Lu's AC Breakthrough

Ever since reading the fantastic book "Brains, Trains and Video Games" by Alicia Hart in 2011, which told the story of her son Ewan who has both Autism and EE like Lu, I have wanted to find a way that an Agumented Communication Device could help Lu to communicate with us. I talked to her SLP (Speech Language Pathologist) and she brought us a Dynavox talk box which at that time was a large and heavy box with lots of icons on it that speak words when pressed. Lu was totally unimpressed. By that time she was already a wiz on her iPad and could get it to do far more than I knew how to do on it. She loved watching vintage Barbie commercials in German on YouTube and even figured out exactly what to do to download new apps. The talk box was big and clunky and looked totally outdated next to her shiny new slick touch screen ipad. I downloaded a couple of really expensive communication apps like One Voice, Proloquo2go, and My Talk, but none of them really interested her and she was so quick on the draw that she could click the home button and get out of those programs before we were able to show her much of what the programs could do. As with most things for Lu it was a matter of motivation and attention and after a few months of fruitless effort which included us taking actual photos of a lot of real things that Lu is interested in in real life, but couldn't care less about on her iPad, I gave it a rest.

At the end of Lu's preschool year, before she moved on to Kindergarden we had an IEP at which the school's SLP mentioned that we could request an AC evaluation. I jumped at the chance. An opportunity to get more information about what might possibly help Lu along is always gladly accepted by me. The team who evaluated her recommended a Spring Board device with the same kind of super basic icons as the old one, but on a smaller and lighter device. Worth a try I thought, so we borrowed one from the NAU Assistive Technology Department for a few months, but it was met with the same distain from Lu as before.

This year a LAMP app was finally released for iPad. This time I was excited. Lu loves her iPad. Maybe on the iPad this program would seem more exciting. We again borrowed an iPad from the NAU AT department that was set up to only have the LAMP program on it and nothing else so she would not be tempted to navigate away from the program to find other more interesting things to look at. We even programmed in an icon for her to request her other fun ipad. It worked slightly better, but just about the only thing she ever requested with it was her ipad, which she could request verbally if she wanted to. So after awhile of us trying and the SLP trying, we eventually abandonded it again.

And then came the ipad mini. I don't know exactly what it is about the mini, but Lu absolutely loves it. Once again we put nothing but the LAMP program on the mini so the only thing she can do with it is use it as a communication device, and finally for some reason, this time it clicked. Maybe she likes the size and the shape. Maybe it's the way the icons look smaller on the screen. Whatever it is she started exploring it. First she learned where the animals are on it, the pets, the farm animals, the zoo animals, and then she started checking out the toys and the food. She asked for hot chocolate. Not chocolate milk which she has asked for before, but hot chocolate which she had only had a few times. We discovered that she loves hot chocolate but didn't really know how to ask for it. Then she asked for grapes. She has never asked for grapes before. I thought maybe she was just poking buttons to see what they would do, but she really seemed to want grapes. She also asked for tacos and hotdogs which she had never eaten before and seemed disappointed in once she got the real thing, but at least she was trying and asking for new novel things. And then the most amazing break through of all. Stew came in from work one day, kind of dirty and a couple of days unshaven. Lu was doing her feed on the sofa and he knelt down to say hello and he asked her for a kiss. Lu's version of a kiss is to either put out the back of her hand for us to kiss or to lean her head forward to allow us to kiss her on the forehead. She let Stew kiss her hand this time and then looked down at her ipad mini where she found the body parts section, and then pressed on 'beard' then she went back to the home button and found 'no'. She made the box say 'Beard no' and then repeated it while putting her hand on Stew's face. She didn't like his stubly beard. This was something that she has never had any way to express. How long has she not liked it when he tried to kiss her with an unshaven face? Possibly always, but she could never tell us before. Stew and I looked at each other amazed, then he ran to the bathroom and had a quick shave. When he came back smooth-faced with a few cuts here and there he knelt down again to show Lu. She put her hand on his face and smiled. He said 'no beard'. She said 'no beard'. And I think I was pretty close to bawling my eyes out. Since then she has been saying all kinds of things to us with the ipad. Some of it makes sense, some of it doesn't. She is still exploring and playing with a lot of it. But another great moment was once when she touched the icons for lion, then tiger, then bear. She hit the talk button to make it say 'lion tiger bear' and then looked right at me and followed it up with 'Oh My!'. I knew exactly what she wanted then. She wanted to watch The Wizard of Oz.

