How We Saved Our Wet Ipad After it Took a Bath

I see you, desperate ipad owner, Googling my first wet ipad post. Hopefully, you have come to the right place. I have also been a desperate owner of a wet ipad.

Two different wet ipads, actually.

I wrote about our first wet ipad experience a year ago, and I can see that my first post is still Googled every week. Probably by a mom or dad freaking out, holding a sopping wet expensive mess swaddled in a towel while yelling at someone and googling "Wet ipad" at the same time.

Such a shame, because that post was probably not very helpful.  I am sorry that my first experience and post was such a disappointment. Putting that wet ipad in the bag of rice did NOT work for us. Alas, that ipad never came back to life.

This wet ipad post might actually help you. There is hope: our second wet ipad came back to life! Now working as perfectly as it was before it took a short swim in the tub. No side effects at all; it has completely gone back to perfection, much to our surprise. I will tell you how we saved it - quickly, because you are probably stressing out and skimming this post anyway.

Our ipad was plunged into the FULL bathtub by our daughter who has special needs. Yep, pushed down under water. I do not know for how long...and does it really matter? Because the ipad was COMPLETELY UNDER WATER. Our daughter has a fascination with water, and don't ask how it even ended up in the tub in the first place. All that matters is that it was completely submerged.

We put it on the heater so the heat could go up into this hole.
Good idea? Probably not, I guess it could have melted something.
But hey, it worked!

My husband propped the toweled-off ipad up on the heater. We left it there for a day. Then I picked it up and tried to turn it off. We could see water underneath the screen. No, not the decorative little water droplets that are just there to tease you - and can I just say, that joke is just plain mean, Apple. No, there was a huge, obvious puddle underneath the glass in the middle of the screen. It was tricky to turn it off and took a few tries. Once it was off, I left it alone for two more days. Propped on the heater so that the heat could go up into the charging hole.

Please ignore the dust and focus on the handle
where we propped the ipad.

I will show you a picture so you can see that we propped it on the little handle that adjusts the angle of the vent. This allowed the ipad to be sitting right in the middle of the grate, or whatever you call that thing. This also happened around the time of the "polar vortex," so the heater was working hard.

The actual wet ipad. NOT a dramatization. 

After (im)patiently waiting, I turned it on and held my breath. It worked! The first few days, there were two little teeny streaks of water still under the screen, but the apps all functioned fine. A few days later, the streaks were gone. I probably should have left it on the heater for one more day.

Yay for dry, January heaters that make you wake up desperately wanting a drink of water. I think our last ipad got wet in the middle of summertime, and rice seemed like the only best option at the time. This time, when I blurted, "Quick put it in the bag of rice!" (because parents like us happen to have a gallon size zip-lock bag full of rice stored on a shelf for wet device moments such as these - true story) my husband said, "No, that didn't work last time. Let's try something else." Good idea, honey. It worked.

(I just want to add that if his idea had been a bad idea, as in... if the side of the ipad completely melted and oozed down into the heater vent, I would have been mad at him for the next ten years. But fortunately for all of us, that did not happen.)

Our ipad is back to fully functioning, the water is all dried up and gone, and we have all done multiple happy dances about it.

Best of luck to you and your ipad. I feel like this is where I should insert some kind of disclaimer or legal mumbo jumbo: this advice is unofficial, please don't sue me or send me mean comments. This might even be reeeeally terrible advice. You should not even really listen to me, because I am the one whose child managed to get not one, but two borrowed ipads from the school district completely wet. All I know is that it worked this time, and the huge bag of rice did not.

However, if you have a victorious wet ipad story to tell, please share in the comments. Other desperate wet ipad owners will thank you.

Good luck!

The bag of rice that is still floating around. Oh, I have
two message buttons in there that...um...our daughter also
threw into the bathtub. Have not checked yet to
see if they still work. Guess I should have balanced them
on the heater.

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 


 

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!

Counting Blessings Outside the Walls of Bethlehem

Chloe talking to a woman in the "Bethlehem marketplace." Such a neat experience for her. 

It is Christmas Eve morning.

I sit here and pause, my fingers hovering over the keyboard. Where do I begin? How do I process what happened last night and how I feel about it? My eyes look over to the fridge, covered in artwork by my six year old, and a sweet cardboard wreath that Lilli made with her therapist Morgan. I think about tomorrow and how great it will be to be together as a family, celebrating Christmas. And I realize... I do know how to begin.

We are blessed.

This is how I will begin, reminding myself how very blessed we are in so many ways, as I tell the difficult story of last night.

Last night my mother in law and I took the three kids to a live nativity. It was not just any live nativity. It was a realistic set of the town of Bethlehem you can walk through with actors and costumes and animals...even a camel. Not bad for a free to the public event at a local church. We drove half an hour to get there, so excited to have the kids experience what we usually read about in books and try to explain with pictures. I could not wait for Chloe to engage in a conversation with a "Roman Guard" or meet "Mary and Joseph" with a real baby "Jesus." We had never done something like this before. I could have left Lilli at home with Jasen and my father in law, who were cooking dinner. But I wanted her to be a part of the experience too. I just knew she would love it.

