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!

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 etcetc. Or any other three letters that are a "subtype" of AppliedBehavior Analysis (ABA). This is about using the principles of ABA all day,every day to help a teenager with autism learn to communicate with hisAlternative and Augmentative Communication (AAC) device. Over the years so many"types" of ABA have cropped up- each proclaiming to be new andimproved version. Or a mix of DTT with naturalist teaching instructions. Or whateversomeone wants to say it is. I have a news flash for all of those people- it'sALL ABA. Period. If you knew ABA inside and out, you would realize that thepoint 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" ofABA, and thus you can't just assume you can only use part of ABA with everychild you meet and expect it to work for every child. Meaning some childrenmight need some version of discrete trial, but in other situations more naturalexamples. It’s different for all kids and across skills. Rarely does a childneed one and only one approach while they learn.

Augmentativeand alternative communication (AAC) is all forms of communication (other thanyour own natural voice) that are used to communicate everything (needs, wants,thoughts, comments, responses, questions etc). In people with severe languagedelays or a lack of functional speech or any kind of speech, AAC devices areused to become their voice. These can include Sign Language (so those peeps whothink they are not using AAC by teaching sign language- this is AAC too), pictureexchange systems, switches, eye gaze or computer devices that use symbols orwords. The thing to understand about AAC devices is that it enhances speech ANDimpacts behavior. If an individual is able to communicate, they won’t have torely on maladaptive behaviors to get their point across- hence why ABA practitionersshould be all over this! I’ve learned over the years the lack of use of AACdevices through the years has more to do with experience, or lack thereof, andlimited knowledge of how to implement devices to impact people’s behaviors. Thisis why we film Kreed, this is why I write about it and why I try to advocatefar and wide for the use of communication devices by families- not just speechtherapists in a session- but for children, teens and adults to have a voice atall times, even if it is not their natural one. One more added fact about AACdevices. For those who believe that using an AAC device will cause a child toNOT speak, check out the research first. Research has shown that in fact, usingAAC device ONLY helps develop even more oral communication (Blischak, Lombardino, & Dyson, 2003, Miler et al., 2006). ABAis a science and we only use scientifically researched approaches- the proof onhow AAC devices can be implemented and help behavior and speech is right therein the research literature. For any ABA practitioner that says using AAC willhalt any kind of oral speech or impede progress in using their natural speech-you are giving false information and perhaps limiting an individual’s progressby not knowing the research. Shame on ABA practitioners who do this because youare also not disseminating correct research and telling families the exactopposite of what sound scientific research has shown.

At home with Kreed you will see us use ABA all the time, all day, in everysituation. Just like his use of his AAC device. The reason we are successfulwith his AAC device is because we use the principles of Applied BehaviorAnalysis to teach him the language of the device. WeMODEL language for him, we PROMPT him to use the language, and weREINFORCE his correct use of his device. We reinforce this mainly by eitherrespecting the words he says, by delivering the item he chose with hiscommunication, by or engaging in conversation.

With every behavior Kreed exhibits, we try to determine the function (which isjust a fancy way to say we figure out why he’s behaving the way he is- is it awant/need, sensory, attention, escape/avoidance or automatic?). Once weknow that, we generally replace it with language to help him navigate thesituation. For instance- his current obsessive issues. While most would thinkit's x, y or z, for Kreed it's actually a medical reason causing hisobsessiveness. In reaction to not getting his obsession he tends to bitehimself. So we block his biting attempts and then give him new language. We areresponse 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 heargues to death on his device. But that's the wonderful thing- we replace hisbehavior with words on his device. We constantly redirect him to using hisdevice. 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. Andwe 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 useof his device which he uses his hands for- and he does not use his hands tobite, since they are busy talking to us.

