Tuesday, August 26, 2014

10 Simple Rules for Working with my Child


Dear Therapist, Teacher, Aid, etc,
You are starting treatment or teaching my child. There are just a few small things you need to know before you begin working together. 

1. My child has no limits. There is nothing he can't do or nothing we can't adapt for him to do. If he is not doing something, it is a result of your teaching methods, ability to motivate or lack of creativity. Teach to him, do not have him learn to you. If you take this approach, I guarantee you will be successful in some way. 
2. If I tell you he can do something, and even film it for you, but you say he can't or he cannot generalize to you- again- see #1. If I can get him to do it, then you either have a failure of motivation or he just doesn't like you. In the event of the latter, I wish you luck. 
3. Find what motivates my child. And listen to me if I tell you what he likes and what motivates him to do things at home. I am with my child 24/7, you are not. If what works for me doesn't work for you, then find something. Do this before you ever begin to work. It will go better for the both of you. 
4. Repeat after me: tell me and I forget, teach me and I remember, involve me and I learn. Pay attention to the last part. That is how my child will learn- involve him, show him why it matters. Otherwise, good luck to you.
5. My child will say no to you and that's okay. Then there is room to negotiate. And if you are negotiating that means he is using language! As his parent, the fact that he can argue with you is a wonderful thing. Keep working it. 
6. We believe on cooperation not compliance. If you decide to use compliance as your word choice- again, good luck to you and we won't miss you. My child knows how to cooperate with others and find common ground and learn from you. He is not taught to blindly do what you tell him without the ability to say no, or question why he has to learn it. 
7. My child has a voice and he uses it. Deal with it. We have worked our whole life for him to have a voice. You will not ever decide his opinion on something. Ask him. If you decide to talk for my child, I will invite (or force, whichever must be done) you to duct tape your mouth shut for an entire 24 hours and let other people speak for you and make all your decisions. Then let me know how that feels.
8. Do not talk about him in front of him. He may not always choose to speak, but he certainly has ears to hear and a brain to understand. If you decide to do this, I will have a conversation about you, in front of you and let you feel how it feels.
9. Respect my child and he will respect you. You do not need to talk to him like he is hard of hearing or far below his age. He's a human being and deserves to be treated with respect and dignity. If I hear you talk down to him, again, good luck to you (and by now I hope you've figured out what that means). 
10. You are with my child for an hour, maybe a couple hours or half a day. I am with my child 24 hours, 7 days a week. Do not talk down to me either or good luck to you. I have to hold strong even at 3am and he decides it's time to get up after 3 hours of sleep for me- while you sleep comfortable in your bed at him for your 6-8 hours of sleep a night. When we discuss goals- make them functional for his life at home with me- not just your hour or two hour session. I need to know what works even when we are all bone dead tired or stressed to the max or when we have some down time to cuddle. Until you know what it like to be with my child 24/7, don't ever assume your way is best or think I "should" have done something. Cooperation is the key word here. Or good luck to you. 
This is just a note to let you know the rules for working with my child, but with us as a family. I will never tolerate anyone treating him like he is less than or that he can't do something. If you do not have the #nolimits philosophy, then we won't be able to work well together. Challenge yourself to find what works for him. Teach to him instead of learning to you. Learning never stops. 

In the end I think you will find he is smart, funny, kind and a riot to be with. It's not hard to teach my child if you hear his voice, treat him with respect and involve him in learning. There can be so much fun in therapy when the focus is on cooperation and learning for life. I hope you enjoy working with him as much as we enjoy raising him. If you have any questions- ask him or ask us- we've been doing this a long time with him and we will continue to be doing this for a long time with him. 
 
 
 
 
 


Friday, August 1, 2014

#NOLIMITS

This project started with Kreed breaking through so many limitations others set for him and our philosophy that he has #nolimits Then I invited individuals and families to send in their photos of their children or adults defying the odds and showing the world that though they may face more obstacles and challenges than most, ultimately they have #nolimits Please share and raise awareness for special needs and prove to everyone how special these individuals and families are for defying the odds. Thank you to everyone who sent in photos I hope this has touched you just as it has touched me. And special thanks to The Script for recording such an amazing song.

