score by around 20 points.

Chloe is in first grade right now, and just took the same test. Chloe scored very high on her math test, above grade level. I cannot compare these two extremely different children of mine. But for the sake of pointing out that Lilli is really smarter than most people give her credit for, I want to tell you this:

Lilli's score beat Chloe's score.

Lilli is nine and still has a ton of catching up to do. She missed a lot. She spent way too long learning the alphabet and number identification because no one could assess what she knew. Any person who would meet Lilli today would think that she is on a baby level, because of the way she walks, how she cannot talk, and plays with the only toys she can use with her fine-motor skills - toddler toys. But she really is smarter than a baby. I am not pushing for Lilli to "be" anything, to have a certain score...no. I just want an accurate assessment of what she does understand. And since there is no such assessment for Lilli, we had to figure that out.

I never thought I would be thankful for a standardized test. But I am. I am so proud of Lilli. We will keep working. And oh, incidentally, we never moved. We stayed in the same school district. Jasen found a job here close by, and we bought a house in the district. We chose to stay here for now, for Lilli's sake. We feel very blessed with the team of people she has right now, and we do not want to lose that. In the very near future, things will really change. Possibly as soon as this coming spring/summer.  Lilli's ABA therapy will run out and we will no longer have it. I cannot think about that right now, it makes me feel panicky. I am living for today. Trying to beat the clock. Trying to cram in as much catching up and learning as possible before things change.

The other "alternative" standardized test turned out to not be very helpful at all. Her results came back and she scored a "3 out of 4." The scores were completely general, non specific and unhelpful to me as a parent. No grade level, no skill level. Just said that she was "progressing." However she did get a lot of practice with multiple choice testing, and it was a positive experience. We are going to keep focusing on the test that all the other kids take. The school-wide standardized test.

Fo now, we will continue to build up that school record with test scores that do mean something.

And I may be the only former teacher and mother in the world to proclaim this:

I love standardized testing.

Because, it proves, on the world's terms, that Lilli is smart.

If you watch these video clips, it's not the questions and answers that are important. It's the method. This was the first day that we tried to show Lilli the concept of a multiple choice "test." It was all new to her. Also, you will notice that she looks away a lot. But that does not mean she is not listening. She is learning. Transferring the choice she wants to make from the top ipad to the bottom ipad is a new challenge. We used several different apps that had multiple choice formats. We used our ipad to make a multiple choice touchscreen board for her to select answers. The speech therapist brought her ipad and used it for the apps. We taped the clear "A B C D" choices onto her ipad screen next to each choice. The concept began to make sense to Lilli after we worked on this for awhile. She ultimately took the standardized math test without being touched. Yay for "thinking outside the box" with a team of people who care about our daughter!