Saying more with less time...

When I talk to other families, I find that most don't know how easy it is to implement devices at home in most situations. Especially families who are getting a device for the first time- it seems overwhelming at first. That's why I started shooting videos of Kreed that are a minute or less- showing how fast you can have an interaction in just a minute! Take this 45 second video:

 A lot of what we do with Kreed is in short bursts. We take opportunities as they come. Everyone has so much to take care of day in and day out, but these short couple of seconds or few minutes can be worth so much to your son or daughters life when they are using AAC to communicate. Unlike you and I who can always say what we want and when we want it, our kiddo's are forced to wait for the right time or have to be taught what language to use in what situations.

 

This is perhaps the main reason we use Kreed's device in every situation- he has to be taught how to use the language on the Dynavox in any given situation- from asking when the cookies are done (instead of opening and closing the oven a billion times) to requesting for me to go get his Ruffles and water versus handing me a plate and a cup. I have to teach Kreed to have purposeful language.

So I try to tell families, just take these thirty second bursts ot a minute to have these nano conversations. Our kids rely on us 100% to communicate and I find it only fair that I try to expose Kreed to as much language as possible with his device. This is why I love the Dynavox T10- his device- it has so many phrases pre-programmed, I have to do very little programming outside of what they have which has been wonderful. And if I do have to program anything, it takes like half a second, so we aren't losing valuable time having to program the darn thing! And the phrases they selected for them to use is un-matched. It has catapulted Kreed's language way ahead. All of this progress! And it makes these mini conversations super possible! For more video's on Kreed using a device, head to his youtube- www.youtube.com/kreedsvideos . Here are a few more snapshots of short clips that are easy to incoprorate at home. 

What are ways famlies can integrate devices in their every day life?
- During meal time- asking for more, saying all done, telling what they want to eat
- During car rides- what song they like, if they want the window up or down, answering wh questions about where you are going and what you are doing
- At stores- using a grocery list, talking about what you are going to buy, what they want to buy, where to go in the store
- At a department store- where they want to look or go, what they want, using a store list, talking about things you see at the store
- At the park- requesting where to go, what to do, commenting about activities at the park
- Watching videos- Wh questions about what they are watching, requesting movies, requesting to stop, play, eject, a different movie or episode, if they like the movie or don't like the movie

I will continue to add tips!!

Kreed these days...

Well, I've done a very bad job of keeping up with Kreed's blog. I am going to try and change that and make Kreed's blog central station. Just a few months ago I created Kreed's World and all it's various social media, never knowing it would become a thing. A lot has happened in Kreed's World in the last few months as well. I started all of this also when he was nearing the end of a medical journey. Which basically took a kid from looking like this:

To looking like this:

What an incredibly journey. I write about it more in past posts where we first figured out it was no just behavioral, that maybe it was seizures. Then we saw it wasn't just seizures and we thought maybe it was low blood sugar. We were correct on his plunging blood sugar levels but not the reason. Here were a few of his levels:

First everyone thought seizures. Then we went to his genetic doctor (for his various issues plus metabolic disorder) and Endocronologist (due to his hypothyroidism) to try and find answers. Both were intrigued and wanted to run a bunch of tests. Basically looking for a shot in the dark. His Endo came up with the winning goal. His cortisol level was wicked low. No where near where it should have been. Alas we had an answer- cortisol does a lot for your body including keeping blood sugar fine, as well as helping your body manage stress. So for who knows how long Kreed was not able to deal with stressors like you and I and he had plunging blood sugars. The whole thing breaks my heart. Anyhow...he is diagnosed with an ACTH Deficiency, which basically means his body does not make cortisol correctly or in enough amounts. Very similar to Addison's Disease. The cause is not sure as of yet. There also still may be both underlying mitochondrial issues and nerve damage. We are still searching for all the answers.

All we know is that once Kreed started cortisol replacement with hydrocortisol...he was a different kid. Back to being happy. Back to learning. Back to communicating. And his communication is where I will go next.

Kreed first got the new Dynavox Compass app and within the first week he was already saying more than he had in the past. With his previous Dynavox Maestro and his other devices (PRC and others, you name it, we've tried it), the most he really ever did was request what he wanted- which left out pretty much responding to questions, making comments, asking questions and helping breakdown's in communication. The very first night we showed him the new app he giggled like a little school girl. I'm not kidding. I even have it on film. It was amazing. The Dynavox Compass software has more vocabulary and language than all the other devices combined. I'm not kidding either. Devices is also my life's work and I'm saying this. It easily takes Kreed from just requesting to commenting. I've never seen anything like it. Plus, it has all the behavioral supports built in such as schedules, timers, first/then charts and all kinds of stuff that's for another post. Kreed knew it too!

Now we've seen him comment on songs and movies he's watching. He is much more specific in asking for what he wants. But probably the most profound aspect of the new device- which he was able to get a Dynavox T10 which is their tablet stand alone device with Compass- was his ability to now cope with us telling him no or wait. Prior to his device, I would get boxing gloves ready and pretty much get ready for a fight anytime I would have to tell Kreed no. I'm not joking either- I have pictures and movies to prove it!

