Sunday, December 9, 2012

This Year's Early Christmas Present from Lilli

Last year, my early Christmas present was Lilli typing on the ipad by pulling my hand toward each of the letters on the keyboard. This year, my Christmas present is Lilli communicating through the ipad completely on her own. This is quickly becoming old news, because I have not posted enough on my blog lately. Each day that goes by before I finish this post, she does something new and I think about how I need to tell everyone (and record the progress for myself).

It is still in the beginning stages, but it is really, truly happening. Since October, we have moved into the next phase of Lilli's story: the phase where she begins to communicate independently - without us touching her arm or supporting her hand. The order went from using our homemade velcro alphabet letter cards to "Yes No" cards to "word cards" and "phrase cards" to now the newest version of her communication app. Looking back we can see how each step naturally led to the next one. And here we are.

In the very beginning, we held her hand. Now, I do not recommend that method for everyone, even though it was life changing for us. If I ever write a book one day about our journey, I will explain in detail why I do not think it is a good idea. We found out the hard way. There are great insights and dangerous pitfalls in using that method. In hindsight, we did need that boost, to know that she can read and understands so much more than she lets on. But then we had to take major steps back, to "start over" so to speak. I know it all happened for a reason. And the ipad in the sink, even though that was a bummer, was an important part of the process because it made us try new things. I think in Lilli's case, typing while supporting her hand helped us know what is going on in her mind much earlier than if we would have waited for her to type completely on her own. That day of independent typing has not come yet. But I know it is coming.

I could write another entire post on how we need to expect more from children with special needs, and give them the benefit of the doubt. Lilli is very smart. But if she did not ever have someone believe in her and teach her how to use an ipad to communicate, she would probably still be sitting in a class somewhere putting blocks in a cup over and over, and listening to Brown Bear Brown Bear. Seriously. Instead she is doing third grade level work, learning about math, science, geography, history,  and reading books that third graders enjoy.

So this app, "Proloquo2Go," and the ipad have been life-changing for us. Lilli is using the app without us touching her arm, to tell us things. She is not typing words, because that is very tedious for her and the keyboard is too small. Instead she is navigating through the communication app to put words and phrases together, all by herself. She is tentative and inconsistent. But let me tell you, it is thrilling. Because it is Lilli. Our real Lilli, talking to us on her own without being touched.

The "velcro words and phrases" phase happened in October. I laugh thinking about it because we only did it for a few weeks. All that printing, cutting, laminating, and velcro. However, it did lay the final part of the foundation in transitioning her to this current phase. This is how it happened. One morning during school time,  Lilli was upset. Her teacher Leslie tried to figure out what was wrong. Lilli would not type what was bothering her, and she fussed all throughout her school session.

A few days later, we came up with the idea to put short velcro phrases on a poster board instead of in a book. This was so that she could go over to it and quickly find a short phrase on the board she might want to tell us, such as "I feel sick" or "I'm thirsty." I also included phrases like "I like this," and "I don't understand." We propped the board up in her school room, and waited to see if she would use it on her own. All we did was point to it and explain verbally to her that she could use it if she wanted to tell us something, instead of typing it out one letter at time.

It worked.

Later that week during school, Lilli was fussy and whining. She got up on her own, walked over to the board, tore off the phrase "I'm frustrated," walked over to Leslie and thrust out her arm dramatically to hand it to her.

Leslie said, "You're frustrated, Lilli? Can you type to me why?" Lilli typed with Leslie's help, "Want to play in playroom but no because school."

Leslie said, "Lilli, I'm proud of you for telling me why you are frustrated. I am going to let you have a little free time right now because you did such a great job telling me what you are thinking. Then we will go back to school work."
Lilli chose the velcro phrase "I'm frustrated" and pulled it off this board.

Leslie said that Lilli happily played with some toys for a few minutes of "free time," and then willingly worked for the rest of the session with a completely new, happy attitude.

What a wonderful thing it is, to be able to express your feelings in "words."

Lilli used the velcro words for other situations. We took them shopping in a small container and Morgan spread them out on the ground at Michael's. (Not a positive experience. Shopping usually is tough.) We took them on other outings and we used them around the house. I used them to ask Lilli what she wanted to eat for every meal. Morgan used them to ask her about activity choices. The whole "word card choice" thing was going great. And then...we got the communication app Proloquo2Go re-installed on the ipad. That was November 1. (We had gotten the new ipad replacement from the school in October but we did not get the communication app right away).