When we arrived, I asked the parking attendant if there was a handicapped spot left up front. He said yes and waved us through, to my relief. We parked next to the plywood walls of Bethlehem where people were lining up to go inside.

I saw the tiki torches as soon as we pulled up, and thought, oh no. They were lined along the top of the temporary wall that surrounded the outdoor event. Not that they had tiki torches in ancient Bethlehem, but they were there to give light and create a more realistic "no-electricity-back-then" kinda feel. But for us, fire and smoke strike fear of possible seizures. Lilli's seizures are triggered by a list of things, and we avoid smoke of any kind...even birthday candles. (When we celebrate birthdays, candles are blown out on our back deck, while Lilli plays inside.) I hesitated and thought to myself, well, they are up high. Maybe it will be OK. Really I was being selfish. We had driven all that way, and I wanted to take my kids to see the live nativity. Lilli had not had a seizure in a month. I hoped since we were outside and the torches were up high, that the smoke would just go up and be carried away. That was just plain stupid of me.

We got Josh and Lilli into strollers. I don't like to have Lilli use a stroller unless there is a lot of walking or waiting involved. We looked at the quickly growing line and decided it would be easier for her to sit in a stroller rather than wait in line and then walk through a crowded Bethlehem.

The first actor we encountered was a shepherd. He came over to us and asked us if we were waiting in line for the census. I said to Chloe, "Why are we here? Do you know?" Chloe thought about it and answered, "To see baby Jesus!"

"Don't tell the Roman guards that," warned the shepherd.

This is going to be so cool, I thought. And educational. 

Lilli had been quiet since we left the house. She did not make a sound during the drive, and she sat still in silence in her stroller. That was a little unusual for her because she usually makes sounds of either happiness or displeasure. She also usually tries to get out of her stroller if she is in it for a long period of time. We figured she was just tired. She had a nap before we left and had a hard time waking up. I was trying not to be concerned.

The next actors were the three kings, who came over to us while we inched forward in the long line. They told us they were looking for the baby, and they showed us their gold (spray painted bars on a platter surrounded with fake gems from a craft store), frankensense (a glittery box filled with what looked like salt, but he let Chloe and me smell it...I guess it was frankensensce), and myrrh (a decorative glass canister filled with a brown liquid which also smelled spicy...like myrrh I guess). I was wary of the smelly stuff because it bothers Lilli, but I hoped as long as she didn't stick her nose in the containers and smell it, maybe it was OK.

One of the kings looked at Lilli's stroller and muttered to the other kings, "That is one of the strangest chariots I have ever seen...no animal to draw it." At that comment, Lilli waved both of her arms and laughed. We loved how they stayed in character. I bent down next to the stroller and said, "You are going to love this, Lilli!"

The line moved up the sidewalk over to the wall where the tiki torches were burning. "Do you smell something?" I asked my mother in law. I thought maybe it smelled like incense, and I was getting worried. It looked like there was a lot of smoke coming over the top of the wall. I had not thought about fire and smells before we came, and it seemed like more than tiki torches. Within seconds of my saying that, we both looked at Lilli and I knew. She was going to have a seizure.

I took off running through the parking lot pushing her in the jogging stroller to the minivan. Trying not to panic, I left the stroller sitting there and got us in the back as fast as possible, slamming the door shut. The next few awful moments were filled with emotion, prayers, and waiting as I looked in her face and said her name over and over. I know exactly what to do during a seizure. But even after eight years of this, I still always have the crazy hope that I can stop the seizure by distracting her. It is really quite ridiculous to think that, but if you were in my shoes, you probably would do ridiculous things too.

The details clicked through my mind. We were a half hour from home. I did not know how to get to the nearest hospital. I had the Diastat with me (emergency medication to stop seizures) but no oxygen. I could yell out to one of the actors dressed in Bethlehem-costume sheets nearby if I needed help. There was no way I was driving anywhere right now with her like this, so I texted my mother in law to go on into the "city" with the other two, and I would call her if I needed her. I was torn between panicking all alone, and wanting my other two children to be sheltered and blissfully unaware of our plight while they enjoyed the experience of "Bethlehem." I was also flooded with guilt and remorse.

I called Jasen and tearfully asked him to pray.

At this point, some readers might be thinking, "what's the big deal if she has a seizure?" Someone actually asked me that once, not being rude. She just did not understand why it was so bad. I think some people might assume it is an inconvenience, but once it's over, life goes on. But it's not like that. Lilli's seizures do not always stop. Years ago we had to go to the ER time after time because they would go on and on. She has seized for over an hour. She has had trouble breathing. Her heart rate skyrockets. To us, a seizure is life threatening. She could stop breathing. She could die. It is always serious when Lilli has a seizure. This is why we live our lives in paranoia, picking activities and environments carefully, avoiding things that can trigger them. It is a constant struggle, to find a balance between living in fear of a possible seizure, and trying to enjoy life and activities outside our little "bubble." Honestly, I hate that part. It feels like a loss of freedom.