Now when I tell him no- he negotiates with me. He will first ask me in every way possible for what he wants and let me tell you, he can get very creative ha. Then after that I always remind him and ask him "what was my answer" and he goes and hits no. Then we will negotiate for a bit- he will ask for something and I will tell him something until we have a mutually agreed upon activity. Do you know how profound this is?? I don't think peopl realize. I could never tell him no before without a major production. Now he has a huge amount of language and actually goes back and forth with me like a regular teenager. I wish I could shout this from the rooftops because it's amazing to me.

So many things have been amazing to me, from him telling me what his favorite song is, to what he wants to eat, to how he feels at a given moment to accepting no for an answer. For some reason the software is very easy to navigate and Kreed does not have to build every single part of his sentence so very quickly he can speak to me, as if he was using his voice. So instead of saying "I want you to bake cookies" Kreed will say "cookies, you bake it." Not as grammatically correct but Kreed likes to use nouns first and then qualify it. Just like with songs he will say "Part of your world, that's my favorite." do you know how many key strokes that took? TWO. Before it would have been word for word- 7- or at least 3 (assuming one key was the whole song and the other two might have been my and favorite). I will have to make more videos showing this.

Kreed is now using his device in every aspect of his life. It's amazing. And more amazing things I think will come. For now it's late ha and I need to go talk to him about bedtime. Yes, I can actually talk to Kreed about bed time now. In the one month since he started the hydrocortisone he is now having mini conversations with us. I'm still amazed by this. I leave you with my favorite picture right now. It always brings me to tears and I can't explain why. But it's simply beautiful to me. As is he.

Where do I even begin??

I started this blog with the intention of blogging frequently. Kreed must have heard this thought I had, thought otherwise and said" Challenge Accepted." And so begins our journey of behavior and medical mystery.

About six months ago Kreed began to have SIB on and off and tantrums on and off. No big deal right? He has autism and is in puberty- to be expected! Then you have a kid that also has epilepsy, hypothroidism, a metabolic disorder (SCAD), immune deficiency and the list goes on. First we assumed the tantrums were related to just autism, his understanding and lack of communication.
Oh and his OCD- have I talked about that? No ? Probably because it was such a nightmare. The kid was obsessed with food places. Five Guys has a checkered print inside the dining area. Kreed could pick out a checkered pattern ANYWHERE and show me that's what he wanted. But it wasn't just that he wanted it. No no no my friend. It's that he wanted it ALL DAY. I went to Five Guys one day many  many times and guess what- he never got tired of it. He didn't even eat the food. He just had to keep going. Eventually nothing was enough for him. It was like everything was stuck in a loop for him. So, we looked into a medication, found one we liked and tried it. For three weeks everything was a miracle. See post below when we were still in our happy place.

Then came our trip to Virginia. My annual trek where he gets to do things he doesn't normally get to do like boating and tubing on the Chesapeake Bridge. And he loves my brothers! Well, then the tantrums came. And not just any tantrum- the let me bite my fingers off, oh you don't like that, then let me bite yours off- kind of tantrum. Gee, Fun. It was horrible. Somehow we got through the week with a few good spots and even flew the kid home on an airplane with little incident. (Yes we conquered the whole "how do you fly a non verbal kid with autism on an airplane" question).

And the tantrums continued. And continued. And got worse. And it felt like every day he gained about fifty pounds of muscles into his tantrums. It was incredible. Crazy.

We looked into everything. Nothing was working, even taking him off the medication- even worse his OCD came back fast and added to the tantrums he was already having.

And when I say tantrum, I don't mean, oh he's yelling and screaming and throwing himself on the ground. No. I mean he would bite his hands until they bled, bash his head either on his knee, the wall, counter of the floor, or he would bite his foot or his knee until bleeding occured. If you tried to stop him then he bit you or hit you or kicked you. And he is sixteen and the strength of fifteen men when he is angry. The new word I will use is rage attack.

Oh and he started to have crying fits. So now we have rage attacks and crying fits in between. We didn't know what the hell was going on. We looked at food (he has a crap ton of food allergies), we looked at medication, we looked at his schedule, we used his device, we looked at his sleep- we looked at everything.

Finally I decided  I could not spend another day in a wrestling match with him- he was bruised and battered and I was bruised and batter. I know people will often put a kid like this in a psych ward to get some meds pumping or whatever, but Kreed is not one of those kids. He could never eat the food there with his allergies. Nor could anyone understand his unique medical needs- the immune defiency and SCAD alone would make it near impossible. Not to mention the fact that I would rather take Kreed to live on a beach in the middle of no where and feast on fish I catch, than put him somewhere that he doesn't understand why his people aren't there and strange people are holding him down. I couldn't do it. Ever. Period. That's my own personal opinion, I know some people aren't as equipped and I can certainly understand. I happen to be lucky and work as a behavior therapist and I think sometimes that gives me a leg up.

So I did the next best thing to a beach hut and took him to the mountains to work out his issues away from all his triggers at the house and area he lives. Packed the boy up, he waved goodbye to his mom and off we went.