I believe that as soon as we began the transition from velcro word cards to word "buttons" on the ipad, it clicked for Lilli. Proloquo might be a program that clicks more easily for some people, but Lilli had trouble with it when we used it last year. We also made a lot of changes to simplify it so that Lilli could navigate it herself. She is slowly picking it up and learning how it all works.

One day, I was talking in the kitchen to my mother in law about a piece of fleece scrap I had leftover from a blanket I made last year. She suggested I use it to make a scarf for one of the kids. As I held it up and talked about making two scarves out of it, Lilli came running into the kitchen. (Years ago I might have thought it was coincidence, or that she wanted a snack or something. Now, I know that Lilli has excellent hearing and she comes into the room when we are talking about something she wants to be a part of. It's true.) See, I have three children, and I was saying I could make two scarves for the kids. I totally get why she came running into the room! Just because kids cannot talk, that does not mean they cannot hear!

I showed it to Lilli and asked her what she thought of the blue fabric with dogs. Morgan put the ipad down on the kitchen table in front of her. Lilli hovered her finger over the ipad and touched:

The "I have something to say" button - opens a new page with choices of phrases.

The Negative folder opens to give choices of negative words and phrases.  The screens "scroll down" to show many choices below.

Lilli pushed "I don't like it"

Then she pushed "no" for added emphasis, I guess.

We were stunned. And proud. As you can see, you have to push several buttons to get to the desired phrase. This was not an accident. Witnessed by Morgan, my mother in law, and myself, Lilli had told me completely by herself that she did not like the fabric for a scarf for her.

The other night, she was tired and whiny. I put the ipad in front of her and simply said, "What do you want to tell me?" She pushed three buttons in a row to say:

"I want bed."

So I put her to bed, thinking how incredible it is to have another window into my little girl's mind.

Each day brings a new surprise.
Last week: "I want to wear a green shirt."
Yesterday: "Hi. How are you?"
This morning after I told her something good: "I am happy."
At lunchtime: "I am hungry for lunch. I would like a turkey sandwich."

This is only the beginning of yet another exciting part of Lilli's story. With the help of Leslie, Morgan, and Lisa (her teacher and therapists) the app is being continually programmed and improved each day, as we add things to it that Lilli might like to talk about. We are loving this app. I think Lilli loves it most of all.

After all, it is her voice.

Sunday, November 25, 2012

Hope and Forgetting to Have It

If you know my six year old Chloe, you know she loves the Wizard of Oz. Her fascination with it all began by my taking her to an elementary school play. I took her to that play last spring. I’ve mentioned before in my blog that I often write posts and then do not post them. Sometimes I don’t like them. Sometimes I decide it is too personal and I keep it for myself. Sometimes I just don’t feel like it is ready. This is one of those posts. It is just how my heart works, I’m not sure why. I wrote this and tucked it away months ago. But this morning I woke up and decided out of the blue, today is the day for that post. It seems random. Maybe it is because there is someone out there who needs to read it this week. Only God knows. I just wanted to explain that it happened almost a year ago. But it was significant enough to remain on my heart and mind all this time. I hope it touches someone else today.

* * * * *


I think about it all the time. Hope is what keeps us going. And I am always looking for ways to keep it. Because it can be forgotten, and it can be lost.

Since Lilli started to communicate to us through her ipad, I have felt more positive about having a child with special needs than I have ever felt. The thrill of communicating with Lilli has pushed the other significant difficulties into the background a bit. I am not clueless about what Lilli wants, thinks, and feels anymore, which was most of the frustration before. It is still in the beginning stages, but the thought of her communication getting better, well, that gives me hope for the future. I have to look for things to hope for, and remind myself that God can do anything.  It is part of the reason why I write things down. When I am feeling overwhelmed and depressed about Lilli’s needs, I can go back and read what I wrote on Lilli’s eighth birthday and remind myself that she was born for a purpose, and created to be this way for a reason. Even with knowing all of this, I am only human.  And sometimes, I forget to have hope. Even after getting all teary and pouring my heart out about how Lilli was created by God to be exactly who she is.

I forgot on one particular night, for just a few minutes.