When I knew that it was over, and Lilli was going to be OK, I just sat there and cried. I looked out the window at the line of happy people, unaware of our little crisis a few feet away behind tinted windows in the dark, cold van. Tears rolled down my cheeks as I hugged Lilli and looked up at the flickering tiki torches. I thought of the wise men and their gifts, and the smoke on the other side of the wall. Guilt rolled over me like a tsunami, and sorrow for Lilli not being able to experience Bethlehem. I texted my mother in law that we were fine, that she should stay and let Chloe and Josh have fun and take lots of pictures for me. We waited in the van and Lilli watched Veggie Tales on a mini DVD player.

I pulled out her ipad and put the "yes no" page up. I said, "Lilli, are you OK now?" She pushed "Yes. Yes. No No. Yes."

I thought about it and said, "Yes because you are not having any more seizures, but no because you didn't get to go into Bethlehem." Just a guess. She leaned into me, squeezed me and nuzzled my cheek with her nose. I took that as yes, I guessed correctly.

I pulled her into my arms and said, "I don't know why that happened. It's not your fault. It's my fault. I didn't know there was going to be smoke here, I should not have brought you. I'm so sorry Lilli. I don't understand why you have seizures, but I know that God loves us. He loves you and he is here with us. He knows what we are going through, and he really loves you." Lilli leaned over and purposely touched "Yes" on the ipad one time. Then she squeezed me.

We sat there for a few minutes in silence, and then she took my hand and pulled it toward the ipad. She typed, "U sad."

"Yes, I am sad Lilli," I sighed. "Because I really wanted you to experience that. And I feel so bad that you have seizures. I'm really, really sorry." Then I thought to myself, be a strong momma. What would a strong momma say in a time like this to an eight year old?

I took a deep breath. "Lilli, let's imagine what you would have seen if we had gone inside," I began. "You would have seen the Roman guards at the gate, and they would have asked you if you knew about rumors of a baby being born as the Messiah...then you would have walked into the marketplace and seen people making things...maybe pottery, maybe things crafted from wood...you would have seen real animals like sheep and goats and donkeys, and even a real camel." Lilli hugged me and sat there, listening. "At the end, you would have seen Mary and Joseph, and a real little baby wrapped up in their arms."

I tried to think of other things we might have experienced if we had been able to go in, and held Lilli on my lap as I attempted to create a picture for her of what was happening behind those walls.

I watched the exit for where my mother in law and the two kids would come out. After awhile, they did, with smiles, bubbling over about what they had just seen. My two and a half year old Josh came running over to the van with excitement. "Mom! MOM! Com-ere! Com-ere!" He waved his little arm, beckoning to me and grabbed my hand. My mother in law encouraged me to just take a peek inside the exit and see, while she stayed with Lilli and Chloe. Josh darted under the piece of burlap hanging in the exit doorway and I chased him...to the quiet place where Mary and Joseph sat on bales of hay. We stopped in our tracks, because we had just stepped into another world. It felt serene. It was hushed and still. The noise from the rest of the "town" seemed muted and far away. We stood in the dimly lit stable area, as a real donkey stood quietly nearby. It was dirty. It was dark, and cold.  It felt real. It felt...holy. Mary was holding a sweet, happy quiet baby, snuggled in a blanket. A little chiminea burned nearby to keep them warm. We were the only ones there. An angel stood quietly up on a platform behind bales of hay, and she smiled down at Josh. Josh beamed. He pointed at the baby and whispered "Look! Look!"

"Who is that?" I said softy. "Is that baby Jesus?"

"Jesus." Josh whispered.

I pointed at the angel and whispered "Angel." Josh repeated it in a hushed voice. We stood there for a few seconds and I hugged him tight to me, filled with a mixture of emotions from the past hour. I wanted to stay longer. But I thought of Lilli.  "Say bye bye to baby Jesus, it's time to go," I whispered.

"Bye Jesus," Josh waved.

We stepped back out from under the burlap into our lives. The night went on with usual craziness. We drove home and realized our coats and hair smelled like smoke from the chiminea. This was not good for Lilli. When we came in, we stripped our coats off in the garage and smelled the kids' hair. Jasen took the three kids and put them right into the tub while my mother in law and I went off to take quick showers and wash away the smoky smell. Later before bedtime, Lilli got sick all over the carpet. We cleaned and scrubbed while Jasen put Lilli back into the bathtub for a second bath. We fell into bed physically and emotionally spent, watching Lilli for more seizures throughout the night while she slept in our bed.

This morning, I pondered the events and teared up as I spoke to Jasen about my guilt. Jasen reminded me that we do not live normal lives. We cannot do everything we want to do. We have to split up the family and do things separately. Next year if we go to "Bethlehem," one of us will have to stay home with Lilli.

Even so, we are blessed. We have a Christmas tree. We have gifts. We have a warm, smoke-free home with running water and plenty of food. We have family. We are so incredibly blessed, and we take so much for granted every day. We will have a good Christmas, celebrating the birth of our savior and thanking Him for giving us hope and life. I will fight the temptation to feel sorry for myself and focus instead on the many blessings we will enjoy over the next few days. And I will remind myself over and over:

We are blessed.