Magical things happened. The whole time we were there he had only three rage attacks to note. The rest of the time he was the boy I love so much- happy, smiling, giggling and thrilled to be in the cool weather that he so enjoys. And he loves rivers and mountains. No idea why, but he does. And through all of that, I was able to pinpoint his rage more specifically. He would always do the same exact behaviors before a tantrum- he'd stop moving, close his eyes and basically completely remove himself from what was happening. Then he'd go into a rage.

What does this signal my dear Dr. Watson do you say? That's right- seizures are back! At least this was the premise we began to go off of. When Kreed and I returned to the sweltering heat, we watched more with a keen eye and kept seeing those same behaviors with rages. This helped some. Then it all began to get worse again and I swear the kid even got stronger. And the crying came back too. Everything was there and even worse. So we took him to see his Neurologist.

The thing about seeing a Neurologist is if you are going to describe what is happening with the kid, nothing helps more than the kiddo actually doing exactly what you said. Damned if this kid didn't know what needed to happen! So he was happy, jumpy and so excited to be at the doctor (the kid loves doctors, who knows why). Then about five minutes before she walked in- he withdrew and closed his eyes. She walked in, he barely awknoledged her. She was listening but we could tell she didn't get it. Then I told her this is how he acts before a rage. Five minutes later- let the biting begin- he went full rage mode. So I went full therapist mode and got him all situated to ride out the rage. The doctor sat in wonder. But she got to see it all! So she ordered his seizure meds increased and scheduled an EEG to see how often he might be having seizures and all that good stuff he did ten years ago.

So you think we'd be thrilled out of our minds. Well, then he woke up the next morning and from the moment he woke up he raged. We wondered is it the new dosage, is it the other OCD medication- what the hell!! We tried a few different things and was met with the same result each time- rage and crying.

When you have a medical anomoly like Kreed, you literally have to go through the list to see what is wrong. Finally I decided- hey what about his blood-sugar levels? We looked up signs of low blood sugar and certainly some fit Kreed. So the next day after a rage in the morning I began to feed him literally every hour and a half. He didn't have a tantrum the rest of the day.

The next day I fed him every hour and half to two hours. He didn't have a tantrum all day.

The third day I fed him every hour and a half to two hours. He didn't have a tantrum all day.

Conclusions?

I can only see one conclusion personally. So maybe we hit on something. I can't say for certain but that's an awfully big coincidence don't you think? Now he is still withdrawing occassionally but we are still pushing the food and he seems to not rage. I also leave him alone when that's happening- many times I would disturb him during those withdraw periods and he would have rage later- maybe  confusion or disorientation.

Whatever the reason- everything we are doing is now working. Holy cow man. We still can't grasp what he has been going through, but the fact that he has had no rage attacks in three days with what we have been doing makes me breathe a little easier.

Generally I'm one that needs cold hard facts or see data to believe it. But there is also a lot to be said for trial and error. And although we didn't stick him with a glucose meter to see his blood sugar fall (try to explain that to Kreed, no you can't bite yourself, but sure I'll stick you with a pin and draw blood), so instead I have to rely on cause and effect. Push food- no tantrums. Less food- tantrums. There, enough said.

He is still going to have an EEG next month I would guess to see seizure activity. But for the first time in months we are breathing a little easier. Although I still catch myself holding my breath, waiting for the other shoe to drop...the heaviness weighing on my heart has released significantly.

So, this is why my youtube hasn't been update or blog and really only the instagram has.

And this is what's happening in Kreed's World currently. Perhaps a little light finally showing through the dark.

From this:

 To this:

I'll take it.

Some days...

Some days are better than others. Kreed's OCD started again and so we have nights like these...

 

But I wish it was like this...

Kreed makes his first phone call!

From Kreed's youtube: Kreed's had a tough few months medically so I haven't posted many videos. But the other day we started to have some more breakthroughs. Kreed said "me call Bill" (Bill is his favorite respite provider). So I texted Bill and he said we could call. Originally it was going to be a video call but his video feed wouldn't link up. It took Kreed a few minutes to recognize we called him and he was on the phone. I used my iPad and Skype for the call. It was amazing. Here is the final three minutes of that call. Kreed is shown his phrases page but for the most part Kreed is choosing what to say. Also of note- Kreed found "call" verb on his own and I still don't know where he found that!! Enjoy!

http://www.youtube.com/watch?v=pE8Bp5INP1U&sns=em

Changes!

So finally Kreed has been doing better. Tantrums are a little less and not as intense. For a few months it was really hard. Multiple tantrums a day and incredibly intense. When you're in the middle of it, that becomes your whole world and all you can see. Kreed stopped focusing on gaining skills and seemed to be in a lot of pain. Now that we had him checked out and began various treatments a lot has gotten better. I'm pretty sure he stopped having seizures and focuses a lot better. His pain seems to be less now with anti-inflammatories. 

With his device- we've entered a whole new world. Despite Kreed's issues- he seems to have prepped himself for a huge leap forward and we re-programmed his device so he will be able to communicate more effectively. He will be able to form sentences better and with more precision! More videos to come. 

So we had some rough months and some major issues, but out of it comes some few new language skills! Only hard thing now is his severe obsession with some food places and particular foods. So that will be our next major challenge!