That one little experience of Lu figuring out how to ask me to watch The Wizard of Oz made me marvel and the thought and effort she has to put into something that is so thoughtless and automatic for most of us. And I think that it really goes to show that a lack of speech is never indicative of a lack of thought. Lu has to put so much thought into how to help us understand what it is she is trying to tell us.

Here is a little video of Lu using her iPad Mini to let me know that she wants Goldfish Crackers and Pizza! Unfortunately I have yet to find a decent tasting wheat and dairy free Goldfish Cracker substitute. If any of you other EE moms out there have found some please write and let me know.

Some Progress. Finally.

In my last post I listed some of the many medical things going on with the kids these days and how much we were hoping to have some really answers soon. And finally it seems that a few answers are forthcoming. Myffy saw the ENT who has put her on a course of mild topical steroid treatment for her adenoids delivered by nasal spray which he said we would know was working if her snoring decreased and her sleep improved. Almost immediately we noticed improvement! The past several nights have been some of the best sleep Myffy has had in ages! 

The past several nights have also been the start of Lu's trial of a migraine prophylactic medication that has a strong sedative side effect. And she has been sleeping better once she gets to sleep. When I have asked her if she has ow and touched my head and then pointed to her head, instead of touching her own head and saying ow the way she usually does, she looked right in my eyes and said no! The first time we gave her the new med we thought she was having an anti-sedative reaction to it the way she did when the dentist tried to give her valium in order to work on her teeth. It seemed like she was on speed or something. Totally manic, jumping, screaming, laughing uncontrollably. Not that she doesn't have those moods on her own without any medication at all, but the fact that every night we've given it to her she immediately has this manic half hour to hour and a half or so and then very suddenly dropped into sleep like dropping a stone, makes it seem connected to the medication. The first night I had stepped out of the bedroom to let Dahanna outside and then brought her back in and I heard Lu call out "Mamma!" By the time I got back into the bedroom and climbed up into bed next to her she was so soundly asleep she didn't even stir as I covered her and moved her ipad out from under her arm. The second night was similar though that night she got up after doing her feed and was manic for quite awhile before I managed to coax her onto the sofa to watch Tinkerbell 'The Secret of the Wings' with me and cuddle until she was just on the edge of sleep, then I carried her into her own bed and snuggled until she was out which took about 2.5 seconds.

Lu's glasses also seem to be helping with everything quite a lot. The fact that she really wants to wear them, keeps them on all day and only wants to take them off to go to sleep leads me to believe that they are helping her see better. And all of us have noticed that she looks at things for longer periods of time where before it seemed like her eyes darted from one thing to another pretty quickly. And her coloring and drawing have suddenly taken a dramatic turn towards precision and figurative representation. 

The other day she drew this drawing at school and when Madison, her school aide asked her what it was Tallulah told her that the main figure was a horse and that the drawing in the upper right area was eyes and that the small figure in the lower right was Dahanna. In the past she has often asked us to draw things for her and then colored them in and she always loves coloring in coloring books and stuff like that, but she has never completely free hand come up with a figurative representation this way. It is all very very encouraging. 

Now we just need to get through Myffy's endoscopy and biopsy to check for EE in a couple of weeks, get the results and act accordingly, and then I will hopefully finally feel like we are on top of the kids' medical concerns again. Whew.