Learning to Use a Voice

It is something we all have to do at some point in life. Literally, and figuratively. Actually, it might be more accurate to say that we have to do this at many different times throughout our lives. We have to learn that God gave us a voice, and we should use it. How we use it is the big question.

I was reminded last week about my own - figurative - voice. Here I spend all this time talking about Lilli's voice, and how she can't verbally talk but she has a "voice," and how we are trying to help her use it. I am  passionate about explaining to others, in writing and in person, how Lilli has an opinion and wants to be heard even though she is not verbal. I want teachers and therapists everywhere to look at non verbal children in this way. Lilli definitely has a strong "voice."

I honestly have not given much thought to my own voice.

I guess I felt a little like I was yelling down a dark tunnel, thinking it was empty. Or maybe just full of spam. (Other bloggers will get that.) But I continue to yell because I need to get it all out. I did not know just how many people were listening on the other end. Maybe I will never know about all of them. But it does not matter. There are people listening.

It was so good to be reminded. I had a very humbling, precious moment where I felt a little like George Bailey in "It's a Wonderful Life," only...it wasn't Christmas, and it had nothing to do with money, and I wasn't really questioning my existence...okay I guess it's not the greatest illustration. I thought of the movie because I think the best part is at the end, when George realizes that he has touched many other people's lives and never even knew it.  There is just nothing to say in a moment like that. You just take it all in and wonder at it all, how God brings people together through hundreds of seemingly random, different circumstances. But nothing is random. And I do not believe in coincidences. If only we all took more time each day to tell other people how they have made a difference in our lives. Even if it is small. How encouraged we would all be.

I have been writing this blog for a few years now, and I feel very blessed to hear from people I had no idea were reading this. I loved every comment on this blog and on Facebook. I received two phone calls from long-distance friends I had not spoken to in years. They called to tell me that they have been reading all along. I just did not know, that's all. I was very surprised, and more encouraged than I have felt in a long time. So thank you, to everyone who took the time to comment or call. It was a gift to me.

I have been thinking about my voice in our community and specifically in our church. Most times, I feel very small and insignificant, and mostly just plain old tired. I often wish that other people would advocate for families with children who have special needs. Meaning, people who don't have children with special needs, people who get a full night's sleep and lead more of a "normal" life. (There's my least favorite word again.) But it seems to be true that when a person feels passionate about something, that person is the one who can make the most difference. Our pastor says that when God puts something on your heart, He means for YOU to go and do it - not to go and tell someone else that "they ought to do something about it." Don't call the church and say that "they ought to take care of that situation." If it is on your heart, it is there for a reason, because you are that person who is supposed to do something about it.

See, I just sighed out loud to myself in this early morning dark kitchen.

Because I know that I have to go and do something. I have to go and do something that will be hard, but I can't not do it. I'll bet you squirmed a little or maybe sighed to yourself too when you read that. If you did, it's because you probably have something that bothers you too, and you wish somebody would just DO something about it. But you know that person is probably going to end up being you. Sorry to tell you that.


I will write about what I have to do another day. Today I want to end with this video clip of Lilli, who is learning to use her "out loud" voice. I believe that after you watch it, you will feel blessed in some way. This girl wants so desperately to speak, and it is incredibly difficult for her. Would you please watch this video, and say a prayer for Lilli, as she is trying so hard to practice and make these sounds and words come out? Here is the Youtube link in case it does not show up on your browser: http://www.youtube.com/watch?v=DFyeWo5SyhA

Thank you for reading. I will keep writing. I will keep telling my stories. I will tell stories about others as well. I hope it continues to encourage, enlighten, and bless everyone.

Morgan is trying to get Lilli to make the sounds "guh" for the letter G, say the word "me" and the sound "ticka ticka" for the word "tickle." Lilli says these sounds on her own so this is why we chose them, but she has trouble making the sounds come out "on command." This is due to speech apraxia. She is physically able to do it but has to work hard and really concentrate to do when when Morgan asks her. She is also a little distracted by me and camera shy. (Josh is climbing up the climbing wall making noise next to me while I'm trying to record.) She makes all the sounds Morgan asks, but softly, so you might need to turn up your volume. 

Telling Someone Else's Story...and Why I Must Tell It

I sat and listened to a woman I'd never met before, as she told me about her two young children. They are undiagnosed, ages two and three. She is on a year-long waiting list to get them in to a developmental pediatrician so they can get a diagnosis. A year! She cannot get more intense or specific services for her children until she gets that official diagnosis. They have early intervention services, with speech, occupational, and physical therapies. But she waits on a long list to get more help. If they do get a diagnosis of autism eventually, they will be put on another waiting list, which is two years long, to get behavioral therapy - ABA therapy for her children.

