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.

Duh.

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.

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.