"Superheroes"
All the life she has seen
All the meaner side of me
They took away the prophet's dream for a profit on the street

Now she’s stronger than you know
A heart of steel starts to grow
All his life he's been told
He’ll be nothing when he’s old
All the kicks and all the blows
He won't ever let it show
'Cause he's stronger than you know
A heart of steel starts to grow
When you've been fighting for it all your life
You've been struggling to make things right
That’s how a superhero learns to fly

Every day, every hour
Turn the pain into power
When you've fighting for it all your life
You've been working every day and night
That’s how a superhero learns to fly

Every day, every hour
Turn the pain into power

All the hurt, all the lies
All the tears that they cry
When the moment is just right
You see fire in their eyes
'Cause he’s stronger than you know
A heart of steel starts to grow

When you've been fighting for it all your life
You've been struggling to make things right
That’s how a superhero learns to fly
Every day, every hour
Turn the pain into power
When you've fighting for it all your life

You've been working every day and night
That’s how a superhero learns to fly
Every day, every hour
Turn the pain into power
Every day, every hour
Turn the pain into power
Every day, every hour
Turn the pain into power

She's got lions in her heart
A fire in her soul
He's a got a beast in his belly
That's so hard to control
'Cause they've taken too much hits
Taking blow by blow
Now light a match, stand back, watch them explode

She's got lions in her heart
A fire in her soul
He's a got a beast in his belly
That's so hard to control
'Cause they've taken too much hits
Taking blow by blow
Now light a match, stand back, watch them explode

When you've been fighting for it all your life
You've been struggling to make things right
That’s a how a superhero learns to fly
Every day, every hour
Turn the pain into power
When you've fighting for it all your life
You've been working every day and night
That’s a how a superhero learns to fly

Every day, every hour
Turn the pain into power

Oh, yeah...
Every day, every hour
Turn the pain into power

Ooh, yeah
Whoa

Every day, every hour
Turn the pain into power
When you've been fighting for it all your life
You've been struggling to make things right
That’s how a superhero learns to fly

Thursday, July 17, 2014

Disconnected

Sometimes, every once in a while, I feel disconnected from Kreed. I can't even really explain it in words. There are some times he has conversations quite frequently on his device, then other times, it's only requesting again. These times make me more sad than frustrated. When you look at Kreed, you know there is so much he wants to say. I'm always searching how to give him more language, better language.

Most of the time, these times come when his medical issues are at their worst. It often seems he has to conserve so much energy just to feel well, that it doesn't leave a lot left for anything else. I wish I knew how to make him better. I wish I knew how to ease his pain. Instead we just wait- wait for doctors, wait for tests, wait for health. Meanwhile I watch him continue to lose function in his hands- the peripheral neuropathy is getting worse. He now rarely wants to use his left hand- it's constantly doing the pill rolling motion like it's alseep and he's trying to wake it up. Since his hands ARE his VOICE...it makes him harder to use his voice. That fact alone makes me want to cry at night after he's gone to bed. We worked so hard to give him a voice, only to have various medical issues try and take that voice away.

I hate feeling disconnected from Kreed. It's an odd feeling. Almost like part of me is gone too. I spend so much time with him and working with him and talking to him and anticipating what he needs and figuring out when something is wrong- that when he moves away from me and goes into himself, there are some empty spaces within myself.

Normally times like these prompt me to give him new language on his device. Which is exactly what I'm going to do- try to find new language or more language to make help pull him out of his shell and talk to me more. Every since he found his voice, I don't like the silence. He will also tend to perseverance on certain things like food. Whenever we feel stuck- I always go back to one fact: the more language we give him, the more connected he becomes to us.

I would do anything for Kreed and give anything to him...right now I need to find even more language for him and hope he can find his way back to his voice and communicating more. I feel heartbroken when I don't hear his arguments or his thoughts and how he feels. We live in Kreed's World, but I don't like it when he begins to shut everyone out from joining him. I'm sure more videos will come as we go through this next process of finding more language and more ways for him to say what he thinks, model it for him and watch him enjoy communicating again!


