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! 

9/20/18: General Bennett Update

Bennett's been doing pretty well the last few weeks since his last seizure.

Physical Development--He's pretty stable on his feet nowadays! He struggles on terrain like grass, woodchips, hills, etc. but he can manage it, it just takes a lot longer than most other kids who are 21 months old. He even kind of started running this week chasing us and letting us chase him! His giggle when he gets into a chase is just the best sound :). He still can't get the hang of staying upright when he tries to go down a slide, but we keep working on that core strength so hopefully that comes soon.

He learned how to swing in a big kid swing this week by himself! (With very close supervision, obviously, haha) That was a really really cool milestone to hit!!

Cognitive Development--His expressive language (what he can say) hasn't changed much in a few months. He still has some consistent signs and can verbalize a few sounds ("Daaaa"-mom and dad, "up!"-up, "baaaa"-bath, "uhlalala"-water and Olivia, "caaaaa"-car), but hasn't really picked up any new verbal words or sounds. He is trying to mimic our sounds all of a sudden, which is super fun. If we say "Can you say _____?" he'll actually try. His sounds aren't usually even close to ours, but he's pretty convinced he sounds exactly like us, haha! Maybe it's the beginning of getting a wider sound vocabulary and even some words? Hopefully! It would be nice to have other people be able to understand what he's asking for sometimes.

His sign language is about the same, but he has picked up a few new signs lately (macaroni, but I can't think of any others right now, haha). And he's just gotten very consistent with the ones he knows. He doesn't really use them spontaneously anymore to ask for what he needs. 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?" At least he's able to confirm what he wants when we guess right though, haha, we'll take it!

So overall, his expressive language is soooort of improving? A tiny bit.

His receptive language has improved a lot though! He understands what we're saying now the majority of the time, which means he can actually respond to things we ask him to do. He'll actually bring us something now if we say "Bring it to me, I can help you!", which is a HUGE improvement. So even though he can't exactly communicate to us what he needs, at least he's able to understand more of what we're trying to communicate to him. We're thrilled with that!

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's slowly getting the hang of chewing using his back teeth though. We've been working on just manually opening and closing his jaw to get him to understand what it feels like and yesterday he had 4 BITES of ground beef in his chili (he looooves chili, haha) which he actually CHEWED and SWALLOWED!! He was chewing the beans pretty well too! So maybe we're making some good progress there. It just feels like a glacial pace to me, haha. Luckily Olivia is also delayed so she's not in a high chair yet, or we'd have two babies in high chairs both basically eating the same foods!

Sensory Development--He still seems to need a TON of vestibular input on the day if we want him to be content and able to focus on anything inside for any extended period of time. Vestibular input is basically big movement, so for him that's mostly swinging or being thrown up and down, riding in a stroller for a while, being swung in a blanket between Dave and I, etc. And then baths always seem to provide a lot of the tactile input he needs as well. He's still sleeping perfectly though, so he doesn't seem to need deep pressure or anything to really settle down at night. He just needs about an hour and a half of reading in his crib quietly before he's ready to fall asleep, but we're not complaining :).

So overall, he's not exactly making strides in his development, but we're really proud of how hard he keeps working at his language and physical development even though it seems to be really difficult for him. It's definitely fun to be able to take him to the park and actually see him play with some things instead of just crawl around. Some of his favorite things right now are reading books, drawing on paper (and the walls, chairs, furniture, etc.), watching Daniel Tiger, exploring all of the drawers and cabinets, taking things in and out and in and out and in and out, haha, and playing with Olivia and seeing her giggle at him!

9/6/2018: The Seizure That Ended the 6-Month Streak.

The last post I wrote over a month ago was about Bennett starting to walk independently, which felt like a miracle!! I'm happy to report that his walking has only gotten more stable as time has gone on, which is even more of a miracle considering he had a seizure just 3 days after my last post. We were 1 week (to the day) shy of 6 months seizure free and I was really looking forward to celebrating that milestone, so this seizure was more difficult than most of the other ones for me. I felt gutted.

July 27, 2018. Bennett and I were lying in bed and he was watching Daniel Tiger (of course) on my phone while I was trying to catch a little more sleep before fully starting the day, when all of a sudden I heard choking noises and looked down to find him in a full-blown seizure--bloody drool dripping from his mouth onto my comforter. It lasted for a total of about 18 minutes start to finish, with a cluster of 4 generalized tonic-clonic seizures in there. I gave him the first dose of the emergency med (the one we had at home) right after the second seizure, but they didn't stop until the EMT's got there and gave him another dose. So in total I gave him 1.8 mg of nasal Versed, which didn't stop them, and about 10 minutes later the EMT's gave him another 1.5 mg, after which the seizures stopped within 30 seconds. He responded to the Versed great again--no respiratory issues and woke up fussy, but not having regressed at all.

