What is the "talker"?

For the benefit of Kylee and others who don't see us in person I thought I'd try and explain Alexa's talker. It is an iPod touch and it uses an app that is called Proloquo2Go http://www.proloquo2go.com/. The website is great at explaining but it's basically a text to speech device. It comes with nearly 8000 preloaded vocabulary words, and you can add your own after that. We call it a talker because alternative communication device is just not a practical label for everyday use.

Her very clever teacher adapted a sports armband to stay on her very tiny wrist, and now it is quickly accessible. Alexa is fantastic with this device, she quickly learned how to navigate through the screens, and loves to explore the preloaded vocabulary pages. One great feature of the app is the option to take a picture with the iPod and use that on a button, so all her friends and family are in there. She uses it at school to do her reading and to do schedule each morning. She is beginning to use it with a lot of prompting to introduce herself to new people. She still tends to default to her high fives and performance of gymnastics moves method of conversation initiation, but I am trying very hard to steer her away from this method. It is proving difficult however, because many of the adults in Alexa's life find it hard to resist giving her a high five or a hug instead of waiting long enough for her to get her talker on and to the right screen. The additional difficulty is that the speaker in the iPod is not loud enough to hear when in a crowd of people. We got a bluetooth speaker to use in noisy situations, but that also takes a moment to turn on and those two moments are too much for many people, they move on to talk to someone else.

Visit to Aquarium: 4th of July

I'm trying out Picasa and blogging directly from Picasa, so this will be brief. We went to the aquarium yesterday for the holiday. David actually took a little time off work, a rarity around these parts, so it was fun to have a family outing. We got back to Philomath for Alexa's Motor Buddies class, which began working on baseball/T-ball. Alexa actually managed a couple of good swings and a couple of good throws, so that was fun. Now we're plunging headlong into our busy week. Today we have horseback riding for the first time in a few weeks, so we're looking forward to that. I recently found out that a picture of Alexa is on the Riverbottom Stable's website, it's kind of small, but if you know Alexa you can tell it's her.

Should I keep blogging?

Or more accurately, should I resume blogging? I haven't been too good about updating the blog for the past few months, and I have been puzzling over whether to try again, or sort of give up for good. I know that some people rely on the blog for keeping up with what's going on with us, and for the sake of some of those people, and for the ways in which I can use it to advocate for my daughter, I am inclined to continue. However, even when I was posting more frequently, I got very few comments, and my visitor map seemed to indicate a number of people in countries I'm sure I don't know anyone. This led me to believe that many of my blog viewers are not people I know, and not people I wish to share the more private details of our life with. I readily admit that this is at least partially my fault. I have a bit of a chronic oversharing problem, and I think this is partially due to the fact that I am the stay-at-home mom to a non-verbal child, so I don't get as many opportunities for conversation as I would like, but I need to define some boundaries with regard to what is personal and what is public. I know that I could make the blog private, and by invitation only, and this would alleviate some of my concerns, but it would prevent me from reaching as many people as possible when I do wish to address issues that are more public.

I have decided, for now, to keep the blog public, and to be more discreet about what I publish here.

The biggest news that I do wish to share is that in February we finally obtained a diagnosis for Alexa. She has a form of Cerebral Palsy called Worster Drought Syndrome, or WDS from here on out. There is a nice pdf document at the WDS support group page that will detail it for you if you want to know more, but it is basically a form of CP that most strongly affects the tongue, lips and jaw muscles.

The doctors in the clinic at Doernboecher recommended focusing on her AAC device for speech, since it is unlikely she will ever have much intelligible verbal language, and signing is somewhat difficult due to her limited fine motor skills. We do continue to us a lot of sign language, but it takes someone familiar with Alexa's particular way of signing to understand her easily.

We are trying to encourage her to use her talker as much as possible, and particularly out in public places. This is someone hard to do because she has relied on high 5s for so long that she defaults to that, and unless asked to, or waited on, she doesn't always use the talker.

It would be great if those if you who see us in person would limit yourself to one high five and then ask her a question or let her ask you one. How are you? What are you doing this summer? How old are you now? etc...and if you think of something you would like to ask and she doesn't seem to understand or have it in her talker, please let me know, and I will add it in. Her talker is on her wrist now, and is loud enough for a quiet area, I will try to have the bluetooth speaker with us more frequently to allow communication in a more noisy environment.

