Communicating with device while watching movies!

Every so often I like to post tips on how to communicate with your kiddo while they are doing an activity. Today's is while watching a movie! Kreed is in therapy and makes a lot of progress, but he makes the most progress at home, taking what therapists have shown him or taught him and integrating it completely into his life. We expand on Kreed's language with his device at home in a variety of ways- such as watching a movie! 

Kreed has been nonverbal since he was three years old, so we've all gotten pretty good at reading the signs of what Kreed wants etc. But since he has had a device we "play dumb" in a way and instead of just instinctually knowing what Kreed wants, he has to use his device to tell us. So that means telling us what movie he wants to watch and then telling us about it.

There are some really quick and easy ways to get kids like Kreed (or even verbal kids!!) to communicate and learn language for a given activity that you often find at home, such as watching movies. With Kreed, he has to tell me to turn the TV on (or ipad) etc. Then he has to use a sentence or phrase and tell me WHAT movie he wants to watch. Generally after that it goes on etc. However, at some point I will normally ask him other questions such as WHO his favorite character is, how they FEEL or if he LIKES the movie or not. These are such fast and easy ways to get your child to undrestand concepts such as like/dislike or picking out the emotions in other people or characters. Most people think it takes hours for you to sit with your child with their device, but really, all of these clips below took three minutes or less! It's that fast and makes such a lasting impression.

Kreed used to be a child who threw massive tantrums, bite himself, hit everything and everyone, throw everything (literally- everything!) and everyone walked around on egg shells around him. While he still has his moments, for the most part he is super awesome, very communicative and his goal is no longer destruction and  chaos, but simple to learn to communicate his wants and needs with his device, and lately, more conversational language with it. And most of this has been accomplished with just a minute here or there- not hours upon hours sitting in front of Kreed with his device. We have a life and we fit how to use his device within that life.

Here are a few clips showing what I mean!

Strategies for Conversation at the Grocery Store

All over the internet I see different therapy strategies to get kids to communicate. However, what I see less of is telling parents how then to naturally incorporate it into their child's life. We do this with Kreed every single day. Probably an advantage of living with a behavior therapist! We use every moment we can as a teachable moment. As I said in my last post- sometimes all you need is 1 minute to do this! Here are some very basic strategies to  generalize language for your child. Although this is tailored to kids and adults using an AAC device, this can work for verbal kids to as a way to increase their language and answering questions.

1. Ask the child WHERE you are going

2. Use a visual grocery list and ask the child WHAT you are going to get

3. Ask WHO is going on the trip

4. Allow your child to also help retrieve items so there is also RECEPTIVE understanding.

These are fast an easy ways to reinforce basic WH questions your child may learn in therapy and begin to understand real life aspects of going to the grocery store.

We do this often for Kreed in different ways. Here are some videos highlighting this, although not always specific to grocery store- sometimes I'm asking a WH question about other places as well, but you get the general idea. Each of these moments takes maybe a minute or two! Thinking about implementing all of this does not take much time at all. Normally I'm asking him these questions right before we leave and I might re-ask just as we arrive at the store and maybe some time during the store. But again, these are not ten minute lessons. Most of this is LESS than a minute long!




I really hope this helps to illustrate how to carry over things your  child may learn in therapy but even more, how you can just use a device or language in any way at home with your kiddo. These are short and fast ways to increase your child's language and ability to answer questions!

 

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!!

First time initiating conversation in 16 years

Kreed has been using a device for about two years now. In that two years he has made incredible progress. We now know pretty much at all times what he wants and what he needs. That is a huge step in the right direction. However, we wanted to move beyond simple requesting. Kreed has always been expressive with his body language and facial expressions, however, this has not translated into actual conversation before. 

Since he has had his Dynavox T10, for about a month now, his language and communication ability has had an incredible leap. He has told us what his favorite song is, things he likes to do, if he wants us to change a movie and even use more language to ask for the things he wants. However, he really still wasn't asking questions or having a conversation with a communication partner. His language was ME focused. There wasn't a whole lot of other people factored in, except to get him stuff!

Until last Sunday. When for the first time in 16 years Kreed wanted to ask another child if they saw a particular movie. Kreed was at the park with his speech therapist and two daughters. She brought them along to see if we could start some social. For the most part he ignored them. Then at the end of the session he stopped in front of the cars and turned toward Haley, the youngest daughter. He lifted up his device, went to his movie section and hit a movie and then stared at her. We were caught off guard! I quickly went to see what question he could ask her and so I prompted him to add "did you see that." She took the ipad with the companion Compass app and replied to him. He grinned so huge and quickly went to look for another movie to ask. This went on for about fifteen minutes. He would find a movie, I would prompt him to ask the question and she would respond. It was beautiful. And Kreed couldn't have been more thrilled.

Kreed is proof positive that learning never stops no matter how old. We have worked for a long time to incorporate more language, but it wasn't until he had the right communication software and the want to communicate more. Persistence pays off.

Here is a video that was clipped together of what happened.

In fact, today Kreed opened the oven to look at his sugar cookies and asked me "Is it done yet?"!!! Then when his buddy Bill came over, he looked at him and said with his device "can we go bowling today?" How amazing is this? It's like he finally realized conversation could be a two way street! I can't wait to see what else he has in store for us!

Here is the video of Kreed asking about the cookies!

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.

Kreed's Complicated Autism Life

Well, finally back to the blog. The kid keeps me busy! His blood-sugar continues to drop every day, sometimes multiple times a day. It's not easy feeding him so frequently, but the tantrums have gone down significantly and he is back to communicating and learning new skills.

This weekend I will write a longer post because I want to talk about Kreed's device and Dynavox. Having a communication device has changed Kreed's life in so many ways. He could prove to people the things he's always had in his head. While it wasn't miraculous like the Carly Fleischmann's of the world, it was miraculous to us. I at least always know what Kreed wants.

Lately he has been communicating more since Dynavox came out with their app: Compass. It's everything I would have ever wanted in an App. Ever. Seriously. Amazing. I hated it at first, but have grown to be blown away by it. Kreed too.

Lately Kreed has FINALLY been telling us when he has a headache and requests "medication." He says "can you get my medication." So happy. We figured this out because he kept asking for doctor. Finally I asked if he had a headache. He nodded his head. So I took him to the medicine cabinet and said- do you need medication to stop the hurt in your head? Again he nodded. So I gave him his compounded ibprofen. And he didn't ask for doctor again. Now every few days or sometimes more, he will request either doctor and then hit the medication button on his device or he will just hit the medication part on his device. It's been an amazing discovery and I'm so proud of him.

Things like this show me how much he is growing, even when there are bad times like the last six months. And my heart breaks for the life he sometimes lives. He went so many months raging- and when I say raging- I mean full on rages. He is not present during them. I can't talk to him. I can't talk him out of it. I couldn't say anything that made a difference. He had to go through it and I had to protect him from himself. It was horrible. Now seems light years away because he is so wonderful and loving now. So it breaks my heart that he went through that and we had no idea it was his blood sugar crashing all day long. Makes me so sad. So any voice I can give him, I will work damn hard to give him.

I will continue to post videos to his youtube showing his progress: www.youtube.com/kreedsvideos. Also on his other accounts- instagram (Kreeds World) and twitter (Kreed's World) and facebook: www.facebook.com/kreedsworld .

Well, I wrote most of the above a few hours ago. Now feeding him his last snack before bed and get his blood-sugar high enough before he goes to sleep. I'll end this now. More to come.

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.