Thursday, May 29, 2014

The Importance of Communication

I've re-written this blog more time than I can count. It just never seems...powerful enough. I can't seem to convey in words what communication has meant to Kreed...which is everything. This was Kreed growing up: He bolted everywhere, out of the house, in the store- anywhere and everywhere. He scaled fences and jumped in pools when he couldn't swim. He climbed everything in the house and even had a basal skull fracture when he climbed the TV and fell. He climbed swing sets and would fall from the top. He escaped out of windows and any door. No car seat kept him restrained and he once threw something that hit a gear shift and made it go into park while the car was still driving on the road. He screamed constantly with a high pitch scream. He hit, kicked, spit, threw everything, and would drop to the ground and refused to move. That was Kreed before a device. Non-stop. 

Now, this video was a year ago when he wasn't even communicating anymore and he could not get beyond just requesting with his previous devices.
This is Kreed now, just a few months ago using the Dynavox T10 which has more language than I could have ever dreamed of, and it doesn't take as much effort for him to find the words.

Can you see that? What does it make you feel? For me, it makes me want to cry- first tears of sadness for what this boy went through. When he couldn't tell us a year ago how badly he felt on the inside...and tears of joy for how he feels now- so incredibly happy to communicate. I even love when we argue! Do you know what it's like to finally be able to argue with Kreed and come to a resolution that does not involve me restraining some part of his body or praying we don't end up bleeding or bruised?

Can you imagine for one moment being this sweet boy with all these words and thoughts inside of his head and no way to get them out effectively. Relying on a simple word to convey so much: a feeling, a request, a question, a thought, a comment, a response. he can say all of that and more. 
Did you know that when Kreed first got a device at the age of 5 or 6 they wanted to just give him a big red button. Yep. That's all. A button to convey his thoughts. One button. Even though Carie and his speech therapist told them he could do more. Luckily they won the battle. But guess what happened next? Not a damn person used that device. Carie tried in vain, but no one would help her- they deemed him too behavioral. 

You know what I saw? A boy desperate to have an opinion in life. A choice. A basic human right of choice. Of language. Of having a voice. Six years passed with not a soul using his device. Six years of more meltdowns, aggression and out of control behavior. Within weeks of finding out he had a device and we started using it, hear the glee in his voice as he is using it to pick what he wants.

I just...can't convey enough about these kids who cannot use their natural voice. It doesn't mean they don't have a voice, it doesn't mean they don't have a billion thoughts running through their head and wishing to have some means to tell us. This is when I tell people at the root of all behavior is communication. Why? If Kreed could have told us what he wanted or needed, he wouldn't have had to throw, kick, hit or whatever else to try and get it. If he would tell us he wanted our attention, he would have had to hit us, throw something or whatever else to get our attention. If Kreed could tell us he wanted to escape an activity or if he didn't want to do something, he would have to have a behavior to convey that. If Kreed could tell us he was having a sensory experience, such as needing squeezes or his blanket or a massage, he wouldn't have had to try and figure out with a behavior how to get it. If Kreed could have told us he didn't feel well, we might have known quicker that something was very wrong. All of these situations- if he could have told us, there would not have been the behavior or at least a far less one. Even now, accepting the basic concept of being told used to look like this..
Or this...

Now, it looks like this...

He actually talks through it. He uses his voice and works it out with me. He cooperates with me. 

Because at the end of the day, it's not about compliance. It's not about blind obedience. It's about cooperation. I don't want him to do something just for the sake of doing something- he deserves to know why (except of course when I have decided on something and it becomes a "because I said so" haha). And he can try and negotiate all he wants- but it's the fact that he CAN negotiate with me. He CAN communicate back to me...that we come to a resolution. And that he can walk away, because he knows he asked me in every possible way and can feel some sort of satisfaction on that. Granted most of the time he huff's off...but that thrills me because it's like any teenager that was told no!