Tuesday, July 8, 2014

ABA and AAC

From my professional blog Something To Say AAC www.somethingtosayaac.com

This is not about DTT. This is not about PRT. This is not about NET etc etc etc. Or any other three letters that are a "subtype" of Applied Behavior Analysis (ABA). This is about using the principles of ABA all day, every day to help a teenager with autism learn to communicate with his Alternative and Augmentative Communication (AAC) device. Over the years so many "types" of ABA have cropped up- each proclaiming to be new and improved version. Or a mix of DTT with naturalist teaching instructions. Or whatever someone wants to say it is. I have a news flash for all of those people- it's ALL ABA. Period. If you knew ABA inside and out, you would realize that the point of ABA is so that children learn naturally. If you are good at ABA- that should be your goal in the first place! When anyone decides one one "type" of ABA, you are then possibly only using "part" of ABA, and thus you can't just assume you can only use part of ABA with every child you meet and expect it to work for every child. Meaning some children might need some version of discrete trial, but in other situations more natural examples. It’s different for all kids and across skills. Rarely does a child need one and only one approach while they learn.
Augmentative and alternative communication (AAC) is all forms of communication (other than your own natural voice) that are used to communicate everything (needs, wants, thoughts, comments, responses, questions etc). In people with severe language delays or a lack of functional speech or any kind of speech, AAC devices are used to become their voice. These can include Sign Language (so those peeps who think they are not using AAC by teaching sign language- this is AAC too), picture exchange systems, switches, eye gaze or computer devices that use symbols or words. The thing to understand about AAC devices is that it enhances speech AND impacts behavior. If an individual is able to communicate, they won’t have to rely on maladaptive behaviors to get their point across- hence why ABA practitioners should be all over this! I’ve learned over the years the lack of use of AAC devices through the years has more to do with experience, or lack thereof, and limited knowledge of how to implement devices to impact people’s behaviors. This is why we film Kreed, this is why I write about it and why I try to advocate far and wide for the use of communication devices by families- not just speech therapists in a session- but for children, teens and adults to have a voice at all times, even if it is not their natural one. One more added fact about AAC devices. For those who believe that using an AAC device will cause a child to NOT speak, check out the research first. Research has shown that in fact, using AAC device ONLY helps develop even more oral communication (Blischak, Lombardino, & Dyson, 2003, Miler et al., 2006). ABA is a science and we only use scientifically researched approaches- the proof on how AAC devices can be implemented and help behavior and speech is right there in the research literature. For any ABA practitioner that says using AAC will halt any kind of oral speech or impede progress in using their natural speech- you are giving false information and perhaps limiting an individual’s progress by not knowing the research. Shame on ABA practitioners who do this because you are also not disseminating correct research and telling families the exact opposite of what sound scientific research has shown.
At home with Kreed you will see us use ABA all the time, all day, in every situation. Just like his use of his AAC device. The reason we are successful with his AAC device is because we use the principles of Applied Behavior Analysis to teach him the language of the device. We MODEL language for him, we PROMPT him to use the correct language, and we REINFORCE his correct use of his device. We reinforce this mainly by either respecting the words he says, by delivering the item he chose with his communication, by or engaging in conversation.

With every behavior Kreed exhibits, we try to determine the function (which is just a fancy way to say we figure out why he’s behaving the way he is- is it a want/need, sensory, attention, escape/avoidance or automatic?). Once we know that, we generally replace it with language to help him navigate the situation. For instance- his current obsessive issues. While most would think it's x, y or z, for Kreed it's actually a medical reason causing his obsessiveness. In reaction to not getting his obsession he tends to bite himself. So we block his biting attempts and then give him new language. We are response blocking and replacing the behavior with language. ABA at its core.