I took Chloe to see a play. Chloe loves theater, singing, dressing up, and all kinds of drama. She creates much of the drama in our house each day, sometimes with costumes and sometimes without. So when I heard about the free performance of the Wizard of Oz put on by a local elementary school, I was excited to take her to see other kids perform a play. I know Chloe will be on stage someday. She uses her plastic microphone and costumes almost every day at home. Since my mother in law was visiting, I was able to take Chloe and not worry about childcare for the other two while my husband was at school. Chloe skipped across the parking lot next to me, delighted about seeing the play. I, once again feeling a mixture of guilt and thrill for being out with one child while the other two stayed home, made my mind up to truly enjoy this short date with my five year old future actress.

We said hello to a teacher’s aide that I knew as we entered the lobby. I held Chloe’s hand tightly as we wound our way through the crowd into the seating area. The auditorium was packed with rows of extended families with cameras ready, and toddlers trying to climb over the backs of seats. Chloe and I picked our way to two seats way in the back, crawling over a few people to get to them. I read the photocopied program while Chloe bounced on the flip-up seat. Finally the lights dimmed. When the curtains pulled back and an eight year old Dorothy began to say her lines and sing, I was blindsided with an unexpected flood of emotion. I got teary and a lump formed in my throat. I was a little shocked at my reaction, but I should have known better. Moments later when an adorable group of elementary-aged munchkins danced around and sang, I put my fingers up to quickly wipe tears from my eyes.

Chloe noticed. She peered at me in the darkness.  She whispered loudly as five year olds do, “Mommy, why did you just do THIS?” and she put both of her first fingers up to her eyes and copied me.

“It’s nothing, sweetie, watch the show,” I whispered back.

I prayed and tried to get a grip. I have these moments every once in awhile. You see, this was Lilli’s elementary school putting on this play. It snuck up on me. Even when we walked in the door and saw that teacher’s aide, I thought I was fine.

That teacher’s aide was Lilli’s teacher’s aide in her class last year.

I thought about how Lilli went to that school for two years, and would still be in that building everyday if she were not medically homebound because of her uncontrolled seizures. I thought a ridiculous, heartbreaking thought that she was the same age as those other kids, and that I wished she could be up there on that stage dancing and singing with them. I went down that mental road that a mom of a special needs child should never go…the “What if” road. As in, “What if Lilli did not have special needs? Would she be friends with those kids right now? Would she be in the play? Would she have been picked to be Dorothy? Or a Munchkin?” I was torturing myself and discreetly wiping away all of my mascara.

Singing and acting talent runs in our family. I thought about how Lilli recently put her hand on her neck and typed on her ipad that she wished she could sing. I wish I had handled things differently that day. We were listening to a kids CD in the morning called “Seeds of Courage.” I love the first song, where there is a solo part that is sung by a young girl. Every time I hear it, I think about how I love her sweet, clear voice. Lilli was standing near me during that song that morning, and put her hand on her neck like she wanted to say something. I pulled out the ipad and asked her to tell me what she was thinking. She typed that she wanted me to turn it off, because hearing that girl made her want to sing. And she can’t. I turned it off and sat down with Lilli. I told her that everyone has different gifts.

I said those exact words to her, and I meant a lot by it. But I obviously just thought the deeper meaning to myself, and did not bother to explain it out loud to her. Hours later, she typed to her therapist Morgan about “opening presents.” Morgan was confused and did not tell me until later. By the time her teacher Leslie came for Lilli’s two hour block of afternoon school time, Lilli was really upset. I asked Leslie if she could figure out what was going on, and she told me Lilli kept typing that “everyone has gifts,” and she wanted to “open them now.”


I had to explain to Lilli that there were no presents, and that when I said “everyone has different gifts,” I meant talents. Poor girl went all day thinking that she was going to get a present, because I had told her “everyone has different gifts.” (We must be careful to be literal when speaking to our children.)

But even though it is a hard concept for children to understand, it is true. Lilli does have gifts. She has gifts and talents that I do not have. To see her on the outside, strangers might think she has less than other, “typical” children. But to know her, she is incredibly blessed, and we are only beginning to learn what Lilli is able to do. And bonus for us, she is a blessing to others. There are people in Lilli’s life who adore her, who love spending time with her, and who want to know what makes Lilli tick. She can touch other people’s lives in a way that most cannot. That is a gift.

So back to the dark auditorium, where I am wiping my eyes.  I guess everyone does this in some way or another. We can all mourn the thought of how “things might have been” or “should be.” I think it might be normal for any parent of a child with special needs to have these thoughts from time to time. We can’t help it. We see another child the same age as ours and start to think about the what ifs. You can do that with any situation in your life. Especially the situations in which we had absolutely no control. What if things had been different?

