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.

video

video

video
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.



Wednesday, April 2, 2014

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.