Wealso have clear goals for Kreed. We don’t work on everything at once or everyonewould be crazy with it. We normally target a few activities for Kreed to besuccessful with at a time, work on them until he masters them, and then moveon. For instance, right now we are working increasing his attention to taskswith playing games. Kreed’s skills have grown by leaps and bounds and he isfinally at the point where he is ready to learn new games rather than justmovies. So we are using a token economy system (the tokens are actual cashhaha- can’t get more natural of a reinforcer than that) and as he completes andactivity 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. Currentlyhe needs many verbal and physical prompts to complete activities. It’s masteredfor us when he can complete the activities without assistance to completion.Again ABA at its finest. His secondary goal to the activities is using activitybased language on his device. We don’t just play games with Kreed and expecthim to silently interact and just complete them and be done with it. Our actualpoint is to increase his language on his AAC device.  So we always have his device available and then first weMODEL the language we expect him to say depending on the situation, and invite him to also communicate on his device, from my model or whatever else he wants to say. This is how it works for most situations, wemodel and prompt and then over time we gradually reduce the model/prompt until he is commenting on his own. ABA and AAC working together hand in hand,just as it should be.

Thisis also why I don’t understand why more behavior analysts don’t embrace AACtechnology, why more speech therapists and behavior analysts don’t worktogether. Our job is to impact the children’s behavior, to turn themaladaptive to appropriate behavior and to either develop new skills or improvecurrent 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 olderkids with autism or adults where the technology was not available at the timeof early intervention. Why should I ever expect a child to just “comply” withwhatever it is I want to do, without the individual having a choice in thematter? Just because they are nonverbal, does not mean they don’t want to beheard. It does not mean they don’t have feelings and thoughts going on in theirhead. As a result of being unable to speak with their natural voice, theyare the unheard voices in our communities. They are the students and clientsjust expected to do as they are told and when they refuse, they are labeled asnon-compliant. I have a newsflash to people who label individuals who arenonverbal 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 areleft in this chaotic world with the choice to follow what everyone tells themto do, or refuse to do it and face the consequences.

Kreedwas labeled non-compliant for years and years. He never had a voice or achoice. Now when you hear him “talk,” it’s amazing to watch the wheels turn inhis head and the things he thinks of, just to have a voice, just to have achoice. Choice in life is a fundamental human right, it’s not an action onlyfor those that use their natural voice to speak. We should be working muchharder to give children, teens and adults a voice. Much harder. Kreed’s casealone has taught me this and countless others. I welcome my arguments withKreed because it means he has a voice and he is using it. It means he does nothave 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 toimprove his life on his own and not rely on others 100% of the time.

Andspeaking of non-compliance: Practitioners need to get rid of the archaiclanguage based on the word compliance. It should be COOPERATION not COMPLIANCE.I refuse to have individuals comply, I want them to cooperate. Cooperatedenotes that we are working together to goals. Compliance denotes a powerstruggle and a power hierarchy that says I have more say than you and you havenot right to any other choice. It is this kind of language that leadsindividuals 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.

Thisis also where the marriage of ABA and AAC falls apart.  To be successfulin implementing an AAC device, the foundation has to be cooperation notcompliance. The device is THEIR voice. I don’t have a right to tell themexactly how to use it or refuse to accept their words. Just as I would neversilence an individual who uses their natural voice, I would never silence andindividual who needs a device to communicate. That means for every meltdown,tantrum, every learning opportunity or any other time- that device needs to bepresent. ABA could be the basis for teaching so many to have a voice using AACand from a young age. I would rather have a child learn to talk back to meduring a session with a device, then just sitting there waiting for what isnext, but not being able to help decide or have a say in anything.

Weimpacted Kreed’s behavior by using AAC. When we used to tell him he couldn’t goto five guys (if he brought us the picture card, or anything that looked likecheckers because that’s what the walls there look like), it would be the end ofthe world. Biting, hitting, yelling, and throwing himself on the ground. Hecouldn’t cooperate with us. He couldn’t negotiate. Now with his device, wemight say no, and he might then ask us a thousand more ways (Five guys is myfavorite restaurant. Are we going to five guys? I love it.. I love Frenchfries. Can we go? Among others ha), and the answer may still be no so then wegive 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. Thefact of the matter is, he is TALKING to us, rather than getting angry. Or he istalking to us while he is angry but he’s not hurting himself. As a result ofbeing able to talk through his frustrations, his behaviors have lessenedsignificantly. And we didn’t have to come up with fancy charts, or variousreinforcement systems or timers or any other more complicated procedures thanjust 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: 

Thisblog is both about how ABA can be used successfully with individuals who useAAC, 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 thatthey should be allowed a voice and a choice in life, just as those who have theirnatural 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.