 But that’s just it. This is the way it is.  And it is for a reason. For a greater purpose than we can fathom. There is a verse in Psalm 139 that says, “All the days ordained for me were written in your book before one of them came to be.” This is the verse I go to when I feel like life is spinning out of control. I believe it with all of my heart, but I need to read it constantly to be reminded. To be reminded that God is in control. He has it all planned down to the finest detail. He has my future already planned, and he has Lilli’s future planned. I take great comfort in that, knowing that He has plans for my little Lilli.

All of our children are going to have different gifts and talents. They may not all be up on stage. They might not all be running on a sports field. They may not all be exceptional artists or musicians. But each one will have their own purpose in life, blessed by God and created to do different things. Why do we waste time lamenting about how we wish things could be?

As for hope.

I do not think it is human nature to always have hope in life. We need to be constantly reminded of our hope, and what we put our hope in.  I do not know what the future holds for Lilli, or for any of our children.  But I remind myself of the hope I have in Jesus, and in His word. Because I put my belief, trust, and hope in Him, I have faith that He knows our future. And He has great plans for Lilli. And His plans were for Lilli to be born this way, here, now. To us. That I would be her mother. And she has a purpose for being here. She may be different than all of those kids dancing and singing up on that stage. But she has other gifts.

We just can’t see all of them yet.

Lilli kissing Chloe (who is wearing her Dorothy from the Wizard of Oz costume).

Tuesday, November 20, 2012

Fear of Restaurants and Being Spontaneous

Not long ago, we got a last minute invite from acquaintances to go out to dinner.

With all of our kids.

To an actual restaurant. Again let me say, with our kids. And not to McDonald's, either. To a Thai restaurant.

I told myself, hey, lots of people do it all the time. I've heard about it. I've seen it before. It is entirely possible for people take a bunch of kids out to eat and actually leave the building unscathed, with full bellies. We...just don't attempt to do that.

Our world became a lot smaller when Lilli was born.  Dates, vacations, road trips, eating out, shopping, all of those public activities became extremely hard. I became paranoid and began to avoid unnecessary, difficult outings. So we just got used to staying home a lot. We don't go out to eat, we stay home and cook. We tell ourselves that "our cooking is better than most restaurants anyway" and "eating out is expensive." Those reasons are valid (depending on the restaurant.)

But the biggest reason is because it is just too hard for it to be worth it.

So this was complicated. Jasen told me about the casual invite which had actually taken place on his voice mail. We had a short window of time to decide and call back. The person who asked really does not know us, and obviously does not know that we just do not "go out to dinner." Oh, and it was to a restaurant that we had never been to before. For an early dinner at 5:30. I was intimidated by the potential disaster I envisioned. (I can be a bit dramatic at times.) But without explaining why in detail, I will just say that it was one of those situations where we knew we had to go. Trust me, it was important.

Maybe one day, when we know these people a little better, we will look back and laugh at our preparations and paranoia. But the next few hours before dinner were devoted to avoiding a meltdown at the restaurant. We made food for the kids. We fed Lilli her dinner way early at 4:00, and gave the other two a huge snack. We grabbed Josh's lunchbox full of hotwheel cars and some crayons and markers for Chloe. But Lilli, well, I was not sure about her. I looked at the ipad and decided it was time. I needed to break down and actually BUY a movie for her from itunes. I guessed that there was not going to be free wi-fi for her to watch Elmo on Youtube at the restaurant (our best distracting activity), and I later found out I was right. I figured it couldn't be that hard to figure out how to put a movie on an ipad, I had been talking about doing it for months. I am so behind the times about some things. So I found one of her favorite Sesame Street movies, The End of Silliness. It was totally worth the $6.99. Of course, I didn't know it would take that long to download, with our slow internet connection. I watched the "downloading" line, paced, and packed drinks and diaper bags. It finished just in time.

While we drove to the restaurant, we made plans and instructed Chloe to use her manners. As we pulled in, Chloe informed us that she had to go to the potty again. I took Chloe and Lilli inside to the restroom together. That took about fifteen minutes. Then, we were READY.

