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! 

12/19/18: Official Autism Diagnosis.

Yesterday, we finally had our official Autism evaluation with Utah Behavior Services (a child psychologist) and very quickly received confirmation that Bennett does, in fact, have Autism Spectrum Disorder. It was an interesting experience to be in the room with the psychologist watching him test Bennett and seeing the deficiencies so clearly. I think we've just seen Bennett come such a long way that I forget how much he still doesn't do--like care if we're in the room or not, make eye contact, initiate engagement from us, smile easily, etc.

While it was difficult to watch him basically ignore the psychologist and me for an hour, despite repeated attempts to engage with him in play, it was also reassuring, in a way, because I have felt that he has struggled socially for a very long time and it was nice to have an expert validate that for me. It also helped me feel better about feeling like it takes so much work to engage Bennett and play with him because he actually requires a lot more work than most kids. It made me feel like a better mom, haha.

One of the first things the psych said to me when we walked in was that a lot of kids get an Autism diagnosis when they really shouldn't because it's more of just a language delay, a sensory processing issue, a general cognitive delay, etc. I think he was preparing me for not receiving a diagnosis despite the language issues. But within about 10 minutes he was quick to realize that I wasn't nearly as concerned about the language delay as the social impairment (as far as the reason we were there for the testing). As he watched Bennett playing in the room (before the official eval had even started), he was already pretty confident he would qualify for a diagnosis. The formal evaluation just further confirmed it.

One really nice thing that came out of the evaluation was that the psych was so profuse with his praise for Dave and I for how hard we've already worked with Bennett with early intervention. He was able to see that Bennett could perform a lot of socially appropriate behaviors because he had been "trained". These were things like pointing, signing, asking for help, looking at us when we called his name, sitting down when we asked him to, etc. Those things have taken months to achieve, and he could tell that Bennett didn't really understand why he needed to do them, but he did them anyway because we have worked so hard on them with him. He was really complimentary of our emotional engagement with Bennett's development already and said he was hopeful that we would continue to really help him a ton as he gets older.

So...what does this all mean? Basically, I wanted to make sure we had an official diagnosis (if he really did have autism, of course) because you qualify for additional services in the schools as well as different therapies insurance will be willing to cover better. He recommended ABA therapy, which was heavy.

ABA stands for Applied Behavior Analysis, and seems to be the gold standard for helping kids with autism develop more neurotypical social and adaptive behaviors. It's pretty similar to what we already do with Kids on the Move, but the difference is that it's 25-40 hours a week of in-home therapy with Bennett, where KOTM has been basically about an hour or two a week with different therapists. Obviously this is a massive life-change, and I'm a little overwhelmed about how to handle it.

Finishing my PhD is looking more and more impossible and I worry about Olivia getting the attention she needs, as well as Dave and I not cracking under all the stress. I know lots of families do this and people say it really helps, but I just feel nervous and I've never really understood how people do it, to be honest. I guess now I'll find out, right?

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As a side note: We are almost 5 months seizure free!! We've stayed at about 2.7-3.0 mL of Oxcarbazepine and it seems to be controlling things. The CBD oil has continue to help with his engagement and spaciness (although he's been spacing out more and more the last week or so), and we added and appetite med (Cyproheptadine), which helped a little with his eating in the beginning, but now might just be making him hangry while he's still not willing to eat anything besides macaroni and chocolate chip eggos, haha. Pediasure is life...

Here's a video of Bennett "reading" to Olivia...and saying "Balloon"! <3

We noticed massive improvements in his engagement with us when we started playing mellow classical music in the background at home a few weeks ago. It seems like it is much easier for him to make eye contact and stay focused with us than it used to be, which is awesome. Now if the music is off, he'll be harder to engage and we won't realize it until we remember we need to turn it on. It's kind of crazy how quickly it helps him, actually! 

As always, thanks for reading!