He had been sick that week with a pretty nasty cold so I had actually been telling Dave earlier that I was worried he was going to have a seizure since this was pretty much the exact circumstances before his last one. He had just taken his first few independent steps, he had a cold (rhinovirus), and then he had a seizure after hitting his head. This time he had just started walking independently confidently, he had a cold (also the rhinovirus, as it turns out), and then had a seizure, but with no identifiable trigger.

I think this seizure was harder for me because I've had 6 more months of being engaged in the SCN8A community and coming to grips with the fact that sometimes seizures send our kids to the hospital for days or weeks at a time. Sometimes seizures cause sudden death. Sometimes seizures cause a complete loss of developmental skills. Sometimes seizures cause pneumonia. Sometimes the seizures can't be stopped without an induced coma. You get the picture. There's a lot more fear surrounding seizures now that I've watched 2 more of our young SCN8A kids pass away. And I was alone this time. I texted Dave and our nanny, Nicole, and they both headed over even though it was 8am in the morning (bless her!). Nicole got there first right after the paramedics arrived so she could help with Olivia, and since they let us transport Bennett to the hospital ourselves (quite a fight to refuse the ambulance...), Dave took him and I stayed for a few minutes to grab some things for the hospital before Nicole drove me over. (Our other car was in the shop that day, of course, which meant Dave was on Frontrunner when he got my text and had to Uber down back home.)

Thankfully, once Bennett had gotten some sleep and we were out of the hospital back home (couldn't get an IV in his veins after 4 attempts, including his head), he was acting like he hadn't even had a seizure! He was still walking, babbling, signing, etc. To say we were relieved is a massive understatement. I sort of live in constant fear that one day he'll have a seizure and wake up not knowing who we are or how to communicate with us. It's happened to some of the other kids and it terrifies me.

7/24/18: Look Who's WALKING!!!!

Bennett has had a great stretch the last month or so. We are STILL (cross your fingers) seizure free, which brings us to 5 months and 3 weeks today!! I almost can't believe it. As much as I can't believe he started walking 3 days ago!!!!!!! I didn't even share any videos of it until the second day because I was scared it would disappear and then I'd have to tell everyone that he lost it as quickly as it came. But here we are, and we have a little walker! He seems happier and more independent. And they weren't kidding about the walking/talking/eating connections. It was like a switch flipped 3 days ago because all of a sudden he's imitating words. Like real WORDS. Not just sounds. He's trying to say what we say to him. It's kind of incredible. And he's started to chew his food with his back teeth!

All of these things sound so small and insignificant when you compare them to the typical milestones of a toddler his age (19 months). But for Bennett, who's been stagnant at around a 10 month developmental level in all of these areas for 11 months, these are HUGE. And it's incredible to watch them all happen together so spontaneously. I wish I could connect the dots with what led to the changes, or what finally clicked for him, but honestly nothing has changed in the last few months, so we have no idea. Other than the fact that we just spent a week in Island Park, ID with my family, which meant lots of walking and talking cousins his age around him. That may have provided motivation for him to try some new things. And then of course the walker my parents made him has given him the confidence to try to walk everywhere he goes. I think that obviously made a huge difference for him and we're so grateful my mom pushed so hard to do that for us.

What's especially interesting is that just last week we met with James (PT) and after taking a video and slowing it down, he was able to isolate the fact that Bennett's left leg drags along and almost limps when he tries to walk. He was discussing cerebral palsy with us because he said that's how Bennett was presenting, even though it would be very rare to have CP develop non-congenitally. Except that a lot of the SCN8A kids have cerebral palsy, or at least CP-like features. So it wouldn't be unheard of. He was a little confused because Bennett didn't present exactly like anything he'd seen before, but he emphasized that it looked neurological to him since it wasn't totally consistent 100% of the time and his muscles don't seem to have any issues.

You can see that left leg dragging here.

When he walks independently now we still see some unevenness, but his leg looks WAY better than it did last week, which makes no sense! If it's neurologically based (which I agree with), it's confusing that all of a sudden he seems to be doing better. We'll just keep watching it and meet with a peds orthopedic surgeon soon to see what they think we should do about it. (Not surgery, obviously, but just who to work with to make sure we're using that leg and helping that foot and hip develop as best as we can).