I would love to hear your viewpoint on the issue of privacy with regard to blogging, and if you do regularly read the blog, please consider letting me know with a comment now and then.

A few end of 2010 pictures

I wanted a picture of Alexa in her sock monkey skirt and legwarmers. These were made by a cool etsy shop owner for Alexa at my request and she loves the outfit. She's really into pockets lately, they're kind of distraction actually, when she's supposed to be doing something else she's trying to put stuff in them. We did some gingerbread house decorating with some friends, and Alexa showed Sally her new storytelling app Pictello.

Surprisingly she like eating some of the candy.

Tayler did a great job on hers.

Christopher spent about 30 minutes longer than everyone elso on his. Very carefully planned and executed.

I made a bunch of hats this fall, and Alexa has decided she like wearing them, so she is a willing model.

This is the one she wears to school every day.

We are all recovering from a flu that gave Alexa a fever on and off for 2.5 days. David and I got lighter symptoms, but we were all stuck at home for the whole weekend.

Alexa continues to learn new reading words and is able to read whole sentences now in Cat in the Hat. Her talker has been an amazing tool for her. Unfortunately it had to be sent in for repair when the speaker quit last week. I have let her use my iPod some, but I am a bit protective of it, so I didn't let her take it to school today. She does use a different talker at school for her reading. She's amazingly adaptive, and her sign language vocab is increasing rapidly as well. She's getting to be so independent and thinks she can do anything. Specifically she has been getting milk out of the refrigerator, but her aim for the cup leaves something to be desired, and we have been cleaning up a lot of spilled milk. I am trying to remember that this is a good thing, that she is growing up, but sometimes I really want to yell, and sometimes I do.

In other interesting news, she is beginning to be able to be reasoned with a bit. She will sometimes finish her plate of cold supper in order to get ice cream, and the other day when she said she didn't want to go to school, she changed her mind because she wanted to go to her dance class after school. These are the first signs of her being able to understand consequences and to look ahead that far into the future. Unfortunately she is also starting to be unwilling to get dressed in the morning, and too big to be forced into it. Now I often have to sing to her as a bribe to get ready for school. I am happy that she thinks singing is a good reward. Now I just need to go learn all the words for Teddy Bears' Picnic.

Pumpkin Time!

I love autumn, the leave outside are so gorgeous I often want to stop in the middle of the road and capture the moment with my camera, but that would be dangerous, so I don't. I also love pumpkin pie, possibly my favorite dessert ever, and I have tried a couple of different varieties of squash this year in my pies. I used some called Sweet Meat squash, and they were quite good, and this week I tried this one, a Cinderella Pumpkin. Perfect name for them, if you've seen a big one they have a definate fairy tale apeal. I apparently overcooked it a bit, because the pies were a bit dry, but tasty. So far I still prefer sugar pumpkins, partially for ease of use, both the Sweet Meat and the Cinderella Pumpkin were hard to scoop out without getting bits of skin, but the Sugar Pumpkins are easy to separate from the skin after baking in the oven for about 45 minutes. I usually get about a four pounder and get two to three pies out of it. Alexa recycled her Curious George Costume for this Halloween. We programed "Trick or Treat" into her talker, and David took her round the neighborhood a little bit.

I made a hat and wanted Alexa to model it for my Ravelry pictures, she defaults to this goofy grin when we ask her to smile. Still pretty cute.

And this blurry picture (she won't hold still) which I still love because of her direct gaze.

We have been sick for the past few weeks, first me, then Alexa and yesterday David started. Parent teacher conferences were last Thursday and Friday, and today was a random day off of school, so Alexa and I are both ready for her to go to school tomorrow.

Toothless girl

Alexa lost the other front tooth this morning, so she has a large gap!

We made this video a while ago, Alexa loves the sound of clothes being shaken out!