This Year's Early Christmas Present from Lilli

Last year, my early Christmas present was Lilli typing on the ipad by pulling my hand toward each of the letters on the keyboard. This year, my Christmas present is Lilli communicating through the ipad completely on her own. This is quickly becoming old news, because I have not posted enough on my blog lately. Each day that goes by before I finish this post, she does something new and I think about how I need to tell everyone (and record the progress for myself).

It is still in the beginning stages, but it is really, truly happening. Since October, we have moved into the next phase of Lilli's story: the phase where she begins to communicate independently - without us touching her arm or supporting her hand. The order went from using our homemade velcro alphabet letter cards to "Yes No" cards to "word cards" and "phrase cards" to now the newest version of her communication app. Looking back we can see how each step naturally led to the next one. And here we are.

In the very beginning, we held her hand. Now, I do not recommend that method for everyone, even though it was life changing for us. If I ever write a book one day about our journey, I will explain in detail why I do not think it is a good idea. We found out the hard way. There are great insights and dangerous pitfalls in using that method. In hindsight, we did need that boost, to know that she can read and understands so much more than she lets on. But then we had to take major steps back, to "start over" so to speak. I know it all happened for a reason. And the ipad in the sink, even though that was a bummer, was an important part of the process because it made us try new things. I think in Lilli's case, typing while supporting her hand helped us know what is going on in her mind much earlier than if we would have waited for her to type completely on her own. That day of independent typing has not come yet. But I know it is coming.

I could write another entire post on how we need to expect more from children with special needs, and give them the benefit of the doubt. Lilli is very smart. But if she did not ever have someone believe in her and teach her how to use an ipad to communicate, she would probably still be sitting in a class somewhere putting blocks in a cup over and over, and listening to Brown Bear Brown Bear. Seriously. Instead she is doing third grade level work, learning about math, science, geography, history,  and reading books that third graders enjoy.

So this app, "Proloquo2Go," and the ipad have been life-changing for us. Lilli is using the app without us touching her arm, to tell us things. She is not typing words, because that is very tedious for her and the keyboard is too small. Instead she is navigating through the communication app to put words and phrases together, all by herself. She is tentative and inconsistent. But let me tell you, it is thrilling. Because it is Lilli. Our real Lilli, talking to us on her own without being touched.

The "velcro words and phrases" phase happened in October. I laugh thinking about it because we only did it for a few weeks. All that printing, cutting, laminating, and velcro. However, it did lay the final part of the foundation in transitioning her to this current phase. This is how it happened. One morning during school time,  Lilli was upset. Her teacher Leslie tried to figure out what was wrong. Lilli would not type what was bothering her, and she fussed all throughout her school session.

A few days later, we came up with the idea to put short velcro phrases on a poster board instead of in a book. This was so that she could go over to it and quickly find a short phrase on the board she might want to tell us, such as "I feel sick" or "I'm thirsty." I also included phrases like "I like this," and "I don't understand." We propped the board up in her school room, and waited to see if she would use it on her own. All we did was point to it and explain verbally to her that she could use it if she wanted to tell us something, instead of typing it out one letter at time.

It worked.

Later that week during school, Lilli was fussy and whining. She got up on her own, walked over to the board, tore off the phrase "I'm frustrated," walked over to Leslie and thrust out her arm dramatically to hand it to her.

Leslie said, "You're frustrated, Lilli? Can you type to me why?" Lilli typed with Leslie's help, "Want to play in playroom but no because school."

Leslie said, "Lilli, I'm proud of you for telling me why you are frustrated. I am going to let you have a little free time right now because you did such a great job telling me what you are thinking. Then we will go back to school work."

Lilli chose the velcro phrase "I'm frustrated" and pulled it off this board.

Leslie said that Lilli happily played with some toys for a few minutes of "free time," and then willingly worked for the rest of the session with a completely new, happy attitude.

What a wonderful thing it is, to be able to express your feelings in "words."

Lilli used the velcro words for other situations. We took them shopping in a small container and Morgan spread them out on the ground at Michael's. (Not a positive experience. Shopping usually is tough.) We took them on other outings and we used them around the house. I used them to ask Lilli what she wanted to eat for every meal. Morgan used them to ask her about activity choices. The whole "word card choice" thing was going great. And then...we got the communication app Proloquo2Go re-installed on the ipad. That was November 1. (We had gotten the new ipad replacement from the school in October but we did not get the communication app right away).

I believe that as soon as we began the transition from velcro word cards to word "buttons" on the ipad, it clicked for Lilli. Proloquo might be a program that clicks more easily for some people, but Lilli had trouble with it when we used it last year. We also made a lot of changes to simplify it so that Lilli could navigate it herself. She is slowly picking it up and learning how it all works.

One day, I was talking in the kitchen to my mother in law about a piece of fleece scrap I had leftover from a blanket I made last year. She suggested I use it to make a scarf for one of the kids. As I held it up and talked about making two scarves out of it, Lilli came running into the kitchen. (Years ago I might have thought it was coincidence, or that she wanted a snack or something. Now, I know that Lilli has excellent hearing and she comes into the room when we are talking about something she wants to be a part of. It's true.) See, I have three children, and I was saying I could make two scarves for the kids. I totally get why she came running into the room! Just because kids cannot talk, that does not mean they cannot hear!

