Tuesday, October 16, 2012

Waking Up in the Middle of the Night

I had a thought the other morning, after being woken up yet again by my two year old at some odd hour in the middle of the night:

How awful it must be, to be a kid that cannot speak, and wake up in the middle of the night with a need.

Joshie came running into our dark bedroom talking about something. Jasen, dear husband that he is, got up and took Josh back to his room. But minutes, later, Josh was back, saying the same thing, whatever it was. In my foggy sleepy state, I forced my brain to translate “Josh-speak” and mumble to Jasen, “He said he wants a drink of water.”

And that was the trick. He was thirsty, and sucked down a half cup of water, and went back to sleep.
A few hours later I stood by the coffee maker and groggily told Jasen, “He said ‘De da wa-were.’ That means he wants a drink of water.”

“Huh? ……Oh.” Jasen responded. Then we both drank huge cups of coffee and went on with our days.

I was thinking about Josh, who is actually receiving speech therapy now, and how he is so hard to understand sometimes. HE knows what he is saying, and he knows exactly what he wants. But he cannot always get us to understand. He has intelligent thoughts and ideas, but trouble communicating them. He just cannot get the words to come out of his mouth right.

Kind of like Lilli.

When Lilli wakes up in the middle of the night, she does different things. Sometimes she makes sounds, like “Mee mee,” or “Ss, ss, ss.” Sometimes she makes breathy noises and growls or laughs. She will grab us or grab her neck. Grabbing her neck, we know now, is her gesture for “I have something to say but I can’t get it out.” But how do we figure out what she wants at three or four in the morning in the dark?

Only recently did I have an “a-ha” moment in the middle of the night about Lilli. She woke up around four a.m. and started to make noises. I don’t know how it is in other people’s houses, but in ours, when someone wakes up, usually that means several others are woken up too. So Jasen and I were having a discussion in the dark about why Lilli was awake.

Ok, I was the one who was having the discussion. Jasen was trying to sleep.

I decided that maybe, just maybe, Lilli had to go to the bathroom. And she can’t tell me.

After eight years, this occurs to me for the first time.


During the day, we have the potty button that “speaks” for her, we have her dragging us to the bathroom, we have pictures she can point to, she can type it, we have a certain specific “potty whine” she does that I recognize, we have our little notebook with the schedule and all our handwritten notes of the last time she peed, so that we can say to each other or ourselves, “Hmm, Lilli has not gone potty in awhile, let’s take her.” (Just writing all of that took a little bit out of me. Potty training has been long and difficult. But it is because it is not “typical.” We have a few more obstacles thrown into the mix.)

I think about how potty training with Chloe went, and how there were those times in the middle of the night when she would wake up whimpering and we would have to stumble through our sleepiness to complete the routine in the dark.  I think, well, it’s worth a shot. We’re all awake. Might as well see if that’s the problem.

So at four a.m., I take Lilli to the potty.

I whisper to her that this is different, we don’t have the lights on, I’m not going to play an Elmo movie or sing Twinkle Twinkle Little Star. OK, but I can whisper it, I think. So I whisper Twinkle Twinkle Little Star in the still dark bathroom.

And there it is.  She had to go.

I hug her and tell her I am so proud of her. She squeezes my neck super hard, for a really long time as I crouch down next to her sitting there. I imagine her to be saying, “I’m so glad you finally realized that was why I woke up. I am so glad you finally figured it out.”

Then I take her back to bed and she goes back to sleep.

I confess to you that I got teary. That’s no big surprise to anyone since I am such an emotional person. But this was a big moment for me, because I had a realization.

Special needs aside, sometimes kids just wake up simply because they have to go to the potty.

We tend to make things more complicated than they are. Mysteries can do that. For so many years we tried to figure it out. We thought that Lilli’s night waking was due to something neurological, or seizure activity. And many nights, it was. Lots of kids with special needs do not sleep well. When you see a bleary-eyed parent of a newborn, you understand why they are sleep deprived.  But many, or should I say most? parents of kids with special needs are still bleary-eyed after a decade. For various reasons. Some parents have to get up in the middle of the night to tend to feeding pumps or various beeping monitors, some children are on medications that disrupt their sleep, some children have seizures… there are lots of reasons. Some known, some unknown. When Lilli was a toddler she used to wake up and laugh, loudly. Squeal with delight and clap her hands, for over an hour. Night after night. It went on for months.

