1/27/19: 6 Months Seizure Free!!

Well, we officially made it to 6 months seizure free. We were a week shy of it last time, so I was ridiculously nervous this week that we'd have a seizure and not hit the 6-month mark. He did do something weird during his nap in his crib two days ago where he had what looked like a "drop seizure", but our neurologist watched the recording and didn't 100% say it was a seizure (you can't know without an EEG anyway, really), so I'm not going to count it. But even if we did count it--we still made it 6 months tonic-clonic seizure free, which is amaaaazing!! 

We are SO happy to hit this milestone, and just hope we continue the streak! It feels kind of vulnerable knowing that we're in the longest seizure-free stretch of his life right now. It just means the next seizure we have will probably hit me really hard. They always do when it's been long enough that I'm comfortable leaving him alone for more than 2 minutes at a time. But I'm trying not to focus on the next seizure. I'm grateful for the last 6 months of basically no med changes, no seizures, and no massive regressions. 

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I wanted to give a general update again:

Physical Development--He's started to try to run (read: walk fast), but doesn't quite have the stability or strength yet. He tries to "benddddd and jump!", but only gets to his tiptoes. He can't leave the ground at all on his own. He still struggles on terrain like grass, woodchips, hills, snow, etc. He just doesn't have the balance to be able to walk effectively there. We've been working hard on walking up and down the stairs (instead of crawling), and just this last month he's started to grasp walking downstairs. Walking upstairs still feels a little impossible for him. He has SUCH a hard time not just crawling up, and I have a hard time helping him while also helping Olivia, so slow going on that front, haha. He face planted and flipped over himself a few weeks ago, but seems to have bounced back just fine! He actually likes going down by himself most of the time now.

Cognitive Development--His expressive language (what he can say) has changed a ton since we started using the talker ("Speak For Yourself" iPad app). He LOVES playing around on it and practicing the different words, and it seems to have unlocked something for him to where he realizes he can try new words any time he wants! He now says random things like "color", "sticker", "sissy", "please", "thank you", "blanket", "sad", "upstairs", "bed", etc. Still working on those core vocabulary words like pronouns, articles, prepositions, etc., but the other day he sat on Dave's lap crying and pressed "feel">"sad" and then hugged him. It was pretty amazing. And then the next day we were playing and he pressed "need">"Mr. Potato Head", because he needed help with Mr. Potato Head! That was really cool too! He's finally starting to put two-word phrases together a tiiiiiny it. 

His sign language is about the same. Still relying on us to prompt him for most communication (verbal, sign, or talker). Very rarely he'll sign "help" if he can't reach or open something, but for the most part we have to prompt "do you want this? do you need help? Are you hungry?". Still signing "Daniel Tiger" like his life depends on it every day, but we haven't used TV in like 3 weeks!! 

His receptive language has just continued to improve! He still understands most of what we're saying and he's a remarkably obedient child, haha. If I tell him we have to put the cars away before we pull the blocks out he'll stop dumping the blocks, go put the cars away one by one, and then return to the blocks. He understands and responds to "no" for some reason (angel child!), and we're not questioning it!

Feeding Development--He still can't really chew with his back teeth, which means he swallows everything he eats whole, or he just spits it out. His diet has to mostly consist of pureed vegetables and fruits, yogurt, Gogurt (still his favorite), bread, Eggos, and other things that will dissolve in his mouth. I do think he understands how to chew using his back teeth, he just sees no need for it. We're still working to get him to "take bites" and "chew chew chew!" every time he eats, but we probably still rely on about 2 Pediasures a day to keep getting calories in him. Our doctors aren't too worried, but meal time is becoming more and more stressful for me. Every time I use a Pediasure it feels like I failed him, which is a heavy burden to bear 3 times a day.  

Olivia's been in a high chair now for about 5 months I think (?) and she eats EVERYTHING. She's like a garbage disposal--it blows our minds!! It's been good because every once in a while Bennett will want to experiment with what she's eating, but he's kind of getting over the novelty of sissy eating next to him, haha. She eats normal food, and he sticks to his super limited diet. 

Sensory Development--His sensory needs haven't been too big of an issue lately (except feeding probably falls under sensory stuff). He still sleeps amazingly well, down by 7 pm at night (reads for about an hour before falling asleep), up around 7:30 am (reads for an hour before wanting to get up), gets overstimulated by too much going on around him, but has learned to self-regulate with a book and a quiet place--rather than needing to rely on Daniel Tiger. I'm thrilled about his newfound reading/regulation skill. We can sit him on the couch with a blanket and he can totally reset--it's awesome! He still does better if he gets some vestibular (movement) input, but so does Olivia. 

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So overall, other than his feeding, he seems to be slowly progressing in most of the developmental areas, and our therapists are thrilled with his progress. We have loved watching his language explode since introducing SFY 6 weeks ago, and I'm hoping we can keep it up and keep helping him get more and more familiar with it. He's super cuddly right now--he loves to just come sit on our laps or give us hugs in the middle of playing before he gets up and goes right back to what he was doing, haha. It melts our hearts. He also really loves Olivia right now. He likes to push her around the house in the walker and they just laugh and laugh so hard together. He's been coloring for hours every day the past two weeks, and he especially loves playing with stickers. We haven't used Daniel Tiger in a few weeks because we're working on focusing on open-ended toys for both Bennett and Olivia and have noticed an improvement in his ability to regulate his emotions! 

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!