I showed it to Lilli and asked her what she thought of the blue fabric with dogs. Morgan put the ipad down on the kitchen table in front of her. Lilli hovered her finger over the ipad and touched:

The "I have something to say" button - opens a new page with choices of phrases.

The Negative folder opens to give choices of negative words and phrases.  The screens "scroll down" to show many choices below.

Lilli pushed "I don't like it"

Then she pushed "no" for added emphasis, I guess.

We were stunned. And proud. As you can see, you have to push several buttons to get to the desired phrase. This was not an accident. Witnessed by Morgan, my mother in law, and myself, Lilli had told me completely by herself that she did not like the fabric for a scarf for her.

The other night, she was tired and whiny. I put the ipad in front of her and simply said, "What do you want to tell me?" She pushed three buttons in a row to say:

"I want ...to go....to bed."

So I put her to bed, thinking how incredible it is to have another window into my little girl's mind.

Each day brings a new surprise.
Last week: "I want to wear a green shirt."
Yesterday: "Hi. How are you?"
This morning after I told her something good: "I am happy."
At lunchtime: "I am hungry for lunch. I would like a turkey sandwich."

This is only the beginning of yet another exciting part of Lilli's story. With the help of Leslie, Morgan, and Lisa (her teacher and therapists) the app is being continually programmed and improved each day, as we add things to it that Lilli might like to talk about. We are loving this app. I think Lilli loves it most of all.

After all, it is her voice.

Fear of Restaurants and Being Spontaneous

Not long ago, we got a last minute invite from acquaintances to go out to dinner.

With all of our kids.

To an actual restaurant. Again let me say, with our kids. And not to McDonald's, either. To a Thai restaurant.

I told myself, hey, lots of people do it all the time. I've heard about it. I've seen it before. It is entirely possible for people take a bunch of kids out to eat and actually leave the building unscathed, with full bellies. We...just don't attempt to do that.

Our world became a lot smaller when Lilli was born.  Dates, vacations, road trips, eating out, shopping, all of those public activities became extremely hard. I became paranoid and began to avoid unnecessary, difficult outings. So we just got used to staying home a lot. We don't go out to eat, we stay home and cook. We tell ourselves that "our cooking is better than most restaurants anyway" and "eating out is expensive." Those reasons are valid (depending on the restaurant.)

But the biggest reason is because it is just too hard for it to be worth it.

So this invitation...it was complicated. Jasen told me about the casual invite which had actually taken place on his voice mail. We had a short window of time to decide and call back. The person who asked really does not know us, and obviously does not know that we just do not "go out to dinner." Oh, and it was to a restaurant that we had never been to before. For an early dinner at 5:30. I was intimidated by the potential disaster I envisioned. (I can be a bit dramatic at times.) But without explaining why in detail, I will just say that it was one of those situations where we knew we had to go. Trust me, it was important.

Maybe one day, when we know these people a little better, we will look back and laugh at our preparations and paranoia. But the next few hours before dinner were devoted to avoiding a meltdown at the restaurant. We made food for the kids. We fed Lilli her dinner way early at 4:00, and gave the other two a huge snack. We grabbed Josh's lunchbox full of hotwheel cars and some crayons and markers for Chloe. But Lilli, well, I was not sure about her. I looked at the ipad and decided it was time. I needed to break down and actually BUY a movie for her from itunes. I guessed that there was not going to be free wi-fi for her to watch Elmo on Youtube at the restaurant (our best distracting activity), and I later found out I was right. I figured it couldn't be that hard to figure out how to put a movie on an ipad, I had been talking about doing it for months. I am so behind the times about some things. So I found one of her favorite Sesame Street movies, The End of Silliness. It was totally worth the $6.99. Of course, I didn't know it would take that long to download, with our slow internet connection. I watched the "downloading" line, paced, and packed drinks and diaper bags. It finished just in time.

While we drove to the restaurant, we made plans and instructed Chloe to use her manners. As we pulled in, Chloe informed us that she had to go to the potty again. I took Chloe and Lilli inside to the restroom together. That took about fifteen minutes. Then, we were READY.

At the table there were four of us adults, and seven children. The kids did awesome. Josh did not throw any silverware or yell loudly, "MA! MA!"" He sat in a highchair and played with his cars quietly the entire time. That was a small miracle. Chloe colored quietly with the children of the other family. Lilli sat next to me and watched her new movie on the ipad which was discreetly laying on my lap under the table. I didn't want it to be a distraction to the other kids, or to other people in the restaurant, so I put the sound on mute. Lilli did great sitting in a real chair, and only tried to get up a few times. I kept my arm around her and hugged her tight next to me with my left arm, all while I tried to eat my dinner with my right, balance the ipad on my lap, and maintain a coherent conversation with a person I hardly know. Jasen entertained Josh and held another conversation at the other end of the long table in the middle of the restaurant. I was nervous, but it went better than I could have imagined.

