T10 Breakdown!

Well it happened. It was always going to happen. Kreed’s T10's screen flickered and I think I began to have a heart attack. After playing around with it for a few minutes, turning it on and off and then having Kreed use it again, it was pretty clear something wasn't right. Definitely something up with the video connection. Nothing else was wrong, just the screen would freeze up or get blurry every so often. (You can't tell, but its frozen and blurry a little in this picture).

(Blue/Black screen!!)

Unfortunately we did not have a protective case come with Kreed's device and it's possible he set it down too hard. Won't make that mistake again!

(Oh NO!)

However, Dynavox has a great customer service team! I emailed tech support and I received an answer in just a few hours. I filmed a short segment of what was going wrong and sent it to them. First we thought maybe steam from his shower caused the ordeal when I used it in the bathroom for the first time. However the next day we had the same issue and it was decided the video must have a loose connection or something else in the inside.

As a result they sent me a shipping label and the next day I packed it up (we had the forethought to save his original packaging so it was easy to pack up!) and shipped it out.

Probably the best thing out of all of this is that you get the companion app for free with the T10. Which means no interruption in his communication when we packed up his device. We just switched over to the app which is absolutely identical to the software on the T10. This was probably the best news and set my mind at ease. In the past when Kreed smashed the screen of his device, I bought one on eBay with a broken hard drive and then replaced the smashed screen with the second device’s nice screen!!! All because I could not have Kreed be without his voice and wasn't going to risk sending a device away!

We backed up his T10 to the cloud and then restored it on his iPad app and voila! He is communicating just the same, no problem. And any editing I do now until I get the T10 back can be backed up and put on his T10. How awesome is this???!!

So overall very positive experience - aside from the heart attack and realizing how I was chancing fate by not having a case! That was a duh moment! Our kids have autism; and autism and careful just do not go together. I'm shocked actually that Kreed has taken such great care of it!! But the tech support team at Dynavox is incredibly quick to help you and genuinely want to see your child have their voice without interruption. With the free companion app you are essentially getting two devices for the price of one, which I for one think it amazing. If he only had the Compass app, or any app, on his iPad and broke his iPad, and that was he only way he could communicate- I can't even tell you what the loss of communication would have meant to him and how dangerous it would be due to his aggression returning. This is HIS voice. Period. Not to mention, we’d probably have to buy a brand new iPad!

Overall, I had a good experience with Dynavox’s tech support and given Kreed didn’t have to lose out on a voice at all and the pretty quick turn around, I’m pretty happy. It’s not like having an ipad with an app, but having the device from an actual aug comm company where it’s their job to give kids their voice, makes it easier to work with them to fix hardware problems, versus a third party hardware company like Apple or a maker of an Android. Which is why again, I’m a huge proponent for stand alone devices and this is another reason- the software and hardware are Dynavox- so if I have a problem with either I can go to the same place. If I just had the app on the ipad, it’s two issues- one if there is a software issue I can go to the company, but if anything is wrong with the actual device, I’m stuck with whoever the device is from and throwing myself on their mercy and hoping my voice gets heard. So yippee for Dynavox and finally making a tablet!

I will blog again once we have the T10 back and a picture of whatever case we decide to get with it! That thing is like gold! But great job on Dynavox's tech support team. They have always answers my questions on their community support within a day and now I'm pleased with the hardware tech support team as well. 

More to come in a few days when the T10 is safely in our hands and Kreed will probably smile something like this:

Letters to Kreed

These seem to be flowing out of me these days. So I think Friday will be letter to Kreed day. 

Dear Kreed,

I watched you lay on the floor this week. Didn't want to get up, didn't want to do anything. My heart broke for you. I was so happy you could tell me you were just tired and nothing hurt, but damn those medical problems that take you from me. 

You can tell me now if you're hurt or if you're just tired and that is a miracle to us. Although many things are still a mystery, how you feel about everything is not. 

I don't always understand why you get stuck on certain things or why you think you have to eat out every second of the day, but I try to set limits and boundaries to help you understand this world better. It's full of chaos and uncertainty which at times is too much for your black and white thinking brain. I try to give you some order to the chaos, though I know it's so hard. I don't know why your brain wants five bags of veggie chips a day and you don't know why I only let you have three (maybe). It's hard all the way around. But we'll figure it out together. I'm sorry when I get frustrated, I'm sure it confuses you even more why I don't understand. But I love you buddy. 

I love to hear your voice. Even if it's called "Joey" on your device- to me it's just Kreed. I love how you are using your words now, even when you are so angry at me. You tell me in words and not hurt. I watch you think of new ways to ask or tell me things and I sit in wonderment. Three months ago everything was a crisis to you. Now everything is a discussion. And you my dear child, have changed our world by beginning to do that. 