We are also consistent. Once we give Kreed an answer- that's it. Even when he argues to death on his device. But that's the wonderful thing- we replace his behavior with words on his device. We constantly redirect him to using his device. Because guess what? If he's pressing buttons on his device and arguing, that behavior is incompatible with biting or hitting his head on something. And we praise him highly for using his device. So in ABA speak we are doing a DRI- differential reinforcement of incompatible behavior. We are reinforcing the use of his device which he uses his hands for- and he does not use his hands to bite, since they are busy talking to us.
We also have clear goals for Kreed. We don’t work on everything at once or everyone would be crazy with it. We normally target a few activities for Kreed to be successful with at a time, work on them until he masters them, and then move on. For instance, right now we are working increasing his attention to tasks with playing games. Kreed’s skills have grown by leaps and bounds and he is finally at the point where he is ready to learn new games rather than just movies. So we are using a token economy system (the tokens are actual cash haha- can’t get more natural of a reinforcer than that) and as he completes and activity or a chore at home, he earns a dollar. When he gets to five dollars, he gets to go to Five Guys or choose to save it for something else. Currently he needs many verbal and physical prompts to complete activities. It’s mastered for us when he can complete the activities without assistance to completion. Again ABA at its finest. His secondary goal to the activities is using activity based language on his device. We don’t just play games with Kreed and expect him to silently interact and just complete them and be done with it. Our actual point is to increase his language on his AAC device.  So we always add vocabulary specific to his games or chores when the time come and then first we MODEL the language we expect him to say depending on the situation, then we PROMPT him to use the language. This is how it works for most situations, we model and then we prompt and then over time we gradually reduce the prompt until he is commenting on his own. ABA and AAC working together hand in hand, just as it should be.

This is also why I don’t understand why more behavior analysts don’t embrace AAC technology, why more speech therapists and behavior analysts don’t work together. Our job is to impact the children’s behavior, to turn the maladaptive to appropriate behavior and to either develop new skills or improve current skills. All of this can be done with AAC. We have the technology NOW. Yet not everyone uses it for these kids who are nonverbal- particularly older kids with autism or adults where the technology was not available at the time of early intervention. Why should I ever expect a child to just “comply” with whatever it is I want to do, without the individual having a choice in the matter? Just because they are nonverbal, does not mean they don’t want to be heard. It does not mean they don’t have feelings and thoughts going on in their head. As a result of being unable to speak with their natural voice, they are the unheard voices in our communities. They are the students and clients just expected to do as they are told and when they refuse, they are labeled as non-compliant. I have a newsflash to people who label individuals who are nonverbal non-compliant: refusing to do activities is the ONLY voice they have. It is the ONLY way they are able to assert choice. Without language, they are left in this chaotic world with the choice to follow what everyone tells them to do, or refuse to do it and face the consequences.

Kreed was labeled non-compliant for years and years. He never had a voice or a choice. Now when you hear him “talk,” it’s amazing to watch the wheels turn in his head and the things he thinks of, just to have a voice, just to have a choice. Choice in life is a fundamental human right, it’s not an action only for those that use their natural voice to speak. We should be working much harder to give children, teens and adults a voice. Much harder. Kreed’s case alone has taught me this and countless others. I welcome my arguments with Kreed because it means he has a voice and he is using it. It means he does not have to do exactly what we say (well, if I say no, it's still no ha, but he can at least try to negotiate a better position), but he has room to negotiate and to try to improve his life on his own and not rely on others 100% of the time.

And speaking of non-compliance: Practitioners need to get rid of the archaic language based on the word compliance. It should be COOPERATION not COMPLIANCE. I refuse to have individuals comply, I want them to cooperate. Cooperate denotes that we are working together to goals. Compliance denotes a power struggle and a power hierarchy that says I have more say than you and you have not right to any other choice. It is this kind of language that leads individuals who are nonverbal to continue to not have a voice.
There is such a vast language difference between the two words. 
In Compliance it even mentions the words "conformity" and "coercion." That's awfully powerful language to be using on kids and once again highlights the magnitude of the word. 

But this word:
Denotes a more positive word and more descriptive to what we are actually trying to accomplish with these kids! If we were to use cooperation over compliance, it would improve our teaching abilities because we will be attempting to learn to teach better so that the children we are working with will cooperate with the task at hand. It also allows for dialogue rather than strict obedience. Aren't we trying to get the children to have joint attention and joint actions! Our goal should be COOPERATION not COMPLIANCE. Period.

