Update on Cinna and Kreed's story

Cinna’s training has continued to progress and I thought it was time for an update on Cinna and Kreed. I last wrote about Kreed’s service dog Cinna in July 2013, click here: Service Dog.

Since then, Cinna has graduated from being in training to being just in service for Kreed and lots of exciting things have happened. First, this week Kreed has begun to take the lead with Cinna- meaning he is the one holding Cinna’s leash (while still tethered to him). This has given Kreed a new sense of both confidence and independence. You see service dogs with kids with autism out sometimes and the parent normally has the leash while the child is tethered. This has never been my goal for Kreed- I always had wanted him to have the lead and feel that independence, while at the same time we know he is safe and will not bolt. Cinna is fully aware he is to stay with Kreed and he will look to me for direction when Kreed steps away from me. If I say “stay” then he won’t budge and Kreed has to remain where we are. If I say “go” then he knows he is allowed to follow with Kreed.

And as you can see here, I can walk away from Kreed at a restaurant to get drinks or pick up the food, and I know he will remain at the table with Cinna and not fear him wandering off or wonder how I will both get the food and watch Kreed at the same time.

Or Kreed can feel the independence of going to look at movies without me having to be within inches of him for fear of him bolting to another section. 

The best part of all of this is Kreed no longer bolts. Kreed used to bolt in stores or in the street with no concern for his safety. Whatever caught Kreed’s attention he would go to it. Now Kreed is safer while crossing streets because he must remain with Cinna who directly follows my verbal commands and won’t budge if cars are coming. Secondly, Kreed now must use his communication device to ask me to go to a different isle or if he saw something he wanted to go look at. So Cinna has both increased Kreed’s safety and increased his communication skills. It’s a win-win!! It’s been amazing and has decreased my stress and anxiety when taking Kreed into the community. What a sense of relief.

At home Cinna has several new jobs as well. He now will bark and alert me if he finds Kreed on the ground. Periodically Cinna will go back to Kreed’s room and “check” on him. I trained him to go back there periodically. Often times he just stays with Kreed. And he has learned that if Kreed is on the ground to bark and alert me, so then I can take his vital signs. Additionally if Kreed is upset and I am unable to get Kreed’s device safely or his medical bag to take his blood sugar level or blood pressure, Cinna is in the process of learning to get the medical bag when I ask him to, so I no longer have to leave Kreed when he is not safe, but still obtain the things I need. This again is becoming a life saver skill.

Already Cinna has always known to try and block Kreed’ self injury attempts when he is upset. If he hears Kreed’s distinctive sounds, he will automatically go to Kreed and try to sit on his lap! Then Kreed is too busy trying to get him off of him that he can’t hurt himself! Kreed also craves the pressure that Cinna’s weight can provide.

Also, when Kreed is in OT, PT or Speech, sometimes they want him to lay in certain positions like on his stomach. Kreed doesn’t tolerate those positions well and tries to get up. Cinna lays across his legs and helps to stabilize Kreed and hold him in place. This has also proved to be amazing for us.

As you can see, having Cinna has been life saving for us in a number of ways. Their relationship has grown and developed and you will often see Kreed petting Cinna while laying next to him and it’s amazing. Especially when Kreed is leading Cinna, it’s truly wonderful to watch both of them. Recently Kreed even requested to have Cinna by him on his device and he wanted to pet him. This was also a first.

It’s been an amazing two years. We have literally had Cinna since he was eight weeks old and he started out his life with us by crawling in Kreed’s lap. He is there for Kreed when he is upset, when he needs to provide stability or if Kreed just needs a friend. For a child that has difficulty communicating, calming down and being socially aware of other things or people…their bond has helped Kreed in all of these areas and we will forever be thankful for the dog that Cinna has become. Our life has improved dramatically with regards to how we can help Kreed because of him. Just check out these photos!

And...the beginning of this life long friendship...