At the table there were four of us adults, and seven children. The kids did awesome. Josh did not throw any silverware or yell loudly, "MA! MA!"" He sat in a highchair and played with his cars quietly the entire time. That was a small miracle. Chloe colored quietly with the children of the other family. Lilli sat next to me and watched her new movie on the ipad which was discreetly laying on my lap under the table. I didn't want it to be a distraction to the other kids, or to other people in the restaurant, so I put the sound on mute. Lilli did great sitting in a real chair, and only tried to get up a few times. I kept my arm around her and hugged her tight next to me with my left arm, all while I tried to eat my dinner with my right, balance the ipad on my lap, and maintain a coherent conversation with a person I hardly know. Jasen entertained Josh and held another conversation at the other end of the long table in the middle of the restaurant. I was nervous, but it went better than I could have imagined.

The best part of the dinner was when one of the people we were dining with commented, "So.. your kids are doing great! Are they always like this when you go out to eat?"

Jasen and I glanced at each other. I said, "Um, we don't...really, go...out to eat at restaurants."
They both looked from me to Jasen, who smiled sheepishly and shook his head, "No, we don't."

I feel like we are re-learning how to live life sometimes. We are learning how to do "normal" things in a different way. We cut back drastically on all of our activities years ago, because of Lilli's seizures, her behavior, her feeding issues, and finances (which were affected by having a child with special needs).

Now, we are at a point where we can try to go out spontaneously as a family once in awhile. And if we try it, we find sometimes that it actually does turn out OK. I don't know when we will attempt to go out to eat with the kids again. Probably not until someone else talks us into it.

And then I will download another itunes Sesame Street movie, take a deep breath, and we will try it all over again.

Thursday, November 8, 2012

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.

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?


Monday, August 27, 2012

Highlights of the Summer

Reflection is so sweet to me. 

Even though I am physically tired at the end of every crazy day, I never get mentally tired of thinking about where we were, and how far we have come. This is part of how I continue to find hope each day, by looking back at all God has done for us. He IS a big God. Nothing is impossible for Him.

We have made it through the first week of school already. Summer is officially "over" even though it is still too hot to go outside for very long. Well, maybe not for some people. I guess I should re-word that and say that in my opinion, it is still too hot  to go out and chase a two year old all over the yard for very long. 

This summer, I reminded myself that last summer, we still had no idea what Lilli was thinking. We did not know she was going to be able to read and communicate. She has reached so many goals and done so many new things since this time last year. We are so thankful.

Lilli continued to practice typing this summer, without the ipad. Lilli practiced typing on a touchscreen, the laptop keyboard, and flat pieces of paper with a keyboard printed on it. She worked with Leslie her teacher and Morgan her therapist all summer, to keep those skills she had at the end of the school year.

Lilli's communication with us is brief, because we don't have the ipad right now. But her attempts are encouraging, and motivate us to keep on going. She is a bright, curious, opinionated eight year old with words that are just bursting to get out. It's just that the slow typing has not caught up with the huge flow of thoughts and words inside of her, and it frustrates her. I feel like this summer, communicating with her was a little like trying to funnel a river through a garden hose - or maybe even a drinking straw. I pray that one day soon, the flood gates will open up.

Despite the challenges, we are still often able to figure out what Lilli wants. With some planning, she can tell us what she wants to buy at the mall. We can ask her what she wants for lunch. She can tell us that she has to use the restroom.  Last summer, before she could type, we went to Disneyworld and I panicked about how she would feel about going there. I could only guess what she might be thinking and feeling. The next time we go to Disneyworld, (oh yes, we WILL be going back one day!) I will just be able to ask her.

Here are some pictures from Lilli's summer. There are long stories behind some of them, but the stories will have to wait for "one day," when I have time to write them all down.
Therapy Riding 

Playing Crazy Eights with sister - Using a pool noodle with a slit cut in it to hold the cards (Thanks for the idea, some person on Pinterest!) her therapist helps her grab the cards and put them in the pile correctly, but Lilli does the choosing and playing.

Another summer of swimming with a tube - doing great with learning how to kick and move herself around the pool! 
New outfit she blew her birthday money on at the store "Justice." There is a story behind this outfit - how she picked it out, the whole scene. I almost did not let her get it because I am too thrifty, but it IS her money. She wears it all the time. (She'd better, for the ridiculous price. I might make her wear it all winter with a turtleneck underneath. You think I'm kidding.)
Lilli making her "I have something to say" gesture. (I imagine her to be saying, "Mom, I have a great sense of style. Now that I can pick out my own clothes, I am free from your thrifty, awful clothing choices! Hallelujah!" Well, not just yet dear. You blew all your birthday money on one outfit, remember? If you want more than one outfit to wear all year long, I still get to pick some cheap ones.)
Playing in the fountains. This is pretty close to heaven for my kids. 
Lilli with her ABA therapist, Morgan. Morgan was with us almost every day, all summer. We battled summer craziness together (all three kids, but mostly Josh causes the craziness) and she kept me sane. She's awesome.
Enjoying 4th of July fireworks together. (five year old Chloe put herself in Josh's stroller so she had a place to sit. Check out her outfit - all my kids have more style than I do. I just noticed, I'm wearing a black shirt in this picture like I said I always wear because I have no fashion sense. Well, I'm honest.)  This picture is much more significant that I have time to write about.  I got teary as Lilli watched the fireworks and laughed and smiled while sitting in my lap. So many small moments like this can get me.