I asked you to let me hear your voice and now you say things loud and proud. It's not always easy and sometimes things still hurt, sometimes I still have to protect you from yourself, but I hear you buddy. I hear you in everything and even if I am going to say no, you can ask me anything. I'm sorry when things are tough and I'm sorry when you don't get your way. But I love you through it all and when you hurt, I hurt. But right now- you are making me so incredibly proud. 

So it was hard this week; seeing you lay there with listless eyes. Seeing you find joy in nothing. Watching my heart break for you while we try to find out the new medical mystery. But thank you for giving a voice to how you feel and with that we will find answers for you. Just take my hand and we will get there together. 

Rest easy tonight and I'll see you in the morning, ready for a new days' discussion. And hope one day I can read these letters to you and you'll understand. 

Dear Kreed

Dear Kreed,

How many months have we stared at your sweet face begging you to tell us what's wrong? How many days have we wiped away your tears as the pain and frustration is too much? How many years have gone by since you've been locked up inside? I stare at you in wonderment now. Communicating. Telling us your thoughts word by word, phrase by phrase. 

I can remember laying in front of you begging for you to tell me what's wrong. Begging you to let me help you. I'm sorry I didn't know what was wrong. We had to decode your behavior and have less clues to work with than on the Medical Mysteries! How we wished you could have some words, any words, some way to tell us. 

Instead you told us through your anger, your fear and your sadness. You told us through the wounds on your hands, the bang of your head, the pounding of your feet and the tears you would cry. Your silence has been deafening. Your voice lost.

Here you are today, telling me you don't feel well. Your head hurts. Telling me your sad when you remember things in the past. Telling me your excited when you do something fun. Turning to a peer and asking her if she's seen the movies you like. Requesting anything and everything you want. Finally knowing some of your favorite songs. You've found your voice. Maybe not in the way we thought or used to want, but we hear you loud and clear now buddy. 

No more silence. No more waiting to hear your thoughts. No more wondering if we will ever know what's inside of you. You never have to go unheard again. We can hear your voice. And it's sweet, and sensitive and funny. Priceless. 

I'm sorry for all the times we've failed you, talked about you in front of you like you weren't there or ignored a communication attempt.  I'm sorry it took so long to give you a voice. I'm sorry it took so long to give you a choice in everything. And I'm sorry I didn't take your device everywhere sooner- you deserve to have a voice no matter where you are, not just when it's convenient for me. 

I'm sorry for not understanding sooner. I'm sorry so many people hurt you in your life and didn't understand you. I'm sorry some people still don't understand you and probably never will. I'm sorry for anyone that has ever treated you like you were less and I'm sorry when I can't protect you from the people that make you feel that way. I will always fight for you and fight for your voice.

I love hearing your thoughts and your voice. I'm sorry when I get mad and frustrated when you have trouble understanding why you can't have everything. It's been a long road to get to here. I will continue to walk beside you and help you and lead you anywhere you want to go. 

I'm sorry for when I will let you down in the future or lose my cool, but I promise I will make it up to you and try harder. I promise to hear your voice no matter what, no matter where we are and no matter what we are doing. I promise I won't let anyone silence you again. We hear you now and will never let that voice go silent again. 

We love you for all that you are and for who you are going to be. We love you through the silence, through the tears and pain and through your successes and happiness.  

I hope at the end of all of this, you will know how far my love goes. Here's to you dear sweet Kreed, who has finally found your voice and it is beautiful. 

Hope is a double edged sword, but we swing it wisely

There can be a lot to be said for hope. For some it pushes us to the next level, for others, it can push you down when the thing hoped for doesn't happen. Obviously when Kreed was younger it was hoped for that he would talk (with his own voice). And of course professional after professional gave false promises. It doesn't help that Kreed has regressive autism and could talk perfectly fine until he was three when his language was slowly taken away word by word and replaced by a boy who could merely grunt. Then professionals saying he doesn't know things when we have it on film that he is saying his alphabet and pointing out his body parts by age three before he lost his ability to speak. Then…hope was a bad thing. It was a thing dreams were lost on and despair was grown. Years passed with no one knowing what to do or how to get him to communicate again or even to learn again.

