Tuesday, November 15, 2011

Looking Back to find Hope

One thing I have done to encourage myself and find hope for the future is to look back and see how far we have come. I often say to people who are getting to know Lilli, "You should have seen her this time last year," or "She has come such a long way." It's different than my other two children, who I expect to continually make progress like any typical kid. With Lilli, it is a surprise, and sometimes an unexpected miracle. I have to remind people that the doctors did tell us she would never walk, or talk.

When I looked back over the last four, busy weeks since I posted, I realized we have done a lot this fall. It made me think of what things were like last fall.

This time last year, Lilli was using her PECS books with Velcro pictures, and going to public school. We were on the waiting list for ABA therapy. We had no way of knowing how much Lilli knew or understood about letters or reading. She could not do any computer activities by herself.

Now, she is learning at home with an ipad provided by the school, and has an ABA therapist and a homebound teacher to teach her. She can do Starfall by herself, and now does the "Elmo Loves ABCs" app by herself. She is showing us daily that she knows her letters through the ipad. The Elmo app has a "letter quiz" where Lilli has to touch the letter Elmo says. She is getting them correct and we are ecstatic about it! Lilli's progress with her ipad has been amazing. At least once a day I think the same thought: "I wish I could write about this." Well, at least I don't have writer's block. It is a different kind of writer's block. I am literally blocked from writing on my computer by the bodies of my children.

I thought I would show a few pictures of what our past few weeks have been like.

Lilli is typing the word "bird" almost by herself!

Here is Lilli typing the word "bird" on her ipad with her teacher, Leslie. In the past few weeks, two major things happened. The first thing was that both the teacher and the therapist told me they felt like Lilli was really starting to lead their hands to the right letters when typing certain words. We labeled things around the house and began to have Lilli type about everything. Sometimes she seemed to already know how to spell the words, and led our hands to some of the letters.

The second thing that happened as a result of the first, was the idea that we "wean" Lilli off of holding our fingers while typing. It was Morgan, the ABA therapist's, idea that we have Lilli hold something in her hand while typing. We would hold onto the object too, but gradually fade away from guiding Lilli's hand. Lilli has a lot of "moral support" needs going on. She thinks she needs help more than she actually does in some cases. In this picture Lilli is holding a rubber stick (we used to use it for a handle for utensils when feeding her) and the teacher is only touching the bottom with her finger. Lilli can see out of the corner of her eye that the teacher's hand and arm are there. But really, she is typing the letters correctly on her own. When she is ready, we will start to take our fingers off the end of the "stick." Is it tricking her? Kind of. But in a good way!

This October we went as a family to visit a farm with a pumpkin patch. We went to the same place last October. I looked to see if I had taken pictures last year, but I could not find any. I probably did not even take any pictures because it was such a bummer of an experience last year. Jasen says I can be too negative about things sometimes. But honestly all I remember about the trip to the pumpkin patch last year was Lilli standing in the middle of it, screaming and sobbing, while tons of people around us stared, and we tried to gently hurry-up our little Chloe. Chloe was thrilled about picking her very own pumpkin, and took her time in choosing the perfect one. I was completely stressed out by Lilli's crying. Sometimes she has this guttural, angry, growly cry when she is overwhelmed. It was very obvious she absolutely hated the whole pumpkin patch experience. It's almost funny now, to think of how happy and naïve we were as we piled in the car to go to the pumpkin patch for the very first time as a family. It was not the fun/togetherness-experience we had imagined. I don't think Chloe really noticed too much. She was so happy about that pumpkin. But Jasen and I drove home in silence, depressed that Lilli could not handle what we thought would be a simple, fun outing.

This year, we were more prepared. Physically, and mentally. Would it have been easier to just to split up and have one of us stay home with Lilli? Sure. But we do want to try to do things as a family. It is usually a gamble for how it will go. This time, my niece Kelley went with us, and it reminded me that it is always good to have one adult per kid when you go on a family outing. Once again, Lilli got upset. It can be an overwhelming place, with all the people, noise, and busy activity. But we handled it differently than we did last year. My husband took Lilli on a walk out by the cornfield, away from all the noise and kids. When we tried to take her to the pumpkin patch, she got stressed again, so he took her somewhere else while Chloe chose her pumpkin. My niece, Kelley, helped me with Josh and Chloe. Meanwhile Jasen found the perfect way to calm Lilli – the water falling from the kids' gem mine activity. The pictures I got were priceless: Jasen taking a calm walk with Lilli, Chloe and Josh playing, Chloe having a meltdown because we told her it was time to go next to Lilli happily playing with the falling water.
Lilli takes a calm walk with Daddy away from all the people and noise.
Chloe: "I don't want to go!" Lilli is thinking: "I could stay here all day and play with this water."

We didn't get the family picture last improvement this year!
"Cousin Kelley" (Chloe calls her that), Josh and Chloe

Trick or treating was…just OK. As I took pictures of the kids on the couch before we left the house, we noticed Lilli did not look well. I snapped a few pictures and said, "Jasen, she looks like she feels sick." She started to have a seizure. We did eventually go out trick or treating and pushed Lilli in her stroller, but she did not seem to enjoy it like she did last year. We had to split up and Jasen took Lilli back home while I took the other two around. Halloween is just not the event for Lilli. She can't even eat the candy, and does not enjoy dressing up…so, it's almost like torture. We look at it as a chance to take a family walk around the neighborhood (in the dark). However, this year she did do something that impressed us. Jasen pulled her out of the stroller and helped her walk up the steps to a lot of the houses and greet the people at their door. At one house, he stood behind her and said, "Lilli, say 'Trick or treat!" We know she can't say it, but we still prompt her like we prompt Josh, who is also learning to communicate. Lilli took her hand and made a sign. Jasen looked at me and said, "What does that mean?" I smiled and said, "I think that is the sign for 'stairs'." Well, she had just walked up stairs, and she doesn't know how to sign "trick or treat," so we thought that was great. Plus, she probably just wanted to walk back down them and leave since she wasn't into the whole activity. Hey, that's progress! She didn't sign last year.
Lion, Rapunzel, and Mulan.

What I continue to learn as Lilli's mom is that we can do things together as a family, but we just have to do things a little differently to help it be enjoyable. Some people say you should let the past go and move on. But I have to keep looking back, because it gives me incredible hope for what is to come. This is not all there is. There will be much more, and I look forward to the surprises and miracles in the future.

No comments:

Post a Comment