That… was torture. It was not at all funny.

We tried a lot of things over the years. Now, Lilli does sleep through the night most nights. Certain things have helped her sleep. One is regular chiropractic adjustments. (One of many motivators for my husband going to school to become a chiropractor. He may have even made the final decision to be one at four a.m. I don’t know.) From supplements... to certain foods…to long baths... to driving around the block six times… to taking her to a chiropractor, the list of things we have tried over the years to get her to go to sleep and stay asleep is long. But I am just happy to have realized that sometimes, when a kid with special needs wakes up in the middle of the night, it might not have to do with their special needs. They just might be like any other kid and have to use the potty or want a drink of water. With a child who cannot talk, this is guesswork in the dark at an exhausting hour.

I hope that one day we will figure out a good way for Lilli to tell us what she needs in the dark.

For now, I am just happy that sometimes… I guess correctly.

Saturday, October 13, 2012

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...


Friday, October 12, 2012

What Suffering Can Teach

Taking a step outside everyday life for a day or two is always good for new perspective.

Last weekend, I traveled to visit someone close to me. She is very ill, and I had not seen her in awhile. I was not sure if this might even be the last time that I see her alive on this earth.

When I entered the room, I noticed the sound of the oxygen machine running. The smells. The feel of awkward silence and sickness. It is almost like people have visible thought bubbles above their heads in situations like this, saying "Why did this happen?" and "Why this suffering?" Also, "What do I say?" and "What should I do?"

I do not have great wisdom about suffering. But I did realize a few things during this visit. I had not felt uncomfortable. I had prayed with her, touched her, hugged her, looked into her eyes and spoke words of comfort to her. I showed her pictures of the kids and told her funny stories. I made her smile. I knew she was glad I had come.

I realized that I had learned all of this from the many times when Lilli was in the hospital. I was not afraid of the medical equipment because it was familiar to me. I remember how it felt to have people come and visit us. Lilli has been in the hospital many times. I have been in the hospital a few times myself. I remember that the best things people did that brought us comfort had to do with simply being there. Flowers made the room beautiful, cards with heartfelt words and long distance phone calls were touching. Gifts were appreciated. But visiting us, hugging us, praying with us, talking with us, and simply sitting in a chair there in the room with us - that brought us comfort. People came and did small things like get us drinks or snacks. People touched and talked lovingly to Lilli (even when she could not respond), and told us things that made us smile. Many prayed. Some stayed for only a few awkward moments, while others stayed for hours or came day after day. I do not remember all of the gifts or flowers, but I do remember faces. I remember who was there. I remember who came.

When we suffer, we do not know any of the answers to the "whys?" Suffering can bring crushing heartbreak and desperate sadness.  Most of the time we cannot possibly understand how any good can come out of our suffering. Most of us try to wrap our head around the whys and the why nots.

We all suffer. All of us do. Something happens when one person who understands suffering connects with another person who understands suffering. There is something inexplicable about the experience. It is almost impossible to be prideful. Many people learn humility as they learn to accept help from others. We cannot help but see a different perspective on life. The truly important things are revealed as the frivolous fades into the background.

I love how the Bible tells us to do things that are not comfortable. Jesus tells us to look after the sick. That's because it does not come naturally to most of us. I know it never came naturally to me. Many people will use the excuse, "Oh, I hate hospitals, but I will send flowers." But I can tell you from experience that hugging a beautiful flower arrangement is just not the same.

Whenever I write something like this, I always wonder if readers think I am implying that I am better than others. Wow, I am writing this because I realize how wretched I really am. It really is true; the Amazing Grace that saved a wretch like me. I am learning slowly, and just sharing what I learn along the way.

The words in 2 Corinthians say that Jesus is the Father of compassion and the God of all comfort. It says that He comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

No one wants to experience suffering. But suffering reveals a lot in a person. Suffering refines us, and teaches us.Though I do not want to suffer, I have learned much through it. And I have learned about the God of all comfort.

Thursday, October 4, 2012

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 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?