Medications are the same at this point. 2 mL of Oxcarbazepine (Trileptal) 300 mg/mL 2x a day and CBD oil (5 drops) once a day in the afternoon. We don't want to mess with the cocktail since he seems to be doing great with seizure control and even development as of 3 days ago! Hopefully he keeps this up and we just keep seeing him learn more! We're so happy! We wish we could just be carefree and grateful he's walking, but it's always in the back of our mind that any seizure or med-change could take all of this away, which is so sad to us, but we're trying to just stay present in the moment and celebrate this HUGE victory!! Go Bennett, go!!!

Here he is in all his glory!!

6/15/18: 4 Months Seizure Free!

We've gone exactly 4 months and 11 days since Bennett's last seizure and I'm so grateful, but also feeling like another one is inevitable at this point. Once we hit the 3 month mark (last time's record), I started to feel anxious again about when the next one would come. But so far being on the Trileptal alone seems to be giving us solid seizure control!

As far as his development, Bennett's walking hasn't changed much in the sense that he still struggles to make it past just a few independent steps at a time. But we got a walker from our physical therapist last week, and then my parents made him a smaller PVC walker and ever since we got that, Bennett has just taken off. He still can't walk on his own, but he LOVES running around with the walker. The first two days he was literally running laps up and down the street, haha. It was pretty emotional to see him feel that sense of independence for the first time. I just wish he could walk and run on his own--not just for him, but because then I might stop wondering "Will he ever walk?". Since a lot of the SCN8A kids don't walk, it feels like a very real and scary possibility that Bennett might not either. That wouldn't be the end of the world, but it's just hard to not know.

His speech has stalled as well, if not regressed again. He doesn't mimic sounds or words, but he can sign pretty regularly and effectively.  He's actually started signing chains of words like "want" "food", then point to what he wants. It's amazing to be able to communicate with him, but it also means he's acting much more like a typical toddler when he doesn't get to do what he wants. It's like before he didn't get frustrated because he knew we didn't know what he even wanted. But now he knows we're actually saying "no", haha. So that's fun...

5/19/18: Signing Time!

The last post about Bennett talked about how awful the week had been with him (screaming for hours on end with nothing to help), but I wanted to update that because he has actually had a really really good few weeks since then. He is in such a cute stage. He wants to cuddle with anyone and everyone, but especially Olivia. He’s LOVING soft blankets (never showed an attachment to blankets before). He is smiley smiley if you work for it. His “cheeeese” is so cute I can’t even handle it. As far as his walking and talking go, he’s still in the same place if not a little bit regressed in the walking department. He can stand forever if he’s distracted, but he’s back to mostly taking a few falling steps or just crawling where he wants to go. It seems like a motivation issue more than anything, but who knows?

His talking seems to depend on the day. I can NOT figure out why some days he’s babbling and imitating up a storm and other days I can barely get an “aaahh” out of him. But on those great days he seems to be really trying to imitate! He’s just pretty bad at it, haha. He can do percussive sounds better than vowels and consonants combined. And he has pretty good pitch-matching abilities when he sings along to music. He’s also signing a few things consistently and seems to LOVE that he can communicate with us! We love it too. Right now he signs “more”, “open”, “food”, “milk”, want, “help”, “swing”, and “all done”. Most of those are really touch and go, and no one else would ever know what he’s doing with his hands, but we know what he’s doing and he has a few really consistent ones! Right now “swing” and “more” are the most consistent. Oh, and “open”, and “help”.

He's been on the same dose of Trileptal now for 3 months and 2 weeks and has been seizure free since we started it (longest streak yet!). We're hoping this isn't just a honeymoon period and we continue to see seizure control as well as developmental gains with no serious regressions. The side effects seem to be minimal and we love having a content, happy, stable Bennett!! It makes life about a million times easier than when we never know what mood we're going to wake up to.

We're grateful for the relatively good stretch we've had lately with him, we just wish we would see more progress mentally, emotionally, socially, and physically. He's way more emotionally attached to us than he's ever been, which is fantastic, but it's still hard to watch other kids his age and see how far behind he is without knowing if he'll ever catch up (or even move past this stage). Hopefully he continues to surprise us, though, and just keeps improving! We are loving our team with Early Intervention here in Utah. They've really helped us with communicating with him and getting him to engage more with us! It's such a blessing!