Despite the OT, PT, and speech therapies (which are one hour each per week) she struggles alone.  She has thousands of unanswered questions. She asks me, "What are the symptoms of autism? How do I know if my children have autism?" She does not even know where to begin. She has no idea what to do about the future. She lives a difficult life, waiting for answers. When you don't have a diagnosis, you don't have direction. When you finally hear the doctor say, your child has "this," at least you know what to focus on as far as therapies and programs. Well, to some extent, anyway.

In the meantime, while she is waiting, this mom's life is on hold. She cannot take them to the grocery store. She cannot take them to restaurants. She cannot get a babysitter. They have stopped attending church because of her children. She cannot take her eyes off of them for one second. She has a job, but she says her kids are in danger of being "kicked out of daycare" because of their behavior. One child is nonverbal and eats all kinds of objects, such as metal screws, crayons, and recently her own feces. The other child is extremely aggressive, has anxiety and volcanic melt-downs in any public place where there are crowds or groups of people, and bites others. The mother struggles to figure out what the non-verbal child wants - as simple as what she wants to drink. The little girl cries and cannot communicate her basic needs. They have feeding issues such as choking often on certain textures. They do not sleep through the night, ever. And...her pediatrician tells her nothing is wrong. Want to know the craziest part? We go to the same pediatrician. Yep. I shook my head and told her that she can't completely depend on the pediatrician for help with this, unfortunately. The pediatrician can make referrals, but the mother will have to ask for them. This mother will have to learn how to advocate and find help for her children by herself.

Can you imagine her life for one moment? Can you imagine trying to keep a marriage from falling apart and a career afloat while dealing with these issues every second? I hear stories like this and I think, why is this mother being made to wait like this? Why is there such a problem with getting in to see a developmental pediatrician? Why is she not getting more intensive therapies? Why on earth is the speech therapist not helping to establish a simple communication system for this frustrated little girl?

I think, What can I do? How can I help this woman? I hadn't even known her for ten minutes and I wanted to help her. You probably feel sympathetic and helpless just reading about her, and you have no idea who she is. I gave her some advice about advocating for her children and researching certain therapies. I showed her some of Lilli's old PECS pictures and explained how she could make some simple pictures to help her little girl tell her what she wants to eat or drink. I recommended the best book I've ever read about helping with her children's issues. I told her about how our church has a class for children with special needs with wonderful volunteers, and she could feel comfortable bringing them there. I will be in touch with this mom and try to think of ways to help her. But I can't do anything about the programs that don't exist, and the therapists that are not helping to establish a communication system, and the therapies that have two-year waiting lists, and the lack of doctors who can see her child and give a diagnosis in less than a year's time.

The whole time we were talking, she kept saying, "Oh, you just don't even know..." as she wiped tears away. But...I do know. Some of it. I don't know what it's like to be her and live her life, but I have shared some of the same experiences, frustration, and feelings of helplessness. She is probably so used to meeting other parents with "typically developing" children (sometimes I do get a little tired of that term because it reminds me that we are NOT typical) and she feels like she lives on a completely different planet when she hears them talk about their struggles. Hearing a mom complain about playdough stuck in the carpet and fighting with a sibling....compared to a mom in agony over her child that's non verbal and eats her own poop?  I personally think there is a difference there, but that's just me. Moms like to connect with other moms about their child-raising experiences and struggles. But when you don't know any other moms who have a non-verbal kid that eats feces, well, that can make you feel pretty alone in the world.

I wrestle with this blog, more than you can imagine. I consider taking my blog down every week. Sometimes daily. I question why I even do this. Am I wasting my time? I could be doing my dirty dishes right now, or a hundred other things. I wonder if people think I am egotistical, writing about my kids and thinking that others care. I do know some that some are irritated or just plain don't care. There are many people that are very close to us that do not read this blog. For the ones that do, thank you. I believe it helps you understand Lilli much better, and I can tell a difference in how people treat her or talk to her. For that alone, it is worth the uncomfortable feeling of baring my soul to the world. For the most part, unless people comment, I do not know what people think about the point of this blog. I write, I delete. I post, and consider deleting other posts I've already put up. It is an internal battle. I feel guilty for writing publicly about my children and my situation, because I know that writing something online is permanent. I cannot take it back. I don't want to embarrass my children or anyone else. I don't want to seem like I'm lecturing the world. I wonder sometimes, what is the purpose of my writing?