We took several day trips to nearby towns and had a great time as a family. This was at an ice cream place. I shared my coconut ice cream with Lilli, and she loved it. Josh dropped his entire scoop of ice cream right off the cone onto the floor, and he didn't even cry. Jasen and I did, but Josh didn't notice.

 Some things that are NOT pictured:

-Lilli eating her first hamburger, ever in her life. (She liked it!) She has been trying all kinds of new-to-her foods, such as sloppy joes and steak sandwiches. This weekend she typed to me: "You like good food." I interpret this to mean that she likes to eat what I like to eat. She must think my cooking is pretty OK, and I take this as a huge compliment from an eight year old. Also I packed her many chicken salad and egg salad sandwiches this summer, and we were able to take a few day trips and have picnics. If this sounds weird that I am happy about what Lilli ATE this summer, it's because of how far she has come. Only a few years ago, road trips meant we were still stopping at convenience stores to heat up her pureed meals in a jar. I am so thankful to feed her a real sandwich out of a cooler on a roadtrip.This never gets old for me.

-Morgan, Leslie, and me reading "big girl" chapter books to Lilli all summer  - Nancy Drew, Beverly Cleary, and others. I'm reading "A Little Princess" to her right now, and Leslie is reading "Black Beauty" while Morgan reads her Nancy Drew mysteries. Again, I shake my head and think about how just last summer we were still putting out board books like "Brown Bear Brown Bear" and "Elmo's 123 Count with Me" for her.

We did not go anywhere for vacation this summer as a family. However, my sister blessed me with a long girls weekend away. I spent a few glorious, peaceful days in Florida with her and my niece Kelley. I read two books in four days, slept in a big bed all to myself (read: no kids coming in and waking me up and flopping around next to me all night), and OTHER people cooked meals for me and I didn't have to feed anyone else or do the dishes. It was the first time I have ever left all three kids for more than a few hours. Yes I said "ever." I don't know how to describe how much it meant to me.

I needed this small break so very much. I would love to take a long weekend away with my husband. But right now we do not have that luxury for several reasons.  Many parents who have small children can get to a point when they can leave their kids with someone for the night, or for the weekend. Jasen and I have not been able to do that yet.  But hopefully one day, we will.

It was a good summer.


Friday, August 10, 2012

The "Spelling Piano"

Here is my very first “slap it together” idea (see my last post) to share with the world: “The Spelling Piano.”

Purpose: motivate your kid to look at alphabet letters, spell words, find letters on a keyboard (both a piano keyboard and a computer keyboard)

Cost: cheap, if you have a toy piano. Or find one at a yard sale or thrift shop. Also something that is FREE. (You'll see later on in the post.) If you do not have alphabet stickers, you could use a permanent marker.  

How to do it: Put stickers on a toy piano. Click on a link for a free cool download.

Time required: depends on what your kids are doing at the time. If they are all asleep, this will take probably 5 minutes total. Maybe less. No mess, no clean up. Love it.

I would like to call it something more catchy, like “The Mystery Piano,” or “Spelling Music” but it’s not at all mysterious, and “spelling music” just makes me think “M-U-S-I-C.” So I guess I can’t slap together a good title, just a possible idea. Here is the idea I slapped together:

Piano with alphabet keyboard stickers.

I spent a buck on this poor pink piano at a yard sale, which has gotten little or no attention since I drug it home one early Saturday morning over a year ago. I thought my kids would love it. Lilli used to have a Little Tykes Light Up Piano, which she absolutely LOVED and played with for hours. Sadly, it broke and the company does not make it anymore, so I could not find a replacement. I saw this cute pink piano at a yard sale and brought it home for her as a substitute. But she would not even play with it. She didn’t even give it a chance. It does not light up. The demo songs were different. It just wasn’t the same. She plays our real piano often, and we can’t live without music. But this pink piano went into the pile of boring, I-don’t-want to-play-with-that toys.

