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.

Saturday, March 15, 2014

Update on Cinna and Kreed's story

Cinna’s training has continued to progress and I thought it was time for an update on Cinna and Kreed. I last wrote about Kreed’s service dog Cinna in July 2013, click here: Service Dog.

Since then, Cinna has graduated from being in training to being just in service for Kreed and lots of exciting things have happened. First, this week Kreed has begun to take the lead with Cinna- meaning he is the one holding Cinna’s leash (while still tethered to him). This has given Kreed a new sense of both confidence and independence. You see service dogs with kids with autism out sometimes and the parent normally has the leash while the child is tethered. This has never been my goal for Kreed- I always had wanted him to have the lead and feel that independence, while at the same time we know he is safe and will not bolt. Cinna is fully aware he is to stay with Kreed and he will look to me for direction when Kreed steps away from me. If I say “stay” then he won’t budge and Kreed has to remain where we are. If I say “go” then he knows he is allowed to follow with Kreed.
And as you can see here, I can walk away from Kreed at a restaurant to get drinks or pick up the food, and I know he will remain at the table with Cinna and not fear him wandering off or wonder how I will both get the food and watch Kreed at the same time.
Or Kreed can feel the independence of going to look at movies without me having to be within inches of him for fear of him bolting to another section. 
The best part of all of this is Kreed no longer bolts. Kreed used to bolt in stores or in the street with no concern for his safety. Whatever caught Kreed’s attention he would go to it. Now Kreed is safer while crossing streets because he must remain with Cinna who directly follows my verbal commands and won’t budge if cars are coming. Secondly, Kreed now must use his communication device to ask me to go to a different isle or if he saw something he wanted to go look at. So Cinna has both increased Kreed’s safety and increased his communication skills. It’s a win-win!! It’s been amazing and has decreased my stress and anxiety when taking Kreed into the community. What a sense of relief.
At home Cinna has several new jobs as well. He now will bark and alert me if he finds Kreed on the ground. Periodically Cinna will go back to Kreed’s room and “check” on him. I trained him to go back there periodically. Often times he just stays with Kreed. And he has learned that if Kreed is on the ground to bark and alert me, so then I can take his vital signs. Additionally if Kreed is upset and I am unable to get Kreed’s device safely or his medical bag to take his blood sugar level or blood pressure, Cinna is in the process of learning to get the medical bag when I ask him to, so I no longer have to leave Kreed when he is not safe, but still obtain the things I need. This again is becoming a life saver skill.
Already Cinna has always known to try and block Kreed’ self injury attempts when he is upset. If he hears Kreed’s distinctive sounds, he will automatically go to Kreed and try to sit on his lap! Then Kreed is too busy trying to get him off of him that he can’t hurt himself! Kreed also craves the pressure that Cinna’s weight can provide.
Also, when Kreed is in OT, PT or Speech, sometimes they want him to lay in certain positions like on his stomach. Kreed doesn’t tolerate those positions well and tries to get up. Cinna lays across his legs and helps to stabilize Kreed and hold him in place. This has also proved to be amazing for us.

As you can see, having Cinna has been life saving for us in a number of ways. Their relationship has grown and developed and you will often see Kreed petting Cinna while laying next to him and it’s amazing. Especially when Kreed is leading Cinna, it’s truly wonderful to watch both of them. Recently Kreed even requested to have Cinna by him on his device and he wanted to pet him. This was also a first.
It’s been an amazing two years. We have literally had Cinna since he was eight weeks old and he started out his life with us by crawling in Kreed’s lap. He is there for Kreed when he is upset, when he needs to provide stability or if Kreed just needs a friend. For a child that has difficulty communicating, calming down and being socially aware of other things or people…their bond has helped Kreed in all of these areas and we will forever be thankful for the dog that Cinna has become. Our life has improved dramatically with regards to how we can help Kreed because of him. Just check out these photos!

And...the beginning of this life long friendship...


Friday, March 7, 2014

Kreed's New Diagnosis

Kreed has been faced with many life changing events in the past year. It was about this time exactly last year that we knew something was wrong with Kreed. First it began in January...a slow decent into nonstop obsessions and tantrums. Sometimes it takes a few weeks to really notice the increase. Then one morning I was going to give him his thyroid pills for his hypothyroidism and I happened to set them on the counter instead of putting them in my hand and straight to Kreed. Then my heart stopped- both pills were the same size. In the past, one pill was always larger than the other. Fast forward an hour or two and the pharmacy admitted they had messed up his prescription and he was being doubled dosed on one of the pills and not given the other. Since his pills are compounded, they were both white, but one had always been slightly larger. I didn't notice for three weeks because that size difference doesn't seem like much when they are just in your hand. So at first, we attributed his rages to the mix up in meds and thought within a few months things would be normal.

