5/9/2019: ABA Evaluation and Seizure Link Monitoring System!

It's been something like 4 months since I last blogged and it's because things are going well!! Bennett's language has completely taken off with continued use of his talker ("Speak for Yourself" iPad app), and he's even saying full phrases like "head, shoulders, knees, and toes" at this point! His speech therapist is floored at his progress. Most people can't understand what he's saying AT ALL, but I mostly can, and it's a start. She says his clarity will get better with time, because as soon as they start stringing more words together apparently it gets harder to understand them.

2019 Easter Pics

We are still on 2.7-3 mL of Oxcarbazepine 2x/day and 3 mL of Cyproheptadine for appetite stimulation. His seizures are well-controlled. We will be 10 months seizure free in 2 weeks!! This feels so incredible to write. Almost 10 months since we've been in the ER in a post-seizure melt-down. We are so lucky and we try to never take our seizure freedom for granted because we know how difficult so many of the other SCN8A families have it with seizure frequency.

We had our official evaluation for our ABA (Applied Behavioral Analysis) services to start next week officially (FINALLY), and it was interesting because Bennett actually is doing pretty well! He's a little delayed, but in the last 3 months he's learned his colors, can repeat almost anything we say, responds to "no", says "please" and "thank you" regularly, has clear preferences for things, and can follow complicated requests. As she asked me what goals we had in mind we mostly focused on his eating and then increasing his social reciprocation with people when playing.

His eating. It is the bane of my existence. Seriously. He still basically only eats macaroni and cheese (but ONLY the Annie's brand of white cheddar shells), scrambled eggs, peanut butter, puffs, crunchies, and pediasure shakes. But 3 weeks ago he started asking for strawberries and he still asks for them daily!! He can't chew them with his back teeth, so we cut them into small pieces and he mashes them and mostly swallows them whole, but still--strawberries!!! He seems to actually pay attention to what Olivia's eating and every once in a while he'll try something new. We went from no new foods in over 6 months, to strawberries and willingness to try a few things in the last few weeks--so we can celebrate that!

Physically, he's also doing pretty well. He's not the most coordinated, and he still has core balance issues (can't really go down a big slide on his own), but his physical therapist is happy with his progress. We're basically just worried he's always going to be a little fatigued more easily than other kids. But he's walking, jumping with both feet off the ground, kicking balls, trying to run, etc.

Horse therapy to help core balance

I'm nervous to start our ABA therapy because it's going to be 3 hours a day, 4 days a week, and then the last day of the week will be our Kids On The Move therapists coming. Angie and Aprille (KOTM therapists) have given me the speech about being very clear with the ABA people about how to work with Bennett and what our specific goals are. They're really protective of him because they say he's one of their favorite little clients. He's just such a sponge and so bright. He picks things up in seconds--he just struggles with the more typical interactional subtleties and imaginative play. So I'm committed to helping the ABA people know how to help me with his feeding issues and also to use the talker with him as much as possible. Hopefully we like them!

Olivia's also doing great--she decided to walk this week and now she's walking all over the place! She's learning to sign with us and it's helping with her incessant yelling, haha. She's still a garbage disposal and will eat anything and everything as long as she's hungry. She's helping Bennett with his social interaction because he's forced to interact with her all day. Sometimes that results in some hitting and pushing (always followed with an immediate "Sorry, Olivia" and a pat on her head), but for the most part they like playing together. It's way fun to watch them be siblings!

We also got a new seizure monitoring system a few days ago! It's called the Seizure Link and it's a little white square that goes on the bicep, but it's cordless, and it alarms if it senses muscle rigidity for more than 5 seconds. We get a phone call and then it also beeps out loud. It's really amazing technology!! We're part of their early trials to try it out and it's not cheap ($500), but SO worth it to sleep soundly. Tonight will be the first night he has it on overnight and I'm already realizing there's been an underlying level of anxiety I have just gotten so used to about SUDEP, that I didn't even realize it was there anymore. I'll keep you updated on how it works for us. Bennett calls it "strong Bennett" because it's on his bicep, which is where taught him to flex and say "Strooooong!", haha.

So that's us! Nothing major to report--but that's the way we like it!! Stability, stability, stability!

1/1/19: Happy New Year!....and Continuing AAC.

It's January 1st! Crazy how quickly it feels like 2018 flew by. 2017 felt like the longest year of our lives, but here we are with a 2 year-old and an almost 1 year old! I've really appreciated the blogs I've found of the families who worked with augmentative and alternative communication with their kids as I've been figuring this all out with Bennett, so I wanted to document the journey here just in case it helps anyone in the future. And so that we remember the details when we look back.

We've been using the SFY (Speak For Yourself) iPad app for a little less than a week now, and I feel like I can safely say that Bennett 1) doesn't hate it, 2) understands that it's a form of communication, 3) enjoys pressing the buttons and hearing the different words, and 4) doesn't really know how to use it to tell us things we don't already know he's thinking, haha.