We got an iPod and app that are going to act as a talker for her. We are in the process of programming it to her personal needs, but so far she loves it, and is actually more verbal when using it rather than less.
David is very busy teaching his class at OSU, and I am only surviving the reduction in child care assistance because Alexa goes to school all day. Today I put a quart of home canned peaches on top of the refridgerator to photograph for the talker, and she opened the freezer door causing it to fall and break on the floor. I barely managed not to cry. That was one of only 14 quarts of peaches that are meant to last the winter, and they were a lot of work to can, not to mention costly.
Today was my first day to volunteer in Alexa's class, and it was quite fun. I love her class, there are so many sweet kids, and stories and music. Today I got to do art with the kindergarteners. There are 5 new boys in Alexa's class in kindergarten, so it is a bit difficult to manage all of them sometimes. Often they need to be physically held in place in their chairs, and the one I was wrestling with today weighs more than Alexa, so I am kind of tired this evening! Still, we got to draw skeletons, and then it was library day too, so much fun was had by all.

August already

Summer has been so busy that I don't know where to begin. When Alexa had her 6 year old well child visit to the doctor, he said that she had dropped below her growth curve on height, so he referred us up to the CDRC feeding clinics again to make sure she didn't have some vitamin deficiency that was keeping her from growing, though she did grow about 4 inches this year, which seemed like a lot to me! We also were referred to some specialists in neurology and psychology to help give us a diagnosis for her. Developmental delay is not a diagnosis beyond early childhood and insurance companies for one, begin wanting something more at her age. It also could help us get other services for her if she had some sort of syndrome that had foundations raising money for it. To be honest, I was kind of hoping for a diagnosis on the autism spectrum because it seems like there is a lot of help out there for those with autism. Fortunately or unfortunately, the doctors don't seem to think this fits her. She is far too social and interactive, and doesn't display the repetitive self-soothing behaviors that autistic kids tend to.
The feeding clinic weighed and measurde her and they think she is tall enough, but still isn't gaining enough weight to keep her BMI up in a good range. So we are back to trying to fatten her up by slipping fat into her vegetables, and trying to expand her diet. The dietician warned me that we can't just offer her the things we know she likes, or she will always be this picky. The difficulty is that she is very stubborn, and can't be forced into it. When we were kids my parents made us try some of everything on the table, but I think we were a little older than Alexa is now. Right now we just have to sneak a little of something new into the things she already likes, so we put a little peanut butter on some of her crackers, or add some raisins into her oatmeal. One of the most frustrating things for me is the food waste. I also get frustrated when she stops eating something that she used to eat. About 6 months ago she loved Craisins, but now she won't touch Trader Joe's dried cranberries. Probably because the package is different. She will eat grated cheese, but not cubed or sliced. She won't eat crackers that are any other shape than Annie's Bunny crackers. She won't eat Bunny Grahams. Her favorite food this summer is bell peppers. A very low calorie food!
In addition to all the food fun, we had a rotten day back in July when we were first scheduled at the CBA (clinical brain anomaly) clinic in Portland. We got a call cancelling our appointment 45 minutes before the scheduled time. I was already in Portland. I was so mad. Then when we got home that afternoon, Alexa fell and cut her face right at the edge of her eyebrow, and it had to be glued at urgent-care. (Where it always takes three hours, even when there are only two other people there.) Alexa lost her first tooth (I think this was on August 5th.) We didn't know it was loose of course, since she couldn't tell us. She just walked over to David with blood coming out of her mouth, and he asked me if I knew how she hurt herself, and then she spit something out, and I realized she must have lost a tooth. About two weeks later she lost the one right next to it. (I kind of pulled that one, she wanted me to help her, but it was very challenging, those baby teeth are so tiny!)

We went to the fair with Penny, Chris and Christopher. Alexa loved this vehicle the best, but I can't remember what is is called, a loader? I should know this, since we have about 5 truck books, but half of them are from the UK where they call dump trucks tippers, so I forget what they are called in the U.S.

The had a smaller backhoe one that she got to play in. She was in heaven!

I figured out how she gets so much food in her hair when she eats. She drops food in her bib, and then looks down to scoop it out, and her hair gets in her bowl. I started putting a bandana on her head as a sort of second bib, but it looks kind of cute this way. She has started to love wearing hats so she leaved it on without complaint.

The picture is unclear because my camera lens had a fingerprint on it. (A small finger...) Summer's almost over, school starts in two weeks, and Alexa will be in first grade. I am very excited!