I am not Kreed's biological mother, but became his parent before he became a teen. Then he was a boy who threw things, kicked things, hit everyone and everything, dropped on the floor and wouldn't walk and basically refused to be in this world in any way, shape or form. So we began to work. For many hours a day, just Kreed and myself and me trying to figure out what made this boy tick. What made him act the way he does. What makes him refuse to communicate. Unfortunately for me at the time, I was missing pieces of information that might have helped me more then. If only I had seen the videos of Kreed working with “therapists” when he was five and six and the way they forced him to do everything and rarely reinforced him. Even without this information, one day it dawned on me that Kreed was very rarely given positive attention because he was so busy being naughty all of the time. I had my glimmer of hope then. I rarely shared that hope, especially to his mother Carie- she had heard so many broken promises over his life, she needed less words and more action.

That’s when our real work began. I was the praise master and very quickly Kreed figured out he got the super fun Erin when he followed my directions and we worked together rather than against each other. Very soon he was doing things no one had seen him do in years.

Fast forward five years and here we still are, closer than ever and more of a part of each other’s lives than ever and will be forever. I adore him more than anything. And our hope is now overflowing. While hope was lost he would ever speak with his voice again, new hope was regained in the form of a communication device. Push a button and magically you get what you want. Kreed surprisingly caught on to this relatively quickly, even though no one had thought to use a device with him for years. His mother had gotten one before people even knew what they were, but no professional used it with him, thinking he would not know how or that it would be irrelevant. Clearly their hope in Kreed was in the basement. I, however, was a techie nerd and jumped at the chance for Kreed to have a voice- any voice. So we began even more work.

For a long time Kreed was stuck at just asking for what he wanted and that was that. I was losing hope in his device as the long awaited savior to his many behaviors and his connection to the world. Kreed was connected to me and was my wingman in every- day life. But he still wasn’t connected on a level when the other person can communicate to you. His tears and his self- injury still communicated most of what he though. Hope became my enemy again.

Then I saw a video about Carly Fleischmann (www.carlysvoice.com). New hope arose. As I watched her explain how she felt, how she moved and rocked and hit her head- reminded me so much of Kreed. And there she was typing out thoughts in her head. I knew Kreed could do more. Sometimes your limited by the technology at the time, but I would research how other people would set up their devices, or things he might be able to say. I tried typing, but he still seemed like he could not do it (I put seem because I’ll be addressing that soon ;-)). He started to put two to three word phrases together, but it was slow moving. Hope was stalled for me again.

It was very frustrating. I KNEW…I knew without a shadow of a doubt that Kreed could communicate more. I just didn’t know the how. How could I get this sweet boy to talk to me. He loved hanging out, he loved going places- he loves everything. But he was still racked by the movements of his body, by his hidden declining health, by the anger he clearly felt by not communicating.

Then he went through his year of hell, 2013. His health was declining and a secret medical problem was slowly taking Kreed away from us again. Month by month we lost more of him. By the end of the summer he was not communicating on his device anymore. We were back to pointing and him leading us. We lost so much. He had to be kept inside all day and we could no longer go out in public because he would throw such violent tantrums it was too scary. Every day he would be thrown into rages and I had to restrain him it seemed like all day. We were all exhausted. Hope was pretty much destroyed and diminished. Gone in the wind.

When we had had enough, I took the boy to the mountains. I was too exhausted to try and protect him from himself and he was just plain exhausted. The mountains have been healing to him and he loves the feel of cool weather. So we duked it out in the mountains of Flagstaff and Sedona. We had more hours of reprieve than he did rage. And I grew a glimmer of hope again.

Once back in the valley it was doctor time. Long story short or see this blog (http://www.kreedsworld.blogspot.com/2013/12/kreed-these-days.html), Kreed’s body had ceased producing cortisol and his poor body was barely hanging on. In fact it was his rages and self-injury that kept him conscious and alive. He began the replacement medication and it seemed like overnight our boy returned. He was smiling, he was happy…he was communicating.

Hope suddenly was coming in troves, building every day as his functioning returned and we began to go out again and he began communicating again. Self-injury still remained and he could still get very angry, but we were working again.

Around the time Kreed was correctly diagnosed with his cortisol issues, Dynavox re-entered the communication device game with a tablet and an app for the app store on the ipad. Kreed had used a Maestro that had taken him far, but we were stalled. His speech therapist and I were racking our brains to try and figure out how to get him to converse. In that area, hope had diminished greatly. I downloaded the app the DAY it came out. And I bought the subscription like three days later. I was probably their first one. Because when I gave Kreed the app on my ipad with the NavBar page set, the boy giggled like you had just handed him the best thing in the whole world. It had ways to communicate I had never seen before in an app or a  device. The depth of language was far more than any app or device prior. It had everything Kreed would need to say in a situation and a thousand ways to say it. The amount of words included in even basic word lists blows every other device out of the water. The thought and knowledge contained in the device is something I would have dreamt up for him to have. And Kreed knew it. He began to use it immediately and refused to use his Maestro. Eventually he was able to get the T10, their stand alone tablet with Compass. He had a new lease on life. Hope was completely restored and grew by leaps and bounds.