About to have another yard sale myself, I held it for a moment before tossing it into the pile in the garage and tried to imagine what it could become if I breathed a little educational or therapeutic life into it. I counted the keys. Drat, only 22 white keys. Would be perfect if there were 26 for the letters of the alphabet. However, I tried it anyway. I took alphabet stickers and placed them on the keys. WXY and Z had to have a section of their own up on the sharps and flats, but that might be OK. Then I tried it out on the girls. We spelled out our names. We liked the way they sounded, hearing their names as a “song.” I spelled out “Mommy,” which had a realistic off-key, shrieky ending. 

Being a person who can read and play music, I paused for a minute to wonder if this would mess up my kids later on in life when I force them to take piano lessons and they tell their piano teacher, “This is a Z! My mommy told me that!”

But I quickly dismissed the idea because this piano does not focus on teaching a child that the keys have letter names. It is more about finding the letters of the alphabet and tricking, I mean, encouraging kids to spell out words, with added musical fun.

You, dear reader, could make this idea so much better, especially if you happen to have a piano with 26 white keys. Or maybe you might like to mix it up and include a bunch of the black (or purple) keys. The point of the spelling piano is to get your child to touch letters, press keys, and spell words while listening to the notes and “songs” the words make.  This would be most motivating to the child that loves music, loves the sound of the piano, and loves the feeling of pressing the keys and creating a song. It would NOT be good for a child that was currently taking piano lessons or any other beginning music lessons, because it would mess them up big time.

The best thing about this piano to me was that it was a stepping stone to the next, much much better idea. So slapping something together does have its benefits.

I wondered if some other much-smarter-than-me mom out there had already come up with this idea ages ago, so I google-imaged it. I did not find a beat up, yard sale toy piano with alphabet stickers on it, but I DID find something totally cool that I am excited to share with you: a free program that turns your computer keyboard into a piano while you type! It is called "Baby Computer Piano." It is the same idea. Each key on your computer keyboard is turned into a piano note. It sounds like a real piano! It is even better than the yard sale piano, but I’m not throwing the toy piano in the yard sale yet. There is still something to be said for using a toy that does not involve “screen-time.”

I have already downloaded the “Baby Piano” program and played with it, and my computer has not crashed. I love it, my kids love it, and the best part was it was FREE. I guess I should put a disclaimer out there, that I am usually wary of downloading free programs in the event that it has a scary file-eating virus hidden inside. But I am not that computer virus savvy, so some other smarter-than-me mom out there can figure that out too. Days later, my computer is fine, and the program is still fun.Here is a screen shot of it:

Screen Shot of Baby Piano program. I typed "HELLO" but it is hard to see in green.

While you “play” the keyboard, the letters come up on the screen. They are green and not that easy to see, so that is one part I would change if I could. Also every single key has a note, and when you push the space bar the letter “N” comes up. It makes it hard to type more than one word or a short sentence. Otherwise, it’s super, and it gets kids motivated to look at the keyboard and press keys. If you want to play the notes in order, you have to find them on the keyboard - a great way to teach kids the typing keyboard.

You can play more than one note at a time, even "chords." I think this would be a great program for people who are just starting out with trying to get a child to learn how to type, to familiarize them with the keyboard while making it fun and motivating. For us personally, it is perfect because we are always looking for ways to encourage Lilli to type.

This program has the added bonus that you can apparently have your child sit on your lap and “play” the piano, while you continue to surf the web at the same time. I personally do not enjoy trying to do anything on the computer with someone in my lap, but maybe that’s because all of my kids weight more than 35 pounds and squirm too much.

Here is the link for the free Baby Piano download:

So what do you think?  

Monday, August 6, 2012

Debut of “Sloppy, Slap-it-Together”

I have secretly been harboring feelings of jealousy and distain. Shame on me.

You may be surprised at the subject of my feelings, and I will confess them now to the public.

For many months I have perused the blogger world, and the world of Pinterest which links to the blogger world.

I have been privately and wrongfully scoffing at all the many hundreds of crafty bloggers, who concoct impressive projects with effortless ease, snap pictures of every step, and cheerfully bubble on about how excited they are to find a new object to mod podge. I have cracked up at imagining how the blogging cook must stop, wash the hamburger off of her hands, take a picture, and then dive into the next step, only to stop and wash her hands all over again for the sake of digitally capturing every painstaking addition of an ingredient.

