Tuesday, September 27, 2011

Teaching Lilli to Type

It takes a little time sometimes
To get your feet back on the ground
It takes a little time sometimes
To get the Titanic turned back around
It takes a little time sometimes
But baby you're not going down
It takes more than you've got right now
Give it, give it time
(Amy Grant & Wayne Kirkpatrick)

I heard this song on the radio one day when Lilli was about four years old. This was one of those "turning point – moments" in my life. At that time, I had been so discouraged about her lack of progress in therapy. I had such high hopes for her to learn to do things, but I felt like people thought we were crazy to think she would ever run, talk, or learn to do things for herself. Plus, we kept taking steps backward every time she had a bad seizure or got really sick. I pulled in the driveway and sat there, with tears as I listened to the lyrics. I remember thinking that it was a sweet message from God, to have hope and faith.

This is going to be my new theme song of Lilli's life, I thought. It takes a little time. Give it time.

In hindsight I can now see that Lilli does learn many things, but quite simply, it takes much longer than we would expect a typical child to take. It takes a lot of faith and encouragement to keep going. For example, she did not start to run, really RUN until after we moved here when she was five. You should see her now. I can hardly catch her. I wish every parent of a young child with developmental delays would be encouraged that even though it "takes a little time sometimes," you just have to give it time and keep trying. 

Speaking of something we are spending time on…I am so excited to share about how Lilli is learning to type. We are just at the beginning of this chapter. I have many hopes in posting this. One hope is that everyone will cheer Lilli on, and pray earnestly for her and for all of us who are working with her, as she learns to type, spell, read, and hopefully communicate in this way. We need prayer. This is a long road.

Another hope is that teachers, therapists, or parents of kids with special needs might see this and be inspired to try it with a child they know.

Finally, I hope that every person who reads this and views these videos will see faith in action. "Faith is being sure of what we hope for and certain of what we do not see." I absolutely believe that Lilli is going to be able to communicate clearly with us someday. I am constantly praying that she will speak. But perhaps this will be a way she can "speak," through writing. We believe God has put all of these things in place for us to do this. And now, we just do it, and wait. We have the teacher, the ABA therapist, the ipad. We have no guarantees. There is no "expert" telling us that if we do this a certain way, it will definitely be a success. We only have hope and faith that this will work, and that all of our many hours of hard work will not be in vain.

As for the typing…there was no set "typing program." In an earlier post, I described how I simply viewed a Youtube video, and was inspired to start teaching Lilli how to type. Our "Lilli Typing Program" began with my research on kid-friendly keyboards.

First, Lilli's totally awesome public school provided her a touch screen monitor that we hooked up to our laptop. She learned how to do the website with the touch screen. That helped her practice using her pointer finger and aim at specific parts of the screen. Before that, she had been randomly hitting the screen with no real purpose. Then, we bought a Leap Frog Click Start. We worked on typing her name and short words like "Go." Then the school purchased an ipad for her. (BTW, this school is not overflowing with money, they just DO what they think kids really need). She learned quickly to do the Starfall app on the ipad. We found the app called "Typing Bee." The school bought the app "Proloquo2Go" for her to use. All of these things combined have helped us get to the point where we are now. Anyone can think of what a child likes, and use it to help them learn. That is all we've done. We capitalize on things that motivate Lilli, and use them to teach her new things.

I made alphabet cards with Velcro to stick on a board. Lilli loves the sound of Velcro; it is motivating to her. She pays attention to the letter cards. She tolerates the hand over hand. She seems very interested in the whole process. The ABA therapist and the homebound teacher are both working on typing. They do it in a different, but complimentary way. The ABA therapist is working on the same two words over and over, to teach Lilli to do it independently. We use special cling stickers I found online to highlight the letters on the keyboard. Lilli is only typing two words with the ABA therapist right now; "bus" and "star." They watch a Youtube clip of "Wheels on the Bus" and "Twinkle Twinkle Little Star" as motivators. They do this many times every day. The goal is to get Lilli to type these two words on her own. Here is a clip of Lilli working with the ABA therapist on typing:

The teacher is helping Lilli to type many words each day. She has a set list that they type each day in the same order, as they watch different Youtube movies. Lilli likes Baby Einstein movies, so the teacher chooses objects shown in the movie clips to type about. The teacher does not use the keyboard stickers because she helps Lilli type so many different words. She is working more on reading, spelling, and word recognition. This also helps Lilli get familiar with where letters are on the keyboard. Here is a clip of Lilli working on typing with the teacher:

We have been working on typing for six months. If you count Lilli learning to use the touchscreen before that, it's been a few years. Someone might watch this video or read this post and think, "That poor mom is in denial. Six months and they are still holding her hand and making that girl touch each letter! That is not typing! They are doing it FOR her!" Well, let me shake my head and tell that person that we have spent years teaching Lilli to do various things. Six months is nothing. Bring on the hard work, because we are ALL IN. We are doing this. And I cannot WAIT to post a video of Lilli typing a word by herself someday.

Wednesday, September 21, 2011

Lilli Masters the Stairs

I am not standing at the bottom of the staircase, watching. Not yet. I am still walking backwards, down the stairs in front of Lilli so I can catch her in case she falls. But she is definitely doing it on her own. Another victory for Lilli, after over three years of hard work. And another answer to prayer.

It's been awhile since I have been able to post. Two days after my last post about seizures, Lilli had the worst seizure she has had in almost a year. It was a long one at 5 am, and we called 911. She had trouble breathing and it was incredibly scary, but now we officially have oxygen on hand in case it happens again. After the seizure, I felt like we took a few steps back and had to catch back up. It has been a challenging month in several ways for us. But we can always find something to be thankful for. After looking at pictures of flood damage near some dear friends and family in Bloomsburg, PA, I could not possibly complain. We are very blessed.

The video posted here is of Lilli walking down the stairs in our house to the finished basement. This captures a huge milestone for Lilli because she has never walked down an entire flight of stairs by herself before. This is the first week ever in her life of holding onto the railing and going down the steps with no help. She has put in countless hours of physical therapy working on this skill. My father in law, Terry C., made her a special set of wooden therapy steps that we had in our living room in Virginia for many months. It took up most of the room, but the results were worth the inconvenience of stepping around it every day. Many people, including therapists, family members, and friends, have spent much time and effort in teaching Lilli to walk up and down stairs. I used to stand on one side of the therapy steps with a portable DVD player to coax her to walk up the other side. My husband Jasen gets the most credit of all. He insisted on walking her up and down the steps every day several times, for exercise and practice. Many of those sessions were tough, with Lilli crying and whining the entire time.

When Lilli was younger I read as many books about kids with cerebral palsy as I could find. One of them was a book called "Karen." Karen had cerebral palsy, and hated walking up and down stairs as a young child. It was difficult and scary for her. The author describes how the mother would throw Karen's favorite doll to the bottom of the steps and say, "If you want it, you have to go down the steps to get it." Then when she got to the bottom, the mom would throw the doll back up to the top to make her go back up. At the time, I thought it was cruel. But now, years later, after our own experience with Lilli, I understand. Sometimes parents have to use unconventional methods to help their children with special needs overcome their fears and difficulties. We personally have used many odd objects as incentives to attempt the steps. Keys, bottles of water, cheesepuffs, and movies on the portable DVD player are a few. Outsiders may not understand. But for us, it worked. I hope that by posting this, some of those people who helped Lilli along the way will get a chance to see the finished work as a result of all of our combined efforts. I also hope that anyone who is working hard with a child with special needs on any skill is encouraged by this story. It may seem small to some, but it is a huge deal to us. Believe me, coming from someone who ruptured a disk from carrying a three year old everywhere, it is a big deal to have Lilli walk by herself, and then walk down steps by herself.

Little things are a big deal around here every single day. We take so much for granted. But Lilli helps remind us each day to not take anything for granted in life. Especially the "little" things.

Like walking down the steps.

P.S. I must add that I realize she does not match. She is wearing "make-shift pjs." (Christmas idea alert! Size 7!) The only fashionista around here is Chloe, the rest of us obviously don't think about it much.