This is also where the marriage of ABA and AAC falls apart.  To be successful in implementing an AAC device, the foundation has to be cooperation not compliance. The device is THEIR voice. I don’t have a right to tell them exactly how to use it or refuse to accept their words. Just as I would never silence an individual who uses their natural voice, I would never silence and individual who needs a device to communicate. That means for every meltdown, tantrum, every learning opportunity or any other time- that device needs to be present. ABA could be the basis for teaching so many to have a voice using AAC and from a young age. I would rather have a child learn to talk back to me during a session with a device, then just sitting there waiting for what is next, but not being able to help decide or have a say in anything.
We impacted Kreed’s behavior by using AAC. When we used to tell him he couldn’t go to five guys (if he brought us the picture card, or anything that looked like checkers because that’s what the walls there look like), it would be the end of the world. Biting, hitting, yelling, and throwing himself on the ground. He couldn’t cooperate with us. He couldn’t negotiate. Now with his device, we might say no, and he might then ask us a thousand more ways (Five guys is my favorite restaurant. Are we going to five guys? I love it.. I love French fries. Can we go? Among others ha), and the answer may still be no so then we give him more choices, “We can’t go to five guys right now, do you want to do…” and then he can make more of a choice or decide to talk to us more etc. The fact of the matter is, he is TALKING to us, rather than getting angry. Or he is talking to us while he is angry but he’s not hurting himself. As a result of being able to talk through his frustrations, his behaviors have lessened significantly. And we didn’t have to come up with fancy charts, or various reinforcement systems or timers or any other more complicated procedures than just teaching him to communicate to us on an AAC device. 
Prior to becoming conversational on his device, where he could only say wants and needs but still lacked back and forth language, this was also his behavior if he just brought us a picture of what he wanted:

With the RIGHT device and implementing his device in all situations: 
This blog is both about how ABA can be used successfully with individuals who use AAC, but it’s also about a call to arms for individuals who are nonverbal. Realizing it should be about cooperation and not blind obedience. Ensuring that they should be allowed a voice and a choice in life, just as those who have their natural voice are afforded that ability anytime they want to voice it. 
- Erin Polk

For videos to see ABA and AAC in action please visit Kreed's FB, Blog or youtube. 
www.facebook.com/kreedsworld
www.kreedsworld.blogspot.com
www.youtube.com/kreedsvideos

More posts on ABA and AAC will follow including Assessment and using verbal behavior principles to help AAC language!

For more research on AAC and the impact it has on communication and language, check out this list from PRAACTICAL AAC:

Ganz, J.B., Earles-Vollrath, T.L., Heath, A.K., Parker, R.I., Rispoli, M.J., & Duran, J.B. (2012). A meta-analysis of single case research studies on aided augmentative andResearch Reviews Supporting the Use of AAC alternative communication systems with individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42,1, 60-74.

McCarthy, J., & Light, J. (2005). Attitudes toward individuals who use AAC: Research review. Augmentative and Alternative Communication, 21(1), 41-55.

Millar, D. C., Light, J. C., & Schlosser, R. W. (2006). The impact of AAC intervention on the speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language, and Hearing Research , 49(2), 248-264.

Schlosser, R. W., & Blischak, D. M. (2001). Is there a role for speech output in interventions for persons with autism? A review. Focus on Autism and Other Developmental Disabilities, 16(3), 170-178.

Schlosser, R. W., & Sigafoos, J. (2006). Augmentative and alternative communication interventions for persons with developmental disabilities: Narrative review of comparative single-subject experimental studies. Research in Developmental Disabilities, 27(1), 1-29.

Schlosser, R. W., & Wendt, O. (2008). Effects of Augmentative and Alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology, 17(3), 212-230.

Tien, K.C. (2008). Effectiveness of the Picture Exchange Communication System as a functional communication intervention for individuals with autism spectrum disorders: A practice-based research synthesis. Education and Training in Developmental Disabilities, 43(1), 61-76.

Tuesday, June 10, 2014

The Unglamorous Part of the Autism Life

I'm tired. Not the kind of tired I felt years ago after pulling all-nighters. Not even the kind of tired now if I get less sleep. The bone weary kind of tired that you feel in every inch of your body. But not even that kind of tiredness can stop me from giving my all to Kreed. So I thought I would do a quickie blog post on our nightly routine- the routine AFTER Kreed is in bed.
Putting Kreed to bed is a chore in itself. First, check his blood sugar- need to know where he is at. If he is under 100, we feed him. Even if it's 11 o'clock at night. That gives him the best chance of waking up with okay blood sugar levels. But even then it's not guaranteed. Then it's putting all the pups where they go, two in the kennel and Finley in his room with him because that's what she wanted ha. Then I make sure Kreed's bed is comfortable for him and I start the movie he will watch until he falls asleep.

