Thursday, January 28, 2016

"I want to watch..."

This is what Lu looked like yesterday after she told me with her Tobii that she wanted to watch Despicable Me 2. She was so tickled to be watching the movie of her choice. I have been modeling in her Tobii the sentence, "I want to watch..." And then she fills in the blank. Because I know that eventually she will create that sentence on her own, instead of just essentially shouting out the names of movies and tv shows that she wants to watch. 

The other day she told me that what was happening (which was that she was waiting for me to give her a snack and was watching Peter Rabbit) was "boring".  Being bored must be a feeling she is exploring lately because she also told Chad a month or so ago that she was "bored" when he was reading to her one night before supper. 

A week or two ago Lu and I were planning a small shopping trip. I read the list of things I needed and then I asked her if there was anything she wanted me to add. This is what she said:

That night for supper I made grilled cheese sandwiches with salami in them, and she was in love! We had blueberry pancakes the following Sunday, and we haven't had sloppy joes or lasagna yet, but we will.

Lucy's buddies Miles, Chase, and Isaac stopped by for a quick surprise visit after Christmas to meet Olive, her new kitty. She loves those boys, but look what she said when they left:

She often asks where her Dad is during the day when he's at work or makes this suggestion:

I asked her if she missed him and she nodded "yes". She followed up in her book by saying, "not see him". 

And during speech the other day, she and her therapist, Roxann, we're making a story about a picture of Lucy dressed up for Halloween. They had started the story the day before, so Roxann brought a picture of herself dressed up like Tinkerbell a few years ago to show it to Lu and talk a little bit about it too. In Lucy's picture she is with her dad and her Poppa, so as part of the story Roxann asked her what her Poppa thought about her costume, and Lucy said, "everyone, silly, yours" obviously referring to Roxann dressed like Tink, since she was a grown up! It was very funny!

Just like any other five year old, Lucy makes requests, shares her feelings, makes observations, expresses her opinions, and likes to watch the same movie over and over again, and can tell me she wants to do so. I have a pretty strong belief that because she can do these things, and has control over it, is why she is generally a happy little girl. She certainly can have bad days as we all do, and sometimes we go through periods where certain parts of the day incite an inexplicable unhappiness in her, but in general, I feel like in spite of all of the parts of her life that she has no control over, and in spite of her physical limitations, she is content, happy, and thriving.

I'm just so grateful for the technology of eye gaze, and the creation of the PODD. I know this isn't new information, and that I'm like a broken record about it. But I often wonder how different Lucy would be without her ever-increasing ability to communicate with us. Fortunately, we will never know. 

Saturday, January 2, 2016


I'm not a big fan of Christmas, as I have mentioned before. I am a little Grinchey, mainly because of the materialistic aspect, which I try to minimize as much as possible by making gifts and just trying to not focus so much on all the "stuff". We don't do Santa either. That's not to say I don't love to give people gifts, because I do. But I love to give gifts that really make a person happy and that brings a genuine smile to their face, not just a gift to fill the "amount of stuff you give someone" quota. And really, the smiles that matter most to both Chad and I obviously belong to Lu. 

Lucy May isn't a gal that shows joy for just any old toy. I don't mean that there aren't many things that she likes and enjoys, but I really want to make her face light up with something that she is really going to have fun with. She also can't just play with any old toy that comes her way since she can't use her hands on her own, so it's a very tricky process thinking up things that she will love, and be able to enjoy. I have read a lot of parents' posts on Facebook and in blogs expressing very sad feelings about choosing gifts for their daughters because of the trickiness, but I seldom feel sad about it. I know what Lucy loves, and I don't mind the challenge of figuring out how she can use things. So, I wanted to share her smiles over the past few weeks that are a direct result of Chad and I always thinking outside the box and figuring out what will make joy shine out of her eyes.

I had been planning gifts for quite some time when Chad realized one day that we had not actually asked Lu what she wanted as a Christmas gift! I was mortified with ourselves! We ask her dozens of things everyday, but we had not asked her this question which certainly is mega important to any five year old. The next day as we talked about what she might want, she said on her Tobii, after I started her out with the first three words:

 Well, I said we wouldn't be doing any construction to build a fireplace, and Chad was adamant that we are currently done with fish, and she didn't want to elaborate on what she meant by "eye doctor", so I decided to work on the cat request. This was not a new request, and we had a sweetie of an outside cat who had mostly lived inside with us, but had spent the past couple of years outside, not for any reason other than she was afraid of one of our past dogs. But...she loves Finn and Finn loves her, so I just had to convince Chad. It took a few days, but he eventually relented. We got the kitty, Olive, all cleaned up at the groomer's, and she joined us inside:

This smile was from a race car track that just needs a push on a lever to make it go:

She had a lot of fun enjoying it with her cousins on New Year's Day.  I would say that the race track produced the biggest smiles, besides the little "Digibirds" that you can see hanging on her Tobii stand. I showed them to her MeeMee and Poppa after seeing them in the store, and they got her two and she loves them. I am going to make a button on her Tobii that will whistle when she activates it, and then she can make the birds sing on her own. This is how she felt when she first saw them:

She just smiled a lot in general over the weeks of hustle and bustle, and visiting, and eating, and I am glad she enjoyed herself so much. In preparation for the holiday, Lu used these fabulous, amazing new hand grippies her OT bought for her to try out to bake some chocolate cinnamon bread that we gave away as gifts:
 They are called "EaZyhold" and can be bought on their website. They can be used to hold so many, many different things! Like a spoon for stirring:
Look at that concentration!

Or holding different sized markers to color! Lu colored this which I then shrunk and made copies of to put on the front of our homemade cards, that I am still trying to get in the mail!

I think people make the holidays as stressful or not stressful as they want them to be. Each year I wrack my brain making a plan for how to eliminate more and more stress from all of the festivities. But with all of the going places we are always worrying about accessibility, and times things are happening in relation to Lucy's rigid daily schedule. Plus, just sometimes places and activities can be too much for her and she gets overwhelmed which can present itself in different ways. 

But, we do our best to pick and choose what is worth the effort, and what just isn't. This year one thing that I knew would be absolutely worth the effort was going to see Lucy's buddies, Miles, Chase, and Isaac in their Christmas show at their school. And I was right, she smiled the whole time, even though we were past her lunch time. After the show we had lunch at Burger King with Erin, the boys' mom and my old friend, and Lu enthusiastically ate almost an entire [pureed] cheeseburger. It was a great day. Full of smiles, and while it was exhausting, it was so totally worth it!

So anyway, I hope everyone had a very happy holiday season, whatever holiday you may celebrate. I've already started planning ways to continue my goal of simplifying the holidays for next year: minimal stress, maximum smiles on Lucy's face, that's my goal! I hope everyone also has a healthy and happy New Year!