The best part of the dinner was when one of the people we were dining with commented, "So.. your kids are doing great! Are they always like this when you go out to eat?"

Jasen and I glanced at each other. I said, "Um, we don't...really, go...out to eat at restaurants."
They both looked from me to Jasen, who smiled sheepishly and shook his head, "No, we don't."

I feel like we are re-learning how to live life sometimes. We are learning how to do "normal" things in a different way. We cut back drastically on all of our activities years ago, because of Lilli's seizures, her behavior, her feeding issues, and finances (which were affected by having a child with special needs).

Now, we are at a point where we can try to go out spontaneously as a family once in awhile. And if we try it, we find sometimes that it actually does turn out OK. I don't know when we will attempt to go out to eat with the kids again. Probably not until someone else talks us into it.

And then I will download another itunes Sesame Street movie, take a deep breath, and we will try it all over again.

A Simple Yes or No

I needed a clear way to know what Lilli wanted or needed, without the ipad. Just a simple “Yes” or “No.”

Shopping trips have always been difficult, even typing with an ipad. This is one of the best, solid communication methods I have ever found with Lilli. Why did it take so many years for me to think this up?

Here it is, nothing fancy:  The Yes No Velcro cards  - in a purple purse.  

Lilli’s Little Purple Plastic Purse. We love that book.

The purse part is important. Lilli is eight, and fashion is important to an eight year old. It makes her feel like a big girl, and encourages more independence. Plus, it’s cute. (And it was only a dollar at a yard sale.)

She can’t carry the purse herself yet, but maybe one day she will. We could get a bigger strap and put it on her shoulder. For now we just carry it for her and leave it in her sight. When we want to ask Lilli a question, we pull the cards out for her. 

The Problem with Other Yes and No Methods:

Pointing - We tried having her point at the words Yes and No. But lots of people with autism have trouble with pointing. Lilli has worked on pointing at things she touches for years. It is still hard for her. She never, ever points at something in the air or someone across the room. Touch is important. It works in specific situations: if I hold out two objects and say “which one do you want?” she can touch or grab the object. But she rarely point-touches, it is usually more of a whole hand tap or grab. And it does not work for everything.  Pointing is not always accurate either. She can aim to point at something and go off to the side. Or in the middle between two pictures, for example.  All of this is confusing to me about Lilli, because she can do some things like Starfall.com on a touchscreen. But she needs guidance with typing. I do not know why there is a discrepancy, I just know that she finds it easier to reach out and grab something as opposed to touching it with her pointer finger.

Vision can also be a problem. We are still unsure of Lilli’s exact vision issues. She uses peripheral vision often. Side glances are more prominent than direct eye contact. If we put two pictures next to each other but space them far apart for easier aim in pointing/touching, we can’t tell if both cards are within her field of vision.

Signing  - We have been working on signing “yes” and “no” for years, but it is not consistent. Most importantly, Lilli has trouble signing with people she does not know, and signing in situations where there is pressure or she is overstimulated. For example, at the mall with music playing and lots of people around.

Nodding - Lilli cannot nod her head yes or shake her head no, to answer a question. She is physically able to move her head, but not on command. It’s an autism thing.

These are all methods that we take for granted every day. How many ways can you express “Yes” or “No” to others? We have many choices, but Lilli has very few. Lilli had done well with Velcro pictures in the past, and now we know that she can read. So the YES NO Velcro cards were born. Simple, clear, and concise. I ask her the question, and hold out the cards. She pulls off the “Yes” or the “No,” and hands it to me. I LOVE Velcro. (so does Lilli.)

This simple method has been very helpful and accurate. And it WORKS for us. I hope this idea will help someone else who has a similar issue.

These are our rules:

1. Always put YES on the left. At one point, we were switching the cards around each time, to make sure she was looking at them before she answered. Sometimes YES would be on the left, and sometimes it would be on the right. This came from the idea that we needed to “test” Lilli and make SURE she was paying attention to the cards. Then I realized, this is not fair. When you ask someone a question with a yes or no answer, do you say, “Do you want a slice of pie? No or yes?” Most people would say, “Yes or no?” Yes always comes first. Another reason: we all do things with muscle memory. When we type, we don’t look at the keyboard all the time (if we know how to type, that is.) Our fingers just know where to go. The letters are not “switched on us.” When we drive, (if we are experienced drivers) we don’t look down at our hands and concentrate on every move they make. Some people can text without looking. I cannot do this, but I have an old flip phone and I am old fashioned. (Or just old.) So when Lilli does things, she sometimes uses muscle memory too. She reaches for the one on the left, or the one on the right. So they always have to be the same. Make sense?

2. Do not use the YES NO cards to test Lilli with silly, test-like questions that insult her intelligence. She is smart! If we ask her something stupid like, “Are you a girl?” trying to see if she understands, she will get mad and either not answer, or take both cards off and throw them on the floor. We only use the YES NO cards to ask her conversational, everyday questions that we do NOT know the answer to. Otherwise, we would not ask her, silly! So for example, I ask her “Do you want mustard on your sandwich?” “Do you have to use the bathroom?”  This helps me to know what she wants, and it helps me to include her. I enjoy being able to ask her something like, “Do you like this song?” Or, “Do you like this bracelet?” These little questions help connect one person to another.

