Monday, January 13, 2014

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 ( 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 (, 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.