Really, it comes down to this: I write because there is no other way for people to know what goes on behind closed doors with a child who has special needs. If you don't know any personally, you might see them in public, rarely. You might feel sorry for them for a brief second. You might look away so they don't see you staring. But they have a story. And I believe those stories need to be told. It is my way of advocating for my own child, and for families like ours.

Why? Because they need help. Because they don't want to be judged. Because they never asked to live this kind of life, and they are trying to figure it all out. Because the next time you see a mother struggling with two young screaming children in the grocery store, it might be this woman.  The woman who is drowning in chaos and desperately needing help with her undiagnosed children, and she just needs to get a gallon of milk and some eggs without causing a huge commotion, but she can't. And lack of discipline or what you perceive to be "bad parenting" has nothing to do with her situation.

Because you might notice that a certain family that you know does not go to church, or to functions like the PTA school carnival, or to the movies, or to birthday parties, or to the neighborhood block party. But it might be for reasons you cannot imagine.

Because you might read this, wherever you live, and it might inspire you to think of a way that you could reach out to a family like this and help them.

Because the next time you go to the movies, shop at the mall, attend church or some other community gathering/event, I want you to look around and ask yourself, "Where are all the kids with special needs?"

If you don't see any, it's not because they don't exist. Trust me. If you don't see any, it's because the place or function you are attending has no accommodations for children with special needs. The same goes for adults with special needs. This is on a large scale for big things, and on a small scale too. The next time you are in a grocery store, look around for all the moms pushing their kids with special needs in special needs grocery carts. Don't see any? It's not because they don't need groceries. (Here is a link to a video about a special needs grocery shopping cart that I wish our grocery store had when Lilli was younger and could not walk as well. Wow, would that have changed my life back then: http://www.youtube.com/watch?v=7HTt9fx5WPE

Think about your workplace. Would a parent be able to wheel their child in a wheelchair into your store? Yes, I know there are laws about handicapped accessibility. That doesn't mean that every place is handicap accessible, not by a long shot. Once many years ago in the state where Lilli was born, I pointed this out to the pediatrician's office staff. I could not get Lilli into the building without a struggle. They had two sets of double glass doors, I'm not sure of the correct term - with one of those little vestibules to keep the cold air out. No handicap automatic button. Pushing a stroller with a baby (Chloe) and carrying a handicapped toddler (Lilli), it was incredibly difficult to pull open those two sets of doors to get into a doctor's office.  I suggested an automatic handicapped button. They thought it was a good idea; it had not occurred to them. A person with a wheelchair, a walker, or a child or two with special needs would have a terrible time opening those doors to get in. I wonder if they ever did anything about that.

Ever go to the movies with your child and think, where are all the kids with autism? They can't go to the movies unless your local movie theater has a special showing for kids with autism (and there are theaters that do this!)

Look around at church. Is there a way for parents who have children with special needs to attend your church? If you did not know I was coming, and I came to visit your church, would I be able to bring Lilli? We had a very hard time visiting churches when we first moved here, because most do not have a place for a child like Lilli. It was a lonely, frustrating experience until we found our current church home. Again I feel like I am getting into other topics that I could write entire separate posts about. So I will stop here, and leave you with this.

I write, because it is one small thing I feel that I can do to raise awareness and advocate for my child, and others like her. If my stories help you to have understanding for families who have children with special needs, I am glad.

I really hope it does make a difference. Please tell me if it does. It might keep me from deleting my next post.

Velcro Words

This is the latest idea. We have lots of ideas around here, and sometimes we actually find one that works. It's easy to have new ideas when I have a team of people who work with Lilli to try them out. If I were on my own, I would not get a fraction of this done.

Lilli learned to use PECS a few years ago (Picture Exchange Communication System). It was going great for awhile, but, it is hard to describe when and where we kind of hit a wall with the pictures. It is not an easy way to communicate with a child. You only get one basic idea at a time. For example, a picture of someone opening their mouth for a bite: that means "eat." Ok, it is a place to start. But it still leaves a lot of questions. It works, and if it's all you've got, then you depend on it. All I am saying is that while it is helpful and better than nothing, it is limiting.

 Lilli can hand me a picture that simply means "movie." I still have to figure out more information. Which one? Where do you want to watch it? Do you need anything else?