3. Use the cards all the time, about everything. Lilli wants to have a “say” in the choices in her life. We took the purse with her to church, and the volunteers taught her a Sunday school lesson and asked her questions. We took the purse to occupational therapy, and the therapist used the cards to ask her if she wanted to go on the swing during therapy.  I use the cards to ask her about food choices, play choices, bathroom, fashion, books we are reading, and her opinions on things. Lilli has shown us over and over that she completely understands, and she has her own opinions and preferences.  We are beginning to use the cards when shopping, and it has proven to be the clearest, easiest way to know what she wants and does not want. Is it 100% accurate? I guess I have no way of proving it. But today when I asked Lilli if she wanted tomatoes on her sandwich, she told me yes. So she got tomatoes.  Almost every time I have asked her if she had to go to the bathroom and she used the cards to say “Yes,” I have taken her and she DID go. Answering yes or no often has direct immediate consequences. I think it is a super skill to work on with a child who has no “voice.” So even if it is not 100% all the time, it is easy, fast, and better than anything else we’ve got going on here.

We also put the potty button into the purple purse. The portable potty button is concealed in a zipper change purse. I sewed a ribbon onto it so she can wear it, but since we got the purple purse she does not wear the potty button. We put the purple purse where she can see it, and she has gone over to it and pushed on the purse with the potty button inside. In case you missed my post about the potty button, it is a rigged recordable picture frame that says "I have to go potty" when pushed. 

So now we have a purse for a non-verbal, fashionable girl with the ability to communicate “Yes,” “No,” and “potty.”

My niece sent the change purse that I used for the potty button camouflage. I used a ribbon I already had and sewed on a strap. The card for the back of the YES NO cards is cut out of a piece of a plastic school folder that I picked up at Office Max.  I printed out the words “Yes” and “No” at home and had them laminated, but they can be mounted on cereal box cardboard and covered with clear packing tape – we do that a lot to avoid a trip to the office store. So it was very inexpensive.

So simple, cheap, yet so valuable. If you know someone who is non-verbal, will you please share this idea? I can’t keep this to myself. I know there are other non-verbal children or even adults out there who might be able to use this simple method.

So what do you think? Do you like this idea? Yes…or No?

 

What to Do Without an Ipad….

Alas, the ipad did not make it. All seemed well after a week in the rice, but when I charged it, it went completely dead.

Water still left inside? Rice dust? Charged it too soon? Who knows. I will not Google anymore about it. I have passed it back in its coffin, ahem, original box, to the school. They are going to have someone look at it. May I brag on my child's incredibly forgiving principal for a moment? When the unfortunate "sink incident" first happened, I was filled with dread. It was our fault, it was the school's ipad. As I punched in the school's telephone number, I figured the only thing to do was to be honest and apologize, and offer to pay for it. When I broke the news to the principal about the wet ipad, she handled it with grace. She is taking care of it. No anger, no guilt, no we never should have given your child an ipad, you irresponsible parent. Just grace. I took the sick ipad to the school and dropped it off.

Now, we wait.

We have been without the ipad now for five long weeks.

When things like this happen, it forces us to try something else. I am actually glad that this happened. Kind of. We all need to have alternatives in life, in case something happens to our "Plan A." How dependant we all are on technology. The power went out here the other day for two hours. Just two hours. And at first, my kids went nuts. What? No movies? No computer? No…air conditioning? Chloe kept flicking light switches up and down in awe. "Mom! They don't work! Mom! My fan doesn't work! Hey! The light in the bathroom won't come on!"

Yes. I know. Isn't it neat? Hey, the vacuum and the washing machine won't work either! And hey! The fridge and freezer are off too!

We are blessed to rarely lose power here. And let's all put it into perspective, we are blessed to even HAVE power, ever. We are blessed beyond belief in many ways. The fact that I write a blog focused on a wet ipad does not mean I am not incredibly thankful each day to live in a country where children with special needs have so many opportunities.

My kids quickly got over it. Amazing - they were actually able to play without any electricity! Lilli had her teacher come during the time without power. Leslie said it was one of the best days they've ever had. They worked on flash cards with time, money, spelling words with the velcro letter board, and read a chapter book. I have to confess that Leslie had her phone and let Lilli have a few Youtube clips as a reward. BUT still, they had a great lesson mostly without technology.

Surviving without something you depend on can be a challenge. But it stretches us and grows us. Surviving without a way to communicate is tough. For example, last week I had laryngitis. But I could whisper. I could point at a pile of toys on the floor and exaggerate my facial expressions. I could use gestures and clap. Do you think my children knew what I meant? I could also point at the time-out chair and turn on the timer without speaking. That can be effective communication, with or without laryngitis.

Losing my voice to layrngitis is temporary. When I lose my voice, I have alternatives. But when Lilli first lost her "voice" – the ipad – a few weeks ago, we were kind of stumped about alternatives for her. In the beginning it was really quite frustrating. We had been able to communicate with Lilli for several months, and then we had to go cold turkey. I explained in my last post that the Dynovox was not really much help. We tried using the laptop for typing but it is not portable. (I know, a laptop IS portable but mine isn't. It's old and needs a new battery so we keep it plugged in.)

