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. Now...now 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 no...it 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 now...so 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 journey...show his journey...to 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 feet...like 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.

Sometimes it's about happiness

Sometimes the autism life is about happiness. Probably a weird thing to say given the challenges that all of us families face and the challenges Kreed faces in particular.

Last Monday he went in for a sleep study and it was found that he stops breathing at different times during the night. Yet one more thing this child has to battle. I about cried on the way home from the sleep study envisioning this new journey he is yet again embarking on. And all the other journey's he has been taking already that were difficult enough.

And then I was watching him watch Toy Story for the 34,976th time. And how much joy he was still getting out of Woody and Buzz and how happy he is to watch them. Let's face it, Kreed will be with us for the rest of his life, we aren't worried about independence outside of the home- with his medical issues and communication issues, his life is here at home. The independence hope ship sailed long ago. And that's okay- who wouldn't want those dimples around for life? He is my right hand man and my forever wing man. This took surprisingly a lot of pressure off of things- I know I have many, many, many years to teach this child the things he needs to know. But right now...the only thing I want for him is to be happy. Period.

He is in pain every day. He tells me. You can see it in his face. Or take one look at his legs with the blood pooling and toe curling and it's miserable. He doesn't understand what's happening to him always or why he can barely walk or why he is utterly exhausted. Yet he still gives us those amazing dimples when he smiles. Because sometimes it just about being happy.

So our focus right now is on this kids happiness, what activities can we do throughout the day that will ease his pain and make him happy. Am I going to spend hours working on whatever skill or make him sit through a few hours of home school? Nope. Off to the park we go so I can watch his eyes light up when he's swinging high. In the grand scheme of things, in Kreed's life right now he does not need to be therapied to death, or taught things ad nauseum. Right now, he just needs to experience happiness. We have time to teach him math or reading or writing. Years in fact we have. I have no time table. Kreed learns things as he needs to learn them. Before he began to lose motor function he was learning to read measurements off boxes of sugar cookies and learning some basic meal prep. But then disaster struck and his health took a turn for the worst. So would I rather him labor over learning measurements or just experience his happy smile when he sees I am making him cookies? Pretty sure I want the smile. Because it hurts for him to stand for long periods of time, it hurts for him to walk. So right now, it's about being happy.

We aren't in an emergency stage anymore. Kreed is 16 years old. I have a pretty good idea about how I want the rest of his life to go. Everyone talks about acceptance and awareness etc etc. etc. I don't get into much because I don't want to. We live with Kreed every day and try to make his life better. Period. There is nothing we wouldn't do to help him. So there is plenty of acceptance and awareness to go around. We accept how this life will go. If I could take his pain away, I would in an instance. If I could make it so he could communicate more effectively, I would do it in an instant. But we don't live in that world- we live in his world which right now consists of pain. So yes, right now we are all about making him happy.

We still work on his communication. That is a skill that does not need hours of therapy to accomplish or specific therapies or massive amounts of ABA. Why? Because his device is built into his life- it's his voice and he uses it everywhere, even when hes angry. And ABA is built into his life. Everything we do has a basis in the principles of ABA. I don't talk about it because it's just a way of life. It's not the strict shit you see on videos or when people go off talking about it. It's real, it's applied behavior analysis for real life. It's not hard to do if you understand the foundations and understand why it works and don't listen to people who give it a bad name. Kreed still has to follow certain rules that have been set up for him over his whole life to help him regulate his behaviors. But hey, if he had a great day and hes tired and in pain, I might allow him to eat bacon in his room...naked. Because- seriously, it's about being happy.

Most of all we are consistent with Kreed. When I tell him an answer, that's my answer. Period. And he knows it. I don't ask Kreed to do anything that: 1. I'm not willing to help him with or 2. I'm not willing to follow through on. So if I'm not going to make him clean up all his video, I don't ask him. I just do it. So that way he knows when I actually ask him to do it, I mean business. Okay I'm getting off topic here.