Kreed's New Diagnosis

Kreed has been faced with many life changing events in the past year. It was about this time exactly last year that we knew something was wrong with Kreed. First it began in January...a slow decent into nonstop obsessions and tantrums. Sometimes it takes a few weeks to really notice the increase. Then one morning I was going to give him his thyroid pills for his hypothyroidism and I happened to set them on the counter instead of putting them in my hand and straight to Kreed. Then my heart stopped- both pills were the same size. In the past, one pill was always larger than the other. Fast forward an hour or two and the pharmacy admitted they had messed up his prescription and he was being doubled dosed on one of the pills and not given the other. Since his pills are compounded, they were both white, but one had always been slightly larger. I didn't notice for three weeks because that size difference doesn't seem like much when they are just in your hand. So at first, we attributed his rages to the mix up in meds and thought within a few months things would be normal.

Fast forward to the summer and his rages were out of control. I talk about this more in Kreed These Days.

By October his rages were completely gone. Replaced with one happy boy who was communicating like crazy. Kreed was active again. Kreed was happy again. We had our boy back! His level of communication was astounding and amazing and we filmed every part of it. We were so thrilled. He may have Addison's, but the medication was doing the trick and everything seemed stable.

Six weeks ago we began to notice Kreed was laying on the ground a lot. Given that Kreed is incredibly hyper- we took notice. Then a few hours at a time became ALL day. We took his blood sugar- normal. In the past that was the only thing I knew that would put him on the ground. Then a few weeks into it, we began to check his pulse- wicked fast. And so began a new kind of hell...watching Kreed lay one the ground uninterested in everything. Sometimes he had trouble breathing. I was finally able to take his pulse regularly and it was sky high. Resting was 115-130. Standing was 130-190. Everything seemed to come crashing down again. He had variable pulse, blood pressure and really spent all day wanting to do nothing.

We even took him to the hospital which is in Sickness and Communication.

Finally we were going to take him for an EMG/Nerve Conduction test. The anesthesiologist walked in and said no way after looking at him for five seconds. She saw his blood pooling, heart rate and blood pressure. Said no way could she put him under for a painful test. She wrote out everything she thought it could be and told us to get into a cardiologist ASAP. And so we did.

And found a fabulous pediatric cardiologist. He checked out his heart with an echo and talked to us for almost two hours. He diagnosed him with Dysautonomia, and more specifically POTS (Postural orthostatic tachycardia syndrome). Which basically means an intolerance to standing up! Here is the specifics:  a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. In addition his blood pressure is unstable and blood pools in his legs and cause swelling.

Finally putting a name to things made treatment options better, but the thought of it all still filled me with sadness. Knowing for a while our very hyper fun loving boy was exhausted and with little interest in activities that would fill him with excitement. Reading others perspectives was also hard because so many are exhausted just by being awake, much like Kreed. He lost a lot of his mobility from so much time on the ground and us unable to get him up to do things because it made his heart work so dang hard. We are now trying to get him moving again, even entered a bike contest to get him a much needed adult tricycle.

But just as his autism diagnosis changed his life, so has this one. Now he has to combat the mere act of standing up without feeling exhausted. Such challenges this boy has to face. Sometimes I think it's not fair. And yet, I still get glimpses of his dimples and pure smiles and adore and love him so much for the brave face he puts on. I can't imagine what it's like to live inside his body AND be nonverbal and unable to tell us how it truly is inside of him. I know he must go mad at times.

We do face this with new resolve and he has already started medication that seems to be making an impact, but he still is not where he once was. I'm sure we all wished in the past that Kreed would be less hyper. Now I take that back. Every word of it and I'm ashamed at myself for everything thinking that...given his now not as hyper state. Sometime I'm angry. Sometimes I'm sad. But now more than ever I'm determined to get him answers. Like what lies at the heart of all of this for him? Is it mitochondrial disorder? Something else in his DNA? One day I know we will find the answers. Until now we are dealt the hand we are and must find new ways to make Kreed feel better.

Raising Kreed is truly a full time job. Maybe some people would be bitter over the fact- you can't just take vacations on a whim, you are limited on the restaurants you can eat at and you can only go out to the places you want when there is respite. There is lost sleep, lost hopes, lost dreams. There's the heart ache that follows every new diagnosis. Heart ache every new symptom that overcomes him. There's fear every test he is put under on what they might find.

