Down and Up and All Around

I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!

PRC and how it changed our life

It has been a few months since Claire got her voice and I think it is fair to say that it pretty much has changed our life. I have had contact with a few different families who are looking into a communication device for their daughter so I thought I would blog about why PRC has been as amazing as it has been. At the root of it all is one phase that Claire says around people that are new to her "This is my talker, it helps me speak." Prentke Romich (PRC) was first recommended to me by somebody that I considered to be an adversary. Claire was 3 and had just started in the county autism preschool. The process of getting there had been comprised of one ridiculous evaluation after another, so I assumed that when the person came to do the assistive tech evaluation, she too would completely miss Claire. I told the lady that we were looking into MyTobi as there was an eye gaze controlled computer that was coming out that Claire could use as a communication device. While the lady didn't completely get Claire, it turns out that she is some sort of genius with a PhD that teaches about this stuff at the college level. She gave me her card and really encouraged me to look into PRC. At the time PRC didn't have a device that used eye gaze and I knew that it was all about access. A few short weeks after that PRC announced that they were releasing the EcoPoint to go with the Eco14. I still had no idea what this meant, everyone in the rett world (which is pretty much the whole universe from our perspective) was going with Dynavox and MyTobi. The Dynavox rep brought their eyegaze system and Claire was amused, but barely. Next in line was the MyTobi rep. Claire did great for the one hour that she had to play with it. There was a Christmas tree and she popped the ornaments. She also enjoyed an activity that had animals and the sounds that they made. Third up to bat was PRC, I still had no idea what the difference was between all of these, I was learning as we went. I was absolutely blown away by Claire's response to the Eco. It was language, not games and she loved it! I have never had a doubt in my mind that Claire has had a language problem, she just couldn't talk because Rett screwed up her body. The Eco was the perfect solution to it. It does just that, it helps her talk. PRC uses this really cool language system called Unity. I have to admit it was weird at first. The icon for "want" is that of a jailbird in black and white stripes looking at a wanted posted. It was much more abstract for me than it was for Claire. The coolest part about unity is how it is organized. It really capitalizes on motor planning. So once Claire gets the motor pattern for something, it is pretty easy for her to get to. It has given her access to so many weird things that I didn't expect her to say. Like calling her sister dumb or announcing that her dad was leaving late when the phone rang during dinner. Having access to language, to whatever she wants to say and not just pages about topics that I think she would enjoy has really helped her to grow into the 5 year old that she is today. She is really normal. Sure she gets mad as hell because she hates the limitations of her body sometimes. But for the most part, the talker has helped her to deal with that and say what upsets her. I want to really encourage anyone out there who is looking into a talker with or without eyegaze to look into PRC and their products. They have had nothing short of absolutely fabulous tech support as I have had my programming challenges and a few quirks. Lastly, from a parent perspective, this is super low maintenance. If the best option for her would have been high maintenance, we would have gone with it if. But it is so nice that because it is a language system, there is really very little programming. Sure we put pictures of our family in it and she has all of her music on a songs page. But she really uses it as her talker, sometimes a keyboard if we want to type something she can do that to. It is not a game, although it has go fish, uno and a bunch of other fun stuff on there. It is her voice, her access to spoken language and it has changed our life, to say we are grateful for it seems like and understatement, but that is the best I can come up with.

I'm surprised why?

I think it is safe to say that from age 3 to 4 pretty much all I did was advocate for Claire. Not just for services, but educating friends and family as well. I feel like all I did was try to explain to the world that there was an amazing and intelligent girl trapped in that body. Yesterday afternoon Claire was sitting at the table with her computer and Jessi when I was bringing up everything from my truck. The last thing that I came through the door with was a little potted plant that Claire grew for me at school as a mother's day gift. I told Jessi that it was my gift from Claire and what did Claire say? Without hesitation she went to the page that had "make" on it and said it and looked right at me. I told her how much I love it when she makes things for me, I was so excited that in that moment she had such purposeful communication. Why am I so surprised? Didn't I just tell the entire world that she is wonderful and smart? I am just loving it as she continues to say amazing things. Since she is using her device so appropriately I think that I will now use it to my advantage. Mother's day is coming and pretty much it goes without saying that Jared can't read my mind and so I will be disappointed on some level. So I am going to program Claire's computer with some messages about what I want for the big day. Then I will show them to Claire so she can say them to her dad on Saturday. Isn't that what people do with their normal kids? Tell them key things to say to the other parent. The picture is of Claire using her computer to negotiate at dinner. I say 5 more bites and now she says "less" I should have known that giving her this type of power would make things harder for me, but in the best possible way!

The Sweet Sound of an Adult Male Voice

The day finally came, and two weeks early! Yesterday Claire's Eco2 with EcoPoint came and we immediately got it set up. Well, we at least got it turned on and her page set loaded. Claire loved just playing with the pages and checking things out yesterday. She went through several letters of the middle of the alphabet and was very impressed with herself as was I. The other thing that she kept saying was "put silly hat" just like she had when we did the trial in Dec. So I dug out the hat and had it ready for the morning. I wish that there were words to describe the sweet look on her face when we went in this morning, it was better than Christmas! I had positioned the device on the table so that she could talk while I fed her breakfast. Immediately she navigated through 3 pages to get to her music and she selected "Rockstar" to play. I have read about how this whole system is based on muscle memory but I had no idea that the map would be right there for her! This is what she did every morning during the trial, of coarse she did it right away. I gave her a choice of color for her outfit and after a bit of thinking, she chose purple, not too much of a surprise. She then reminded me of her silly hat. I just can't say how sublime it is that we have this and she can use it in such simple and practical ways. What 4 year old doesn't want to have a say in what they wear? I sometimes give her the choice between jeans or a dress, or two different t-shirts. But this has so much more potential! I think that the first programming order of business will be to make a morning page where she gets to pick colors for clothes, hair style and have options to talk about the day. I did already get her a female voice "Crystal" is the name and I slowed it down just a bit so that we can hear everything that she wants to say.

Sorry, it's been a while

I am so glad to have survived October. Every year now, that month kicks my butt. Now that we are more than half way into November I am starting to recover. The time has been filled with lots of really great and fun times. It is really nice to have a little time to breath and stop and be thankful for it all. Claire is making a lot of progress right now and I am finding myself overwhelmed. I really didn't realize how I had stopped dreaming for her until she started to do things that I had never dreamed of and the process has been amazing. This morning she sat at the kitchen table with her talker. She kept playing her favorite song, stopping after 30 seconds and then starting it again. I really had hear the song enough so I returned to the usual running around in circles getting ready to get out the door. Since the shock value was gone she listened to the song in its entirety. Once it was done, I heard the talker say, put, put. So I went over and she had gone to the dress up screen on her own. Again she started "put silly hat" On the table in front of her was her new rainbow striped hat with purple flower ear flaps. She wanted it on for school. In her own 4 year old way she was getting through to me that she wanted her hat on for school, how typical is that! I love how she reminds me to take big pleasure in the small things. The other thing that she is teaching me is that God has a good sense of humor. I don't get computers, I don't like them. When it stops working I normally unplug it, walk away for a few hours and hope it is magically better when I go back. I am not a girly girl, never was. I wear jeans and a t-shirt whenever possible and might put makeup on twice a year, if you count lip gloss. Enter Claire, who wants to use her computer that reads eye gaze to discuss what dress up dress she will wear to the tea party with her dollies. I seriously don't think that I could feel any less equipped for this gig. Yet somehow, we make it through the days and most of the time we even have tons of fun. Who knew? Will try to be a bit better about posting, I always say that and never am, but I am trying.