Hope from a Funeral

I recently got back from the funeral of a close loved one. This dear person always asked about Lilli. Always prayed for her. Knew that I had a difficult and challenging situation. She listened to me. She cared about me. She showed love to me and to my husband and children. I will miss her.

I flew there by myself, for several reasons. When people at the funeral asked about my family, I did not try to explain that we could never fly with Lilli. At least not right now. I cannot imagine how we ever would. Out of the long list of reasons, I think autism and sensory issues are on the top; a close tie with seizures. Aside from the insane panic that a potentially life-threatening seizure would cause on an airplane, I also think of how in the world I would keep her from shrieking, pushing, crying, bolting. How I would get her through the crowds of people in the airport. How she runs away from me. The public bathroom. The meals. The simple act of getting her to walk down a teeny aisle and into a claustrophobic seat. Traveling by car is challenging enough. If I have a hard time dealing with some things in a mini-van on the side of the road, I am pretty sure I would not be able to handle them well at 30,000 feet. Closer down toward the bottom of the list is the minor fact that college students (which I consider us to be since my husband is in school full time and we are living on school loans) do not have the luxury of flying whole families across five or six states at the last minute.

How I wanted to go as a family. How I wanted to take even just one child with me. I am now beginning to see how unfair I have been in the past, to Lilli. Before we knew what was going on in her mind -  that she is really "in there," and cares deeply about what any other child cares about, it was much easier.

Before, it was easier for me to say, "I'll just take Chloe. I can't take Lilli." I didn't think Lilli would care, or understand. Now I know that she does. For this trip, I had the fleeting thought that I could drive the 12 hours with Chloe, and maybe Josh too. But there was no way I could take all three. I would not even take Lilli alone for many reasons. The drive was long for the short time I would be there. I looked at trains. I looked at flights. Since I could not take all three children, and it was unfair for me to take one or two, and ultimately we could not even afford a plane ticket for any of them, I took no one.

In the end, I flew up by myself with pictures of the kids. I look forward to the day when traveling is easier. But honestly, I do not know if that day will come. I will just have to hope and pray that it does someday. It is hard to see into the future when you are in the thick of things.

I came home with a hundred or more memories, saw people I had not seen in decades, and had the rare chance to hug my siblings, nieces, nephews, cousins, and dear old friends. Of all the meaningful encounters, reunions, and shared tears I experienced, I will only share one here. Not because it is any more important than anything else about my trip. But because this blog is about Lilli, and about me being Lilli's mom.

A woman came up to me after the funeral. I had not seen her in at least fifteen years. She introduced herself as Amy's mom. But I knew who she was before she even spoke. I went to youth group with Amy. I remembered her right away. I asked about Amy and she showed me pictures of Amy's beautiful family. But then she asked me about my children. She knew I had three children, and she knew I had one child with special needs. How did she know? I assumed prayer lists, women's groups, and word of mouth probably. I explained how we came to live where we do because my husband is going to school. And that the reason he is going to school is ultimately because of Lilli, and other children like Lilli.

She said, "Yes, children with special needs have a way of changing our lives like that. I became an OT to help my son."

And that's when I remembered Steven. Her son.

Steven has special needs.

It's funny how perspective changes in an instant. In a split second, I zipped from a teenage memory of Steven at a youth group activity, quietly hanging out near his big sister... to a mother speaking to another mother of a child with special needs. In a flash, I had a completely new view of Amy. It is how I look at Josh and Chloe now. How they are the siblings. How they will spend their lives helping and encouraging their sister Lilli because she has special needs. Amy became a doctor because of Steven. I did not know that. I had an instant longing to sit down and ask this mother to tell me everything she knows for the next five hours.

Instead, I asked how old Steven is now.

He is thirty five. Two years younger than I am. She smiled as she told me how well he is doing, how he has a job and friends through the programs he is involved in. How he is happy. How he has activities and a social life. How she used to think that life would "end" after school, but then found out that it was only just the beginning. That great programs and activities do exist in some areas for adults with special needs. She told me to have hope. And it brought tears to my eyes and soothed my worried heart. Even now, tears are springing up as I think about how her few words will impact me forever.

I later thought of another mom that was there, who has an adult daughter with Downs. I wish I had spent time talking with her also. She said hello to me, but I was distracted. I wish I could go to lunch with these mothers and talk with them for hours. There is nothing like talking to someone who has "been there."

I take rare messages of hope from others and breathe them in like oxygen after swimming up from deep waters. I tuck them away and treasure them like prized possessions. What a strange, sweet interruption to mourning as I reunited with this mother of a boy I knew so long ago.

She gave me hope. I wonder if there is any better gift in life to give to a person... than hope.

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.

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...

                                                                                                                                                                   
                                                                                                                        

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.