Fast forward to the summer and his rages were out of control. I talk about this more in Kreed These Days.
By October his rages were completely gone. Replaced with one happy boy who was communicating like crazy. Kreed was active again. Kreed was happy again. We had our boy back! His level of communication was astounding and amazing and we filmed every part of it. We were so thrilled. He may have Addison's, but the medication was doing the trick and everything seemed stable.
Six weeks ago we began to notice Kreed was laying on the ground a lot. Given that Kreed is incredibly hyper- we took notice. Then a few hours at a time became ALL day. We took his blood sugar- normal. In the past that was the only thing I knew that would put him on the ground. Then a few weeks into it, we began to check his pulse- wicked fast. And so began a new kind of hell...watching Kreed lay one the ground uninterested in everything. Sometimes he had trouble breathing. I was finally able to take his pulse regularly and it was sky high. Resting was 115-130. Standing was 130-190. Everything seemed to come crashing down again. He had variable pulse, blood pressure and really spent all day wanting to do nothing.
We even took him to the hospital which is in Sickness and Communication.

Finally we were going to take him for an EMG/Nerve Conduction test. The anesthesiologist walked in and said no way after looking at him for five seconds. She saw his blood pooling, heart rate and blood pressure. Said no way could she put him under for a painful test. She wrote out everything she thought it could be and told us to get into a cardiologist ASAP. And so we did.

And found a fabulous pediatric cardiologist. He checked out his heart with an echo and talked to us for almost two hours. He diagnosed him with Dysautonomia, and more specifically POTS (Postural orthostatic tachycardia syndrome). Which basically means an intolerance to standing up! Here is the specifics:  a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. In addition his blood pressure is unstable and blood pools in his legs and cause swelling.

Finally putting a name to things made treatment options better, but the thought of it all still filled me with sadness. Knowing for a while our very hyper fun loving boy was exhausted and with little interest in activities that would fill him with excitement. Reading others perspectives was also hard because so many are exhausted just by being awake, much like Kreed. He lost a lot of his mobility from so much time on the ground and us unable to get him up to do things because it made his heart work so dang hard. We are now trying to get him moving again, even entered a bike contest to get him a much needed adult tricycle.

But just as his autism diagnosis changed his life, so has this one. Now he has to combat the mere act of standing up without feeling exhausted. Such challenges this boy has to face. Sometimes I think it's not fair. And yet, I still get glimpses of his dimples and pure smiles and adore and love him so much for the brave face he puts on. I can't imagine what it's like to live inside his body AND be nonverbal and unable to tell us how it truly is inside of him. I know he must go mad at times.

We do face this with new resolve and he has already started medication that seems to be making an impact, but he still is not where he once was. I'm sure we all wished in the past that Kreed would be less hyper. Now I take that back. Every word of it and I'm ashamed at myself for everything thinking that...given his now not as hyper state. Sometime I'm angry. Sometimes I'm sad. But now more than ever I'm determined to get him answers. Like what lies at the heart of all of this for him? Is it mitochondrial disorder? Something else in his DNA? One day I know we will find the answers. Until now we are dealt the hand we are and must find new ways to make Kreed feel better.

Raising Kreed is truly a full time job. Maybe some people would be bitter over the fact- you can't just take vacations on a whim, you are limited on the restaurants you can eat at and you can only go out to the places you want when there is respite. There is lost sleep, lost hopes, lost dreams. There's the heart ache that follows every new diagnosis. Heart ache every new symptom that overcomes him. There's fear every test he is put under on what they might find.

But then there are mornings like this
And our life is truly all about Kreed...but I don't think of it like that. I think of the challenges he has to overcome and for the most part he is a pretty damn good kid. He's not aggressive, he doesn't want to hurt others ever. He is sweet. He is kind. He has a lot to say in his head and can't say it. Sometimes I yell at him, sometimes I get angry at the things he does. But it dissipates within minutes often. Some days I might be frustrated for days over his behavior- but it comes from the fear of the unknown rather than he himself. The thing is- I would sacrifice everything for him. Gladly. Without question. He has one hell of a crappy hand in life and for him I find it incredibly unfair. I can talk, I can walk, I can stand without pain. I can write, type and communicate with others with ease. I can be independent and do things for myself. Kreed can do none of these things. He even has to ask someone to make him a meal. When I think of all of that- of course I would do anything for him. No questions asked. If I had the means, I would purchase a house on the beach and let him live the rest of his days out there, feeling the surf run over his body and watch every sunrise and sunset with pure joy. That's what he deserves. To enjoy the things in life that make him happiest because life as a whole is very unhappy for him.

