Thursday, June 28, 2012

Pancakes, Seizures, and Joy

One morning a few weeks ago, I grabbed the camera and captured a moment of my three children together. 
They are seated around the kitchen table, all eating the same thing. Pancakes. The television is off. No one is whining. Well, at least not at the second that I snapped the picture. This seemingly ordinary moment is a blessing to me. Raising Lilli has taught me to recognize these moments, and be thankful for them. This simple picture of my kids eating breakfast together speaks volumes to me of miracles and answered prayers. It brings me joy to look at it, to think about the three of my children interacting. They are all feeding themselves. They are sitting together. Chloe talks, Josh is starting to talk, and Lilli listens, laughs, and takes it all in. I now know she is taking part in the conversation in her mind. I am so thankful to finally know this. She puts her hand on her neck, wanting to say something. I now recognize this meaningful gesture of "I want to say something but I can't get it to come out of my mouth." Despite her silence, she is a part of it all. She reaches across the table for Chloe and Josh. She wants kisses and hugs. She wants Josh to know that she thinks he is adorable and funny, and Chloe to know that she loves her. Since she cannot tell them, she grabs them and shows them her affection instead. I treasure this.


There was another moment that occurred at the kitchen table last week, that I did not take a picture of. In comparison, we do not generally want to remember stressful, scary moments. I was feeding Lilli dinner. Breakfast is finally easy, because she can pick up pieces of pancake with her fingers. Using a fork for dinner is still a challenge right now, and we help her. The other two children were already finished and had been excused from the table. Jasen was not home from doing clinic hours yet. Halfway through her meal, Lilli had a seizure. I was taken aback, because she rarely has a seizure when she is wide awake. Most are during the night, early in the morning, or afternoon naps. I also think she has never had a seizure during a mealtime. It was scary for me, even after all these years of seizures. But thankfully, Jasen was already on his way home, and the seizure only lasted three minutes. Three minutes feels like forever, by the way.

I read a quote in a book recently that I wrote down on a post-it note to contemplate later: "While I may not always feel joy, God asks me to give thanks in all things, because He knows that the feeling of joy begins in the action of thanksgiving." That is from the book One Thousand Gifts, by Ann VosKamp. (Disclaimer: I have not finished the book yet, and I do not necessarily agree with everything she wrote. However, I have enjoyed it so far and it has sparked some great conversations with others.)

Give thanks in all things. Then feel joy. What a crazy concept. It's easy to give thanks when good things happen. But the bad stuff? Kinda hard. Easy to give thanks for Lilli eating a pancake. Not so easy to give thanks for seizures. Wait, it says "give thanks in all things." Not for all things. Meaning, find something to be thankful about in the situation, even if it is bad. Is there something to be thankful for in Lilli having that seizure? Actually, yes. Several things, believe it or not. She had gone three months without having a seizure. I am thankful for those three months! This month has not been so great, with one each week. But up until June, she had not had a seizure since the beginning of March. That is really amazing. Looking at the bigger picture, her seizures have changed over the years. They are short. They are…different. I don't feel the need to go into detail about that right now. I will just say that even though they are still scary, they are slightly less scary than they were a few years ago. I am thankful for that. I am thankful that my husband was on his way home, and that I knew just what to do. I am thankful that I did not have to call EMS and go to the emergency room. I am thankful that sweet Chloe is not afraid anymore during Lilli's seizures. She is helpful and calm. We deal with it. She listens and does what I ask. I asked her to run and get the phone, and she was by my side with it in a flash. This brings tears to my eyes right now, but I am thankful for her.

For many years, I have kept a prayer journal. I only write in it every few months. On one page, I write down the things I am praying for, and the date. On another page, I write down answered prayers. Throughout the journal since Lilli's birth, I recorded specific things I was praying for with Lilli's eating abilities. For her to drink without choking. For her to eat solid foods without choking. For her to gain weight and be healthy. For her to feed herself. This simple act that most of us take for granted has been a challenge for Lilli her entire life.

I have also recorded prayer requests about Lilli's seizures. Her whole life, for her to have less seizures. For her to have none at all. As simple as that.

The most important thing about this journal is that I look back through it. Whenever I feel discouraged, it helps me see how many prayers have been answered faithfully over the years. And it reminds me that many will be answered in the future. To see Lilli feed herself cut up pieces of pancake…that brings me great joy every morning. When I look back through the journal, I get teary with gratitude for the blessing of her ability to simply eat and drink after many years of struggling with it. May I never forget what miracles God has done in Lilli's life. Because it really is a miracle that she can feed herself pancakes. When I think about her seizures, I am also thankful. Not that she has them, but for what God has done in her life and all of our lives through them. It is true, that God can take a bad situation and use it for good. This is true for Lilli in countless ways.

Once I wrote down what a neurologist told me. He said that the chances of Lilli growing out of her seizures is less than one percent. And all I could think about was that there was a chance. I still think about it. Once when Lilli was four, a therapist told me that statistics say if a child does not talk by the age of six, their chances of talking significantly decreases. We hurried to "beat the clock" and worked on communicating. But she did not begin to speak. When Lilli turned six, I thought about this. I decided to focus on that chance that she will still talk one day. I pray for it all the time. I know it is her number one desire, to talk. All I can think about is those children I have heard of who spoke for the first time at age 11, age 18. That it happens. There is a chance for Lilli. There is hope. Hope for miracles.

Yesterday, Lilli said "sh." Morgan sings The Wheels on the Bus, and she tries to get Lilli to do sign language signs and finish the line "The mommies on the bus say sh sh ___." Lilli is trying to make sounds every day. She learned a few new sign language signs. She did a bunch of things that made Morgan and I whoop and clap. Being thankful for these things brings joy. But being thankful in everything God is doing through this little girl who is working so hard every day just to simply eat and communicate, despite having seizures on top of many other challenges… that is a deep joy that I cannot explain. If you know Lilli personally, then maybe you do understand.

Be joyful always; pray continually; give thanks in all circumstances. Not always easy to do. In fact if you know me well, you might remember a time when I was not joyful. But I want to have joy in all circumstances. And I am learning. This is something to strive for, to find joy and give thanks in everything. This is where I find hope.

There is a great thing about hope. Anyone can hope for something when there is a chance. But God can do things even when there is no chance. So that means I can continue to hope for the seemingly impossible, and be thankful in all that God does along the way.

Sunday, June 3, 2012

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:
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.