Then I go into his bathroom and assess if it needs cleaning. Kreed is fully potty trained, but he's a boy and often times if he goes Number 2, Number 1 ends up on the floor in front of the toilet. And since I don't always know when he goes, it's clean up time. So, I clean his bathroom pretty much every night before he goes to bed. No ever talks about some of the massively fun parts of potty training and when they become teenagers! I also go around and gather whatever clothes are strewn throughout the house from one time or another. Since it gets to be 110+ degrees here every day for the next five months, Kreed will often strip on his side of the house. He has learned pretty much to keep it in his room, but he will get new underwear or shorts to put on if he ventures out, so often there are several pairs laying in different places. Each must then pass a smell test to determine if he only wore it for a few minutes, or a few hours. He's a teenage boy, so it's easy to tell!

Then, I gather his ipad and plug it in to charge over-night. Then I grab his device and we do our bedtime talking. Then I take that and plug it in to charge over-night. Let's see...straighten up the kitchen and Kreed's area. I clean up his stuff that needs cleaned up like movies or toys- unless we are currently targeting some kind of clean up thing- then I grab him and he works on it. Yep, that's right, at 11pm at night or whenever. If it's his job and we decided on him working on it- it gets done regardless of the time. We like to keep him responsible and he does best if we follow through on whatever we decide it's time for him to learn to do. Oh, and I make him pee before bed. Emphasis on MAKE. I don't care if I knew he peed an hour ago. He will pee before bed. Kreed knows this. In the past, I've sat in a chair in his bathroom and told him to go pee for forty five minutes straight. Those were long nights. Now he KNOWS. And you can actually see him trying to push the pee out. I don't care how little pee comes out- he WILL pee before bed. That makes life easier for all of us. 

Did I mention this is all late at night- because he is a teenager and he doesn't go to bed until 11/12am. What is great is he's had 16 years of practice for the bedtime routine- once he is in his room, he stays. So he goes in about 11. We have to wake up at around 3am to put his BIPAP machine on. It's some long nights right now while he is learning that. 

Then after running through the giant checklist in my head, I have to think about my next morning while Kreed is sleeping. Do I have anything due in school? (Finishing Master's degree). Do I have anything I need for work in the morning? Then I think about notes to leave- call his neurologist? Does he need any refills on his medication? Do we need to pick anything up tomorrow? Anyone else to call? Any appointments? The list is endless.

Then, I make sure his BIPAP machine is working and ready to go for when he falls asleep.

Then and only then do I finally ready myself for bed. Or like tonight, write this short blog. Sure, I could leave everything for the next day- but let's face it- you never know whats coming the next day. I at least know what I can take care of before bed without interruption. In the morning- Kreed could wake up early, he could crash from low blood sugar and go into a rage- any number of things could happen. I want the next day to start fresh and ready to go, rather than scrambling around or trying to clean while Kreed is wanting to bite himself from low blood sugar issues.


All of this can eventually make you bone weary tired. But we do it every day and every night and every morning because it's not like he was given a choice for it to be like this. So we give him every opportunity to be successful, which includes starting each day off right and ready to go- and that means prepping the night before. Sure, some nights we are too tired to do jack shit. No joke. And then I hate myself the next morning when I look at his ipad and realize I didn't charge it. You pretty much make that mistake one time haha.

But these are the un-glamourous parts of the autism life. The cleaning up pee from the bathroom floors or splatter on the seat (you do NOT want to sit on that seat in the middle of the night not cleaned), finding clothes throughout the house, and cleaning while he's ready for bed because it's the first chance you've had to tidy all day. And then there is the moment you remember what you had wanted to do, like cut his toe nails. Sigh. That is what I'm remembering right now. Goes on the list for tomorrow! See what a blog- toe nails and pee on the bathroom floor. But hey, this is shit is real.

In the end though, this is our normal. The anti-normal. We accept that this is the life. With that acceptance, it leaves no room for anger and resentment. Without the anger and resentment we are free to focus on the things that really matter. And most of all, it allows us to keep moving, keep improving, keep him learning and gaining independence.

Are we tired some days to the point we can barely function? Absolutely. We take those days as they come and deal with them. Then we go back to the routines and teachable moments. More than anything, we just keep going.


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. 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.

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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.