Thursday, September 1, 2011

While Waiting for a Seizure

As I turned the calendar page to September tonight, I yelled out to Jasen, "No seizures at all in August!" I took out a blue marker and wrote "No seizures" on Lilli's seizure calendar that I keep on the fridge next to our regular calendar. I keep track of them for many reasons. It is important information when we are trying to figure out what could be setting them off or if we need to make changes in medicine, etc.
I am rejoicing because it has been over a year since she has gone this long without having a seizure. She has had some months with only a few, and other months with several each week. I thought about the odd practice we have of "waiting" for the next seizure. It is difficult to explain. Lilli has had them all of her life, and we always have to be prepared. We go by patterns and signs for when we think we should be "ready" for her to have a seizure. Some people can tell when they are going to have one. Lilli might be able to tell but she can't communicate that. We are always going on hunches and clues, like how she is acting, or things that happened that day that might bring on a seizure. Maybe it is a little like predicting the weather without all the fancy meteorology equipment.
One night in May I was "waiting for a seizure" and I felt like writing about it. I took a flashlight and a notebook, and wrote as I lay next to Lilli, who was sleeping, in the dark. This is what I wrote.
May 15, 2011
It is a Sunday night. Lilli has had a seizure every Sunday for the past five Sundays in a row. Jasen is out at the kitchen table doing schoolwork. He got Lilli to sleep, but now I am watching her in case she has a seizure. She sleeps in our bedroom, hooked up to a machine called a pulse oximeter to monitor changes in her pulse and oxygen saturation. Sometimes the alarm goes off if there are changes and she is starting to have a seizure. But sometimes… it doesn't. So although it is helpful, it is not as good as old-fashioned mom and dad. We listen to hear the sound of her smacking her lips. That is how we know a seizure is starting. This sound does wake us up every time. We are well trained, after seven years. We are also light sleepers.
When Lilli has a seizure, we fly into action. The light goes on, one of us runs for the Diastat (emergency medication) and the phone in case we need to call 911. I time the seizure while we get the medicine ready. I have not had to call 911 since December, a 10 minute seizure. There was a time years ago when the seizures would not stop at all. We have been to the emergency room a lot with Lilli over the past seven years.
A lot.
Fortunately they have been stopping after several minutes for the past few months. Lilli has most of her seizures while she is sleeping. It makes our nights, well, not very restful, most of the time.
The chances of her having one tonight are pretty high, for several reasons. Even though it is late and I'm lying here in the dark near her, I cannot sleep. I think of all the things I could be doing right now instead of waiting for something to happen that might not happen. Re-folding all the laundry that Josh threw on the living room floor right before bedtime. Reading one of the many books I have stacked by my bedside that I would love to read but never get to. Is this healthy? I wonder. I already KNOW it's not "normal." But don't get me started on that word. Is this what firefighters or EMS feel like when they are on call? Waiting. Waiting for something bad that might happen, to happen. And making sure to be ready, in case it does.
One time I asked my husband if he thought it was accurate to describe waiting for her seizures like this: it's like sitting at the dinner table eating with your family, and you know that someone is going to choke on their food in the next twenty minutes. You sit there and try to enjoy your food, but really you can't because you are visualizing the Heimlich Maneuver in your mind, and making sure your chair is in a good position so you can get there fast when you leap up to help. You concentrate on watching your loved one chew food and swallow; relieved after each bite goes down. You can't pay full attention to the other family members at the table because you have to be ready for the second when the choking occurs. And you feel like this every time you have a meal.
When I told this scenario to Jasen, he slowly nodded, and said, "Yeah, actually, that is kind of what it feels like."
I look at Josh on the video baby monitor and see that he has no blanket. I go out into the kitchen quickly to ask Jasen something, then sneak into Josh and Chloe's room to cover up Josh. When I tip toe back into our room, I hear a sound and stop dead in my tracks. For a second I think it is Lilli smacking her lips, having a seizure. I stop breathing and listen with alarm. Then I realize: it's only the clock ticking in our bathroom. I just shake my head to myself, and climb back into bed for yet another long night.