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!

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!