So I took to the internet to try and find tutorials and resources showing me how to begin teaching AAC, starting with the Nieder Family blog (who originally posted about SFY and have posted their own journey with their amazing daughter) and found a really amazing webinar series the Angelman Syndrome Foundation (I think?) put out a few years ago. It's basically 42 hour-long presentations by speech-language pathologists about how to start implementing AAC with your students (in our case, our child). It's geared toward professionals, but it's AWESOME for parents too! They also directed me to a few other great resources: PrAACtical AAC, AAC Intervention, and the AAC Girls Blog.

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I've gone through the first 4 webinar episodes from the Angelman education series and have already learned a ton. The biggest takeaways I want to emphasize and remember are:

1) MODEL. MODEL. MODEL.

Everyone says this, but I didn't really understand what they meant by it until the SLP went into detail in one of the episodes where she showed how to model with the device. Basically it just means that when we're playing, eating, watching TV, reading a book, out and about, etc., we need to be commenting on our world using the device just like we would comment on the world using our voice. The way she put it was "what goes in, comes out: verbal language in, verbal language out." But for our kids who need alternative communication "AAC in, AAC out." We can't expect "verbal language in, AAC out." We have to show Bennett that this is a legitimate way to communicate and that means using the system to show him what we're saying to him as much as humanly possible.

This is difficult--particularly with Olivia running around and trying to touch the buttons on the iPad when we're using it and playing--but I can already see his gears turning in his mind as he sees me use it more naturally. It's a total mindset shift, but one we have to make if we want this to work.

2) Get away from the NOUNS!! 80/20. They want 80% of the words on the device to be non-nouns. Meaning verbs, adjectives, pronouns, prepositions, etc. Only 20% should be nouns. They want to get AWAY from labeling things and just requesting things. "I want ____".

This was really mind-blowing to me because it made me realize that alllllll Bennett does right now is label and request! I mean, I think that's probably age-appropriate for a 2 year old, right? But they're saying that you can't use AAC for only nouns and then expect the rest of the language structure to fall in to place. If I'm using the word "and" in a sentence, I should press "AND" on the talker. If I'm using "now" I should press "NOW". You get the idea.

Before, we really only had a few of the "core vocabulary" words visible on the app because I didn't want to overwhelm him, but they're pretty emphatic about leaving as many of the core words visible as possible and trying to just use them as much as we use them in real verbal conversations with our kids. It makes sense to me, it's just another shift in mindset. But I like it!! I want Bennett to be able to make comments about the world around him, how he feels about things, what he thinks about, not just what he wants and needs.

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So those are the main things that I can remember right now, but they've already been helpful! Bennett is trying to say new sounds of words we don't really expect him to use like "and" and "to", and "what", just because I'm emphasizing them using the talker! It's awesome. I'm hoping I can keep this momentum up once real life starts again (we've all been on holiday break) so we can keep making progress. Thanks for reading! 

12/28/18: Speak For Yourself Communication App

A few days ago, someone posted on our SCN8A Facebook group about augmentative and alternative communication devices for our nonverbal kids. Most of our kids are nonverbal, and the ones who do have a few words also rely on sign language and different ways of communicating to be fully understood, since most of them struggle with expressive language. Bennett has great receptive language (meaning he understands most of what we are saying to him), but his expressive language is really low (meaning he can't tell us what he is thinking).

He does have a few signs he uses consistently and we get along alright with understanding most of what he's saying, but his vocab is really limited to what we already understand and assume he's saying. Just for the record, the words he has right now include: food, drink, water, shake, macaroni, Daniel Tiger, outside, swing, go, car, bye bye, love you, mom, dad, yah, no, uh-oh, help, want, please, thank you, and probably a few others I'm not remembering right now. We have to prompt him 95% of the time to use these with us, though, and the AAC (augmentative and alternative communication)  device is supposed to help him with initiating contact with us spontaneously.

I've thought about using an AAC device for a few months now, but I've been hesitant because Bennett does have a few words and sounds and I'm nervous to mess with his language development. After reading this post that someone shared, though, I finally felt like I'd found a good system that could help expand Bennett's vocabulary. I'm still nervous about whether I'm doing the right thing introducing this system to him, but I'm hopeful and excited about it!

It's called Speak For Yourself, and it's an iPad app you can download. We have an iPad mini we hardly ever use, so it wasn't a big deal to devote it solely to Bennett as his communication device. The app is amazing in a lot of ways, not least of which that it is ridiculously easy to customize and edit. It has the capacity to give Bennett 15,000+ word options, but we were able to start with literally just "eat" and "drink". I found pictures of his foods and drinks he's already familiar with and put them in there so he would know which buttons to press, and so far, he seems to be understanding the gist of it!

Here's his first meeting with the app (I can't get the video to load right now for some reason, so I'll try again later). By the end of the session he automatically knew to press "drink">"water" to get to water. And he knew where "eat" was to open up the menu to get to "peanut butter". He had some difficulty pressing the specific buttons correctly, but today (the second day of using it) he seems to be doing much better with his specificity. I'm amazed at how good he is at remembering where the words are!