Back to his life and happiness and communication. We are always teaching Kreed- but sometimes the lessons he learns is about compassion, understanding, trust and...you guessed it...happiness. So when this boy tells me his legs hurt, I will then do everything in my power to make him feel better no matter what. If he's struggling to communicate, I will help him through it. If he is having a melt down because his body hurts, I do not get angry, but I help him through it with compassion and understanding. There is a time and a place for me to be a hard ass on him and there is a time and a place where he needs love more than anything. That time is now and that is what we shower him with. Sometimes I may lose my cool, but for the most part he deserves for me to remain calm no matter what he is doing. Because hey, right now it's about being happy.

I talk to some families and have over the years, especially when times get tough and anger flows more freely. They ask me why I stay so calm so much of the time. I tell them it's because I don't feel bad for me, I feel bad for HIM. He has to spend his life being underestimated, treated like his dumb because he doesn't communicate well and is trapped inside his head often. His body doesn't move how it should and even simple motor movements can take a long time to do. He relies on other people 100% of the time for his food, shelter, clothing etc. He can't just hop in the car and go to the store and get his food. He has to ask permission for EVERYTHING even at 16 years old. So no, I don't feel the least bit bad about myself or what I have to go through, I feel bad for the shit he has to deal with every day on a very basic human level. So when I'm up for hours at night while he's giggling or unable to fall asleep, I'm up to trying to help him settle in or make him more comfortable or I'm on google beefing up my google medical degree and figuring out what's wrong with him. When I have to wipe his floor for the 2,459th time, I feel bad for him because it's out of his control. When he is angry because he wants a food but it's 11pm at night and everywhere is closed, I feel bad for him that he has to even ask for permission or wait for somebody to do it for him. I don't get to feel bad because this kid has so much more to deal with than anyone else could possibly imagine. So, our life is about being happy.

I find the moments to revel in. Like our new puppy Finley and how much she adores him and wants to be with him. We don't know why, but even Kreed seems like her- she didn't give him a choice. I adore his face when we make foods he loves. I adore his face when he gets to go out to his favorite restaurant and all the people there that love and adore him for just being "Kreed." I love to take him places or even to the park. I love to put on his favorite movies and watch him hop with glee. I love watching him figure out new things like a remote for his TV. When Kreed asks for things I try to honor it because I know how much it sucks to have to ask for everything. Yet I do still have rules and he can't eat out every single day of his life. So instead I make sure he has fabulous food to eat at home when I have to tell him no so he doesn't get obsessed. We set up a therapy and play room just for him, and we are constantly modifying his room and that room to however it would best suit him. Life can be all about Kreed, but why not? He sees and experiences this world on such a different level and he finds joy in such simple things like Woody and Buzz for the 67895th time or even if we tell him we are making muffins today. Seriously! I think Kreed has more to teach us about life than we can ever try to teach him. My hope is that I teach him to communicate well enough to reduce his frustrations and so that he can tell the world how he feels and how damn funny and smart he is. So that he can be happy.

Autism is probably the least worrisome thing about Kreed's life. He has to fight hypothyroidism, seizures, an immune deficiency, a metabolic disorder, Addison's Disease, and now...sleep apnea. And he does it while still being able to smile like this:

And so to us, teaching Kreed boils down to life. Moment to moment. What does he need to learn in the moment. Before his sleep study Kreed learned about electrodes and what they do and what he has to wear and why. Then his sleep study went great and he didn't fight the wires or anything. He learns to read things as he needs to. He learns math as he needs to. Most of all he learns to communicate, all day, every day, in every moment- he has a voice. I truly believe because Kreed feels like he has a voice he is happier. And now, he can tell me the things that make him happy which is even better. It breaks my heart to see him in pain. It breaks my heart to know basically every day he is in pain. It breaks my heart to watch him even try to walk- and I want to scream at every doctor and beg them to just fix him so he is back to the motor function he had six months ago. Because I want this kid happy. He has to face so much in his life it's ridiculous. So I don't get to be angry at him- I get to be angry at the hand life dealt him and make sure I am a calm presence to him and understanding and compassionate. Sure, I still yell at him when needed- mostly if he's biting his hand- nothing hurts my heart more than when he tries to hurt himself. And then I take him to a safe place and play his favorite music to calm him down, bring out his device and talk it through with him and come to a resolution. That's what this is about now. Understanding, trust, compassion and communication. And having Kreed experience true happiness at every turn and how every much he wants. I owe him that. This world owes him that. So sometimes autism, medical issues or whatever...sometimes it's just about happiness.

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...