However, I am a hypocrite. Because as I crack up and scoff, I am also taking notes. I am bookmarking, favoriting, and pinning. I have tried new recipes and pinned ideas for my kids. I bought mod podge. I confess that I even made a wreath for my front door from the inspiration of Pinterest. (But this was only after I realized that we were the only, I mean no exaggerating, ONLY house on the entire street - I checked - with a plain, empty, dirty-with-smudges, front door. Not that I care. Well, obviously I do because we have a wreath now. Anyway I digress.)

I realize that this is the internet we are talking about here, which is NOT REAL LIFE most of the time. I know that the blogging cook may very well be screaming bloody murder at her kids who are beating each other to death with train tracks in the next room while she is snapping those seemingly peaceful and delicious photos. There may be a few genuinely blissful, silent, peaceful, crafty bloggers, but in general I prefer to imagine them with glue in their hair and paint on their nose, quickly pecking out their blogs late at night with a sink full of dishes, toys all over the floor, and a toddler collapsed next to them on the couch. Because to me, that is real life. Do you imagine me sipping my coffee with classical music playing in my serene, neat-as-a-pin office while blogging? I don't have an office. I have a laptop propped up on a baking rack on a second hand table in the corner of my kitchen, surrounded by piles of books, crumpled papers and an overflowing shredder. And there are lots of dishes in my sink right now. The classical music part might be stretched to truth if you count a Baby Einstein movie playing in the next room, where my kids are beating each other with train tracks. I intervene every few sentences or so. It takes me days, weeks, sometimes months to finish a blog post. Time is warped on the internet. And so it must be with crafters, I assume. Unless they have a cleaning lady, nanny, and secretary, it must take these crafty women several messy days or weeks to complete a project as well.

Therefore, this is my public apology to anyone who blogs about anything that involves creating and making. I am sorry for judging you as being perfect. Because I was wrong, I know this now. You are real people. You just choose to focus on and publicly blog about your projects, not the messy parts of your life. Just because you do not write about it doesn't mean it's not happening. You have the right to your privacy. And that is fine, I am OK with that. I also apologize to anyone who thinks I am amazing, organized, super-peppy and creative, and just an all around blissfully delighted crafter. Sorry to let you down, I'm not. That just made me laugh to even type out such a ludicrous idea.

So begins the theme for the next few posts I have planned. If I were to create a new blog, I might call it: "Sloppy Mom Tries to Slap Together Something and Call it a Craft." Now that would be a fun blog to pin, wouldn't it?

I have ideas. I want to share them, because maybe another unorganized mom or dad out there might see an idea and think, hey, if that sloppy mom can slap that together to help their kid while her house turns into a disaster area, maybe I can do it too!

Yes, dear, you can. And you also might be so much better at it than I; simultaneously stroking the head of your sweet child with endless patience as she reads a book to herself while you mod podge to Mozart.

Most of my ideas are cheap – sorry, I have to get the lingo down here – I mean "frugal" ways to help a child with special needs. Long ago I became fed up with the astronomical prices in the special needs catalog full of unattainable gadgets. I would thumb through the pages with longing, wondering how our lives could be changed if only we could get insurance to pay for some cool "adapted" button or switch. One day I was lamenting to someone about how we could not afford a hundred dollar button that happens to have a similar name to a popular fast food hamburger. If only we could have a button like that, Lilli could learn to push it when she wanted our attention instead of crying. We could record messages on it. We could teach her to use "words" to communicate, I complained.

"It's like that button at Staples, right? The 'Easy Button?' Maybe you could get one of those and rig it to say something different," my friend commented. And that was where it all began for me. We now have "Potty Buttons" all over the house, and I have given several away to friends with non verbal kids. Most parents of kids with special needs cannot afford the expensive hamburger-named button that is not covered by insurance. I am still on a mission to find new ways to make cheap "talking buttons." Expect a post on that one of these days.

After scouring the east coast for small recordable picture frames, I also began to look at yard sales for "therapy toys." I went overboard, buying so many toys to use with Lilli that we did not have room for them all. But those yard sale toys taught Lilli amazing skills. I would love to share about that. This has become a fun little hobby, a mini passion of mine, to find frugal ways to help Lilli. I hope that someone else might benefit from seeing these ideas, and maybe it will help some other child with special needs.

My first post will be about my latest "slap it together" idea: The Spelling Piano. Look for it soon!