But then there are mornings like this

And our life is truly all about Kreed...but I don't think of it like that. I think of the challenges he has to overcome and for the most part he is a pretty damn good kid. He's not aggressive, he doesn't want to hurt others ever. He is sweet. He is kind. He has a lot to say in his head and can't say it. Sometimes I yell at him, sometimes I get angry at the things he does. But it dissipates within minutes often. Some days I might be frustrated for days over his behavior- but it comes from the fear of the unknown rather than he himself. The thing is- I would sacrifice everything for him. Gladly. Without question. He has one hell of a crappy hand in life and for him I find it incredibly unfair. I can talk, I can walk, I can stand without pain. I can write, type and communicate with others with ease. I can be independent and do things for myself. Kreed can do none of these things. He even has to ask someone to make him a meal. When I think of all of that- of course I would do anything for him. No questions asked. If I had the means, I would purchase a house on the beach and let him live the rest of his days out there, feeling the surf run over his body and watch every sunrise and sunset with pure joy. That's what he deserves. To enjoy the things in life that make him happiest because life as a whole is very unhappy for him.

So do I care that life is all about Kreed? No. He didn't have a choice to deal with everything he has. But I have the choice to make his life better. To help him in any way I can and constantly better what he can do. Do everything I can to help him communicate. And give him as much love as I possibly can and give him the things in life that do make him happy.

I'm not thrilled with his new diagnosis and way of being, but I'll be damned sure to get everything he needs to be well and feel better. We always hope for a better life for him, and we do everything possible to make it happen.

And without further ado...here is the Sensory Chewelry Giveaway!!! Two people will each receive one piece of kids companion Chewelry from Mayer-Johnson!!!Go check them out www.mayerjohnson.com. No therapy room or school room is complete without items from Mayer Johnson! Kreed has never used their chewelry however, we tried it out...and its the first chewelry he has not completely bitten through. His puppy Finley even stole it and tried to bite it and the puppy barely left teeth indents! Holy cow! It is actually now Kreed's favorite Chewelry. Couldn't believe it. So thrilled though. So bring it on!!

(Results may vary about being a "chick magnet" while wearing one, but it's highly successful for Kreed :))

a Rafflecopter giveaway

Sickness and Communication

Years ago, the thought of Kreed communicating when he is hurt or sick was basically just a pipe dream. Something we longed for, but never thought he would obtain any time soon and we were stuck just looking for signs of pain. He has had several devices, and all had a doctor or a sickness page would basically say if he is hurt, not feeling well or which body part might hurt. He's always had these pages. We've always worked on these pages. He never once told us he wasn't feeling well.

Enter the Dynavox T10. Wait, let me back up. With his old grid based devices, Kreed could basically go to a category and there is the language for not feeling well and that was that. One category to talk about sickness or pain. Also, the categories are not specific to the situations. Take for example Proloquo2go. And I'm talking about pretty much out of the box what are the choices. Notice that "call nurse button" and "braces" are in the same category. Guarantee when Kreed was sitting in the hospital he did not need to have both those in the same category but rather one in dentist and one in hospital.

Those were a few examples of the health category. And then the body parts: 

And there is not going to a yes/no screen quickly or another category quickly. 

And now here are screenshots of the health page from Kreed's old PRC. Granted the newer one might have some extra things to say, but overall, still lacks depth and if he had that device now, he wouldn't have been able to tell us as much information. 

Basically, I find the grid based page sets a giant vocabulary set. Even the old Dynavox series 5 software fell in the same trap as these. It's basically a word bank. It does not lend itself to conversations very well. Once a child masters requesting, there isn't a whole lot of places the child can go. If you look at the research, almost all the research is focused on requesting. I often wondered why, and now since having the T10 with Compass, I understand: there really wasn't much else those devices could do unless a child could type and use word prediction. And then it's a long training of teaching the kids to put strings of words together. Which is not all that easy on today's fast paced conversations when information needs to be exchanged and the kids are already severely delayed. Also add in our kids processing time, and grid based systems are not the quickest pagesets to maneuver between and have the child consistently keep what the conversation is about in their mind.

For Kreed, with his recent hospital visit, time was of the essence. Doctors and nurses are not in your room for very long and information needs to be found quickly and conveyed quickly. And he needed a variety of choices to answer questions instead of building sentences each and every time. The variety of choices also lends to him being able to convey more fully his thoughts.

Okay, NOW enter the Dynavox T10. First, some screenshots.