Chloe can come to me and tell me verbally in seconds that she wants: to watch Cinderella, in the living room and she wants a snack and a blanket, and oh, she wants me to sit next to her. And turn it up please. And please fast forward through the previews.

Big difference.

There has to be a "bridge" between handing simple pictures to someone, and independently typing words and sentences. So this might be a "bridge":

Velcro words.

                                                                     
It's like a combination of the idea of a "Word Wall" and a sentence building activity kit, but put in a communication book with velcro attached to it. (I think there was some old teacher lingo in there, sorry.)

Lilli can read. She does not need the pictures. They take up space, and I think they might even be distracting sometimes. Sometimes the cartoons are unclear and do not accurately depict the word or phrase.

Lilli can spell, and we are working on typing, but this is a shortcut. This is for what her speech therapist (love her) calls "functional communication."

We practice typing each day, but when she wants something it can be very frustrating to try and slowly type word after word with one finger. I try to imagine if I were an eight year old and I had to spell out three or four sentences to someone, when all I wanted was a simple snack and a certain movie. It might make me avoid asking. Or it would make me whine or cry about the time and effort it takes. Also imagine if you had to slowly spell out the words "I have to go to the bathroom" when you really gotta go. One last issue I have personally is that the pictures are not that great. How can you tell the difference between a picture of an egg salad sandwich and a chicken salad sandwich? On a two inch by two inch square picture, it is not that easy.

We want Lilli to communicate, but quickly without frustration for everyday functioning.

We are expanding the idea of the "Yes No" cards to different catagories, such as food, movies, feelings, activities, and I'm sure we will come up with more.

Since it is so new I can't really explain well how we will use them or if it is working. We are going to start small, putting only a few choices out at one time. We envision that eventually we will leave the entire page open to Lilli for choices, but we know that we have to introduce it to her on a smaller scale. This may take a few days or maybe months. We never know with Lilli. But I wanted to share the idea. Even if it ends up as a big flop, maybe someone else can take this idea and make it work for them. This is like a super-cheap version of the communication ipad app Proloquo2Go. (which is $189.00).


Now to get busy with scissors and a ton of teeny pieces of sticky velcro...

                                                                                                                                                                   
                                                                                                                        

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.

 

 

Not Speechless…Brilliant

I am utterly speechless at this week's events. It doesn't matter, though, because Lilli is certainly NOT speechless anymore. And that is the miracle that continues to unfold at our house on a daily basis. From last Saturday to today, we have traveled years. As always, there is too much to tell in a blog post. It would be a book. Perhaps one day, it will be one. If not by me, it will be authored by Lilli herself.

I have to admit I am a little frustrated at the timing, for the sole reason that I do not have enough time to write every tiny detail down. Jasen is in his most intense time of school yet; 12 hour days taking classes in the mornings and treating patients in the clinic all afternoon until after dinner every night. For the past two weekends he has been gone all weekend for board reviews, and boards are coming up in March. If he ever seems like the absent father in my blog, he is far from absent. What he is doing is all a huge part of Lilli's story, which will just have to come out in future posts. He helps when he can, and he is a great dad. In the meantime, I continue to wade through the days, sleep deprived from a sick toddler this week and only slightly overwhelmed by the mounds of housework. But my heart is full of joy, and my mind full of wonder and amazement. I feel compelled to let the housework go for a little bit and write as much as possible while Josh naps. Mainly, I want the world to know that a non-verbal child who does not make eye contact, chews on toys and makes squealy sounds at inappropriate times just might be highly intelligent and very aware. I want other parents like me to look at their child with hope and possibilities. And I want others who know Lilli to know how to treat her.

There is no way I can sum up in one post everything that happened this week. I am unsure of how to begin. Lilli is typing incredible things, revealing new heights of her intelligence. She can read several sentences at once and do math. She is typing longer sentences and answering questions. Her true feelings about people and situations are coming out. "Treat me lik a big grl" is her most-often typed phrase. This week she told me that she wanted to read "big girl books." We stopped reading the baby board book Moo, Baa, La La La to her and started with her very first book request: The Secret Garden. ("Secrt grdeen"). It happened while I was reading Ten Apples Up on Top to her very slowly, and she was mad at me. I asked her to type and explain why. It turned out she wanted me to read a different book, The Secret Garden. She told me she had seen it in Chloe's room on the floor once, and liked the cover. She described it to me perfectly. ("gree frrst key" – green, forest, key). I had not seen the book in months, yet she typed the title and told me what it looked like. I found it in a box in storage in the basement. It had been in that box for months. Yet she remembered the cover and how to spell the title (close enough).