Another misconception is that Kreed just magically knew everything to say. False! We have worked incredibly hard at making sure his device is available at all times. Literally. Even when he tries to communicate with his sounds or gestures, I remind him to get his device. It is always charged and always nearby. It's in the car, in a cart at the store or around his neck. It's been on airplanes and trips and even a boat. Everywhere so that he would feel like his voice matters. Also, it taught Kreed that that was his voice to convey whatever he wanted. I have modeled for him for months on end what language to use and where or I have physically prompted him to touch certain phrases. When the medical cause to some of his rages were discovered, I began to teach him what different things meant if he didn't feel well or if he had pain- he has been given every opportunity to speak his mind. It's not a matter of convenience- it's a matter of his voice. We don't go around duct taping our children's mouths because we don't feel like hearing them talk right why wouldn't we have our child's device with them at all times in case they need to say something or we need to ask them a question? I have never understood this. As a result, we have hundreds of videos now of Kreed using his device in all situations because he literally uses it in all situations. We have even done a series of videos that are 90 seconds or less to show that sometimes all it takes is 90 seconds to hear your child's thoughts and to give them a voice. 

It has been a long road with this boy. He was as out of control as a child could be. He had no direction, his world was full of chaos. Whose world wouldn't be full of chaos when you have no voice, no choice, no way to tell the world anything and your only option is to comply or raise hell. Now we simply tell his his show others what communication can do for a child. And why I'm such a huge advocate for children having a voice, any voice, at all times, regardless of the burden to us. In fact, I challenge others to not see AAC devices as a burden or this "thing" to lug around or even this mysterious device with all these buttons. Get to know the device, spend hours yourself on it at first to learn where everything is and what everything does- because at the end of the day it's the parents, its the caregivers who will be the ones to teach the kids and adults the most on how to use the device and allow it to become their voice. We should celebrate this technology and rejoice that our kids have this available to them. And be thrilled to take this device EVERYWHERE. To finally show your child that their voice matters and that they can have a device everywhere and at any moment that they so choose.

This won't mean behaviors magically disappear. Sometimes you have to think on your in this video...
I had to do some quick editing to provide him with some different alternatives and it worked like a charm. He needed alternatives. It couldn't be all or nothing. There are so many tools available for these kids- we just have to keep trying until it works.
When he is learning to express himself waiting for food...
Or learning what to say when he has to WAIT!

Or so he can talk to me during a meal. 
None of this was easy. But he deserves a voice. He has a voice. Everyone on this earth has the fundamental human right to having a voice. Does he always likes to hear what I have to say? No. But he certainly has a right to ask whatever he wants and then also face whatever consequences. 
Again, a lot of people have thought this was easy with Kreed- that he seems so good and learns anything quickly and that he was a natural at using the device. Kreed has not been easy, it takes him a while to learn new things and he was not a natural using the device. We have even had to teach him that whatever he hit, is what he got. 

Sure, that sucked at 10:00pm at night to go back and forth to the kitchen. But guess what, just as much as I hated doing it- so did Kreed. And he learned a very important lesson that night- smarter to pick what he wanted on the first try rather than third or fourth. I've said it before- in some ways we live in Kreed's World. And that's okay. It's not like he got a choice in the matter himself. He didn't choose to be nonverbal or to have to rely on other people 100% of the time. But we can make darn sure we give him as much of a voice at possible. I guarantee the cost of me taking the few extra minutes a day is no where near the cost of Kreed not having a voice at all. When Kreed did not have a voice- it was rages. It was sadness. It was frustration. It was a hard life for all of us.
But working wicked hard to give him a voice has given us a cooperative and happy boy and a better life for all of us. 
He still has his moments- he still has trouble handling "no" at times and he still wants what he wants and he still gets frustrated when he can't find what he wants to say. But we have more awesome days than not. His autism, at this point, is the least of his problems- now it's medical. But the reason that those issues are far less these days has everything to do with communication. And the fact that he communicates everywhere and for everything. He even communicates with doctors and nurses...with pen pals that live across an ocean.

And that is our message to others. That it's not easy, but it's worth it. It's a journey and at times that journey is rough and you may get a few bruises or even bleed. But keep going. Keep fighting to give them a voice. Having a device everywhere is not an inconvenience- it's the greatest gift in the world you can give your child who cannot speak their mind with their natural voice- but must rely on us to want to give them a voice and to teach them how to use it.

All I ask is for everyone for just one day to be silent. To only follow what others want you to do and you have absolutely no opinion about it. Would you hit? Would you throw stuff? Would you try any means necessary to get someones attention to say "Hey, here I am!" We see you now Kreed and are thrilled and happy at the man you are becoming. I will never stop fighting for you or your voice.

Communication everywhere...there is no better gift you can give your child.