First Kreed can immediately tell me how he feels in his quick phrases which he often does now- he will say I don't feel well, he is uncomfortable or something hurts me- this prompts me to ask him more questions. 

He can also tell me how he feels in "my needs" 

And finally in his actual doctor page there are many options:

AND THEN, you hit topic words and it opens up even more words associated with pain or sickness: 

(There are four more pages of screenshots for this one category but I didn't want to post all of them!)

THEN, I made two pages so that Kreed could talk even quicker when a doctor came in the room:

Now, first of all, I feel even the picture quality is far superior with the T10 with Compass. Kreed could tell us if he didn't feel well, the part of his body, he could ask the doctor questions, he could respond in a variety of ways to their questions. Furthermore out of the box it had most things Kreed would come across in the hospital! I didn't have to do much extra programming other than two tab pages to put some of the things he was saying in one location for even faster communication. That took all of two minutes to make. Kreed had fast access to a huge vocabulary, questions, responses, comments and requests. Also right there on the right are his categories easily accessible and on the left, quick phrases, quick fire or even the keyboard. Everything lends itself to quickly communicating.

Here is the video of Kreed talking to his nurse at the hospital, also with myself and his mom asking questions as well so he understands. 

Here he is talking to me about how he is feeling:

This kind of communication we never thought was possible, at least in the current future or really I didn't know he would be able to be this communicative before he learned how to type independently. His ability to move between phrases, answer yes/no and answer questions directly has changed his life. And the navigation and the depth of language in the Dynavox T10 has made this possible.

I think the old consensus was that kids should build their language word by word to make the sentences and fully communicate with devices. Unfortunately, this is not always the reality with out kids who have multiple needs from severely delayed or non-existent language (but a good receptive repertoire), paired with the speed at which conversations need to happen, plus the processing time the kids need to understand what is being said and what they need to say back. With all those things taken into account- the days of building those sentences from core words or brick by brick are limited. I think more than anything, Kreed has taught us the need for outside the box thinking when it  comes to teaching nonverbal kids how to communicate.

Kreed has had the T10 for about 3-4 months, and in those three to four months he has gone from a kid who could ONLY request and answer basic questions to a kid who can ask, answer and comment on questions, make his own comments, type out some of his thoughts, answer yes/no questions independently and talk about himself and his own body. Just THREE MONTHS. He had the grid based devices for FOUR YEARS. I have now made it my duty to study these devices and try to figure out the differences so that other families can be as effective. Kreed also used to tantrum horribly when he couldn't get what he wanted. Basically if he couldn't have what he wanted, he had no other way to communicate his needs and thus a meltdown. Now, he has like a thousand ways to ask for things and our posting of videos of his arguments have become epic and well liked. Because he chooses words now instead of aggression and that is a miracle to us as well.

Here is a short history on his use of devices. There is such a difference these days. We tried in vain for years to teach Kreed to build each word of the sentence, but eventually his attention and the pace of the conversation just died. With his T10, the conversation stays alive, Kreed hears all the words being asked and he will fill in nouns or verbs as needed and he has so much more language at his fingertips.

Take for instance this video from a year ago, although Kreed did not tantrum on this video, he did shortly after. Notice the language in this video.

And here is his latest progress with arguments instead of tantrums, I think it's safe to say there is a dramatic difference in teh words that he can use to work through problems:

I am thrilled there are more opportunities for devices for kids of all ages. However, I urge families not to get complacent in thinking particular devices are the be all and end all. Do not be okay with your child only requesting but never moving past that. There is more available. There is the Dynavox T10 or Dynavox Compass on the ipad. That is the only system I have found that thinks differently. Although they offer a grid based as part of it, they still have the flat navigation to move through things. But in particular I wish I could shake hands with the people who thought of the NavBar pageset because it is revolutionary and different and I have found, more how our kids think. It solved the problems of kids not being able to communicate fast enough and effectively and more importantly allowing the kids and adults to have a voice DURING conversation.

Kreed's hospital visit proved that to me more than ever as he was able to talk about a variety of subjects with ease and shocked everyone. At the end of his stay, all the doctors were communicating directly with him, as well as the nursing staff.

To me, it's incredible. To him, he has found his voice.