Then slowly, we began to get creative. We already had some things in place before. We just learned to depend on them more. We pulled some old things out, and realized that sometimes the "old standby" is incredibly valuable.

These are the ways we have been communicating with Lilli without an ipad. I want to share them because not every parent can afford an ipad for their child with special needs, or I should say most cannot. Most are not as blessed as we are to have a public school that will provide an ipad to a child who desperately needs a way to communicate and learn. Even a child that might put one in the sink and turn on the faucet. Here are some cheap ideas some readers may want to use or share:

A picture of a keyboard.  Our speech therapist thought maybe Lilli could practice typing on a flat printout of a keyboard. It was harder than I thought it would be to find a good one to print out. I was looking for a clipart of a keyboard when I found this: http://www.spectronicsinoz.com/blog/tools-and-resources/free-downloadable-alphabet-boards-for-people-using-aac/
This is a quote from their blog: " .... They can be a great backup for someone when their communication device isn't available – those times when it hasn't been charged or if you are going for a swim and don't want to take technology near the pool!"

Or...if it is say, broken. Well, thank heavens! Someone already has been through this before! This is what it looks like:

I copied and pasted it, and enlarged it. We slid it into a clear covered binder, and Lilli has been "typing" on it! Notice the "buttons" on the side. We like the simple "YES" and "NO" that you can just touch quickly.
We also unplugged the keyboard to the LeapFrog Click Start, and Lilli has typed on that.

keyboard that only works when hooked up to a tv - but we unplugged it and had Lilli type on it.

A third option is an old overlay from a communication device that our speech therapist gave us. Just a flat, laminated printout of a keyboard. She was just going to throw it away because the communication device is not used anymore.

The overlay from an old communication device

In all three cases, there is no voice output. But it is great typing practice! We say the letters or words out loud as she types. We are the low tech voice output. It works. She even uses the space bar. We can roll up and take the overlay with us anywhere. Morgan suggested that we can laminate the keyboard printout and take it to the pool with us this summer. We are using this opportunity to find other ways to "type" and communicate.

PECs pictures. Lilli was thrilled to see them again. We took out old ones, and made some new ones.They may not communicate complete or complicated thoughts like typing can, but they get the basic message across. Now that Lilli can read, we are happy to bring out new PECS pictures she did not understand or use before.

PECs pictures are great except when they are missing. Where are the ones that used to be on this page? Probably under the couch. 

And now I will share our most successful cheap, homemade communication device at the moment:

"The Potty Button." I promised myself I would not blog about potty training. I just don't think that Lilli would want me to tell everyone about that long road. But aside from the actual training itself, a very challenging problem for many parents of non verbal kids is: how does a non-verbal child tell you that they have to go to the bathroom? I think it will be OK to share this part with the world.

The Potty Button Necklace. Should I start taking orders?

The Potty Button next to the bathroom door. Also a velcro PECS picture, just in case. We need backup.

There are pictures, as in Lilli could rip a Velcro picture off of a potty or a clip art of a person sitting on the potty, and hand it to me. One is velcroed onto our bathroom door, as pictured above. Sometimes Lilli grabs that and brings it to us. But we have found that to be less than ideal. We need a voice. A noisy signal above the din of our busy household. A way for her to "yell" that she has to GO - NOW, when I have my hands in the kitchen sink or my thoughts focused elsewhere. I hear that potty button and I drop everything and run around the corner to help her. In fact, she pushed it while I was writing this paragraph. 

This is the potty button: a recordable picture frame, rigged with a piece of glue gun glue and poster putty to hit the button. In one of them I used some random plastic thingy I found in a drawer instead of the glue gun glue.. I think it is a rubber foot pad for a trivet or something. We have four buttons. One on the doorframe of the bathroom. One at the kitchen table. One at the table where she does therapy. One on a ribbon which the "portable potty button." I did not come up with this idea on my own, some speech therapist made it up and posted it online years ago. It is a cheap, homemade version of the "Big Mac Button." The story of the potty button is too long for this post, but I wanted to share the idea with other moms and teachers. They all have my voice recorded on them, saying "I have to go potty!" When Lilli pushes it, I can hear it from around the corner. She does not have to come and find me and hand me a picture. We get a lot of laughs out of the potty button. Morgan wears it for Lilli when we go on outings...and we joke about what people think of her wearing essentially a "necklace" with a picture frame taped on it with a picture of our toilet, out in public. She has a great sense of humor about it and says maybe people at Target will look at Morgan wearing it and think she is setting some sort of new fashion trend. You have to laugh about stuff like this.

In the past we used these buttons to express other simple messages such as "I want to eat" and "I'm thirsty" We tape pictures on the front and record whatever short message is needed, then tape the frame closed with the glue inside so it will press the button when you hit the outside of the frame.

So, ipad, we miss you for sure. But we are keeping busy without you… wearing potty necklaces and typing on flat pieces of paper…until you return.