Within a month of using the T10 he was speaking in phrases. Within two months he was arguing with me. Within three months he began to type his thoughts. Who knew all I needed to do was support Kreed's wrist and hand better and he could type? Is there a stronger word than hope? Because now our dreams of Kreed communicating were being realized. Finally. After thirteen years of silence we were being given slices into what he is thinking when he is mad, sad, sick or happy.

Now we wield hope like crazy because we finally know our hopes and dreams will be realized. Maybe slowly, and in his own time, but I know he will get there. I know he will continue to communicate with us and it will only get better from here. We will keep fighting to find ways for him to motor plan his typing and teach him how he can put his thoughts down. Kreed has taught me to never give that hope up but to just keep searching. Search for answers, search for ways to do things and to never, ever give up. Kreed never has, he has continued to find ways to communicate with us, even if we see it as inappropriate (like hitting me upside with a water bottle when I hadn't seen him for two weeks. That meant: I missed you!). Behavior is communicating. Kreed has been communicating all along, we just needed to pause and listen and find out what he is communicating and how he is communicating. And feel so lucky that the collective brains at Dynavox created a communication system that finally lends itself to conversing quickly and effectively.

While sometimes I wish time would move faster and I could hear everything Kreed is thinking all at once, I know he will tell us in his own time. I've waited this long to hear his voice, I can continue to be patient as he learns to do it piece by piece, phrase by phrase, word by word. I know now that all families need to have hope, even if it’s painful. While our kids don’t always communicate how we want, they are communicating all the time when we take the time to listen.

Quality over Quantity

I think some people think I work with Kreed 24/7 to accomplish his rapid progress with his device. People see videos of Kreed’s progress and everything he is learning to do. But it is not like we spend every moment of our life trying to get Kreed to communicate. Case in point: Just watched like three hours of Catfish while Kreed ate Boo Chips and watched his movies. There are many nights everyone is exhausted or need to tune the world out (thank you DVR). That’s why I try to show families sometimes all it takes is a few seconds to make such an impact on your kiddo. When Kreed comes into the kitchen, we pause the TV or whatever we’re doing and I will take the next two minutes with his device to figure out what he wants. Sometimes he gets what he wants, other times he hears the big N-O. And a mild struggle might ensue. So then I might take another five minutes to distract him and help him choose something else. All said and done, we spent about ten minutes together using his device to talk to us. Those ten minutes in the last three hours probably meant more to him than following him around and annoying the crap out of him for three hours.

Kreed often kicks me out of his room or therapy room. He’s sixteen years old and wants his space. We give him his space. And then we make sure we’re there when he wants to engage. Now granted, I will also just make the time to work on stuff. But as a whole the bulk of Kreed’s progress has come from his interests or when he presents the opportunity to us. Guarantee we make more progress by working WITH him rather than against him. That way he also knows when I put my foot down, it’s time to work!

Sometimes I feel lazy and that I need to do even more with him, especially with his new awareness. But then he politely places his hand on my back and leads me out of the room. Would I get more out of him by forcing him to engage with me, or by waiting for the right moment? At this point in his life, sometimes waiting for the right moment gives us more gold than not.

So some days, we have like ten videos posted on his various social media. Other days, we are lucky to have one. I've learned to let go a little and realize how truly remarkable his progress is even though we aren't up his butt 24/7. There’s something to be said for quality over quantity. We make out moments count. And that’s why I post short videos or simple how to’s- to make other people’s moments count. Granted when Kreed first started with his device, we did a lot more hands on work and it was more constant for him to get the idea. But he has the idea now and we let him take the wheel sometimes. He is often just like every other teenager out there- give me food and a TV and I’m good for hours! Some days he wants to be more a part of our world and other days he just wants to be chillin’! And that’s okay. He and I have many, many years to help change the face of autism. Right now I think he’s doing a damn fine job while being a teenager and enjoying his time. And I’ll stop feeling guilty that we don’t do more!

So truly, the lesson in all of this is: Quality over quantity. Working when he’s happy versus when he’s pissed (well even when he's pissed he uses his device!). And how a device can just be seamlessly integrated into a house hold, where it doesn't take over everyone’s life, it’s just accepted as Kreed’s voice and he uses it when he has something to say. His behaviors no longer speak for him, but he is now speaking for himself.