When I pulled that book out of the dusty box in the silent basement and looked at it with a flashlight, the "scales" fell from my eyes.

She's not just "aware." She's brilliant.

How did she learn how to read? How long ago had she seen that book and wished someone would read it to her? Possibly last summer. Maybe farther back than that. It was too advanced for Chloe, so I'd packed it in a box labeled "older books" along with some Magic Treehouse books and Charlotte's Web, among many other favorites of mine from my teaching days. Does she have a photographic memory? How did she remember the title? I have never typed the words "secret" or "garden" with her. I asked Leslie and Morgan too. No, they had not either.

It was not the full length novel, it was a shortened chapter book version. She sat and listened to the whole thing, and typed that she loved it. She since has listened to The Velveteen Rabbit, Cloudy with a Chance of Meatballs, and several other short chapter books. I came home with a stack of Cam Jansen Jr. Mystery books yesterday. She likes them. Leslie started reading Roald Dhal's The Magic Finger to her. We literally jumped from baby board books to second and third grade books in a day. Unbelievable. I don't care for the phrase, but I feel like we have been "dumbing her down" all this time because we did not know she could read. No wonder she sat and flipped through those baby board books with boredom. She has had them for eight years. Nothing against Brown Bear Brown Bear, What Do You See? but sometimes you just gotta move on. The important detail about all of this is that Lilli does not act like she is listening. She crawls around, chews on Lego Duplo blocks, and rarely even gives the book a quick glance. For years the teachers at school were making her sit at a kidney bean table and trying to make her flip through board books and LOOK at the pictures. TURN pages. POINT at the picture. She hated it and struggled, most of the time throwing the books on the floor in anger. I guess she doesn't need the pictures, and she probably was mad because they were "baby books." I'll have to ask her about that.

Among many other revelations, she also typed that she was mad because the nurse talks to her like she's a baby, that Chloe "bugs" her ("her bug me"), and that she wants to ride a bike like Chloe with two wheels. She is not happy with how differently we treat her and her sister. How do I deal with this? Lilli cannot brush her own teeth or dress herself. She has a long way to go with using utensils and has never attempted to brush her own hair. She does not want to be treated like a baby, yet she needs help like one in so many ways. I have been focusing on the things she can do that Chloe does not, such as read, type, and ride a horse. (A therapy horse, but still.) This is sibling rivalry through an ipad, a new experience for all of us. Lilli's pent up years of frustration are tumbling out through mixed-up, misspelled words on a screen. The "auto correct" feature makes things even more confusing.

Her eighth birthday celebration is too much to write about in this post, but can be summed up with one word: moody. She named her birthday fish "Grover," and loved her new Polly Pocket doll. (I told her that is something an eight year old would like. At the last minute I had to run out to Target and shop in the "big girl toy" section to make sure she got something that Chloe did not already have. Just a few short weeks ago I was shopping in the preschool Elmo section for her.) She can match rhyming words, listen to an entire chapter book and answer questions about it, and seems to know way more about math than we realize. I predict that this coming week we will be blown away by her knowledge of math. I told her that I would teach her how to play the piano, and I have been talking to her about chords, sharps, flats and octaves while using a piano app on the ipad. Every day this week, she has stood in front of our piano and experimented with two note "chords." Will a child with cerebral palsy be able to play the piano? Only time and miracles will tell.

Dumbfounded is an understatement for all of us right now.

I read the "Hello Reader" level 3 version of A Girl Named Helen Keller to her today. After I'd read her the entire thing and she hugged and kissed me at certain meaningful parts throughout, I asked her what she thought of the true story (which parallels Lilli's in many ways.)

"Really cul." (really cool)

She told me last night that she knew that no one believed in her. I asked her what changed. She typed "you helped me." But I think Chloe actually has more wisdom about all of this. This morning I asked Chloe, who has been getting the brush-off a lot his week as I've focused on communicating and typing and reading with Lilli, "Do you know what is happening with Lilli right now?"

Chloe answered, "Yes! She knows how to read! It's a miracle! Jesus helped Lilli know how to read!"

Yeah, I think so too Chloe.

New book for her birthday from Morgan. Lilli picked out her own outfit. Such a girl.

Reading her birthday card from mommy and daddy. Earlier, she typed that she was mad because Chloe was so close to us, and did not want her next to her when we sang happy birthday. Oh the sibling rivalry!

working on rhyming words with Leslie