So do I care that life is all about Kreed? No. He didn't have a choice to deal with everything he has. But I have the choice to make his life better. To help him in any way I can and constantly better what he can do. Do everything I can to help him communicate. And give him as much love as I possibly can and give him the things in life that do make him happy.

I'm not thrilled with his new diagnosis and way of being, but I'll be damned sure to get everything he needs to be well and feel better. We always hope for a better life for him, and we do everything possible to make it happen.
And without further ado...here is the Sensory Chewelry Giveaway!!! Two people will each receive one piece of kids companion Chewelry from Mayer-Johnson!!!Go check them out www.mayerjohnson.com. No therapy room or school room is complete without items from Mayer Johnson! Kreed has never used their chewelry however, we tried it out...and its the first chewelry he has not completely bitten through. His puppy Finley even stole it and tried to bite it and the puppy barely left teeth indents! Holy cow! It is actually now Kreed's favorite Chewelry. Couldn't believe it. So thrilled though. So bring it on!!
(Results may vary about being a "chick magnet" while wearing one, but it's highly successful for Kreed :))
a Rafflecopter giveaway

Monday, February 10, 2014

Sickness and Communication

Years ago, the thought of Kreed communicating when he is hurt or sick was basically just a pipe dream. Something we longed for, but never thought he would obtain any time soon and we were stuck just looking for signs of pain. He has had several devices, and all had a doctor or a sickness page would basically say if he is hurt, not feeling well or which body part might hurt. He's always had these pages. We've always worked on these pages. He never once told us he wasn't feeling well.

Enter the Dynavox T10. Wait, let me back up. With his old grid based devices, Kreed could basically go to a category and there is the language for not feeling well and that was that. One category to talk about sickness or pain. Also, the categories are not specific to the situations. Take for example Proloquo2go. And I'm talking about pretty much out of the box what are the choices. Notice that "call nurse button" and "braces" are in the same category. Guarantee when Kreed was sitting in the hospital he did not need to have both those in the same category but rather one in dentist and one in hospital.
Those were a few examples of the health category. And then the body parts: 
And there is not going to a yes/no screen quickly or another category quickly. 
And now here are screenshots of the health page from Kreed's old PRC. Granted the newer one might have some extra things to say, but overall, still lacks depth and if he had that device now, he wouldn't have been able to tell us as much information. 
Basically, I find the grid based page sets a giant vocabulary set. Even the old Dynavox series 5 software fell in the same trap as these. It's basically a word bank. It does not lend itself to conversations very well. Once a child masters requesting, there isn't a whole lot of places the child can go. If you look at the research, almost all the research is focused on requesting. I often wondered why, and now since having the T10 with Compass, I understand: there really wasn't much else those devices could do unless a child could type and use word prediction. And then it's a long training of teaching the kids to put strings of words together. Which is not all that easy on today's fast paced conversations when information needs to be exchanged and the kids are already severely delayed. Also add in our kids processing time, and grid based systems are not the quickest pagesets to maneuver between and have the child consistently keep what the conversation is about in their mind.

For Kreed, with his recent hospital visit, time was of the essence. Doctors and nurses are not in your room for very long and information needs to be found quickly and conveyed quickly. And he needed a variety of choices to answer questions instead of building sentences each and every time. The variety of choices also lends to him being able to convey more fully his thoughts.

Okay, NOW enter the Dynavox T10. First, some screenshots.

First Kreed can immediately tell me how he feels in his quick phrases which he often does now- he will say I don't feel well, he is uncomfortable or something hurts me- this prompts me to ask him more questions. 
He can also tell me how he feels in "my needs" 
And finally in his actual doctor page there are many options:
AND THEN, you hit topic words and it opens up even more words associated with pain or sickness: 
(There are four more pages of screenshots for this one category but I didn't want to post all of them!)
THEN, I made two pages so that Kreed could talk even quicker when a doctor came in the room:

Now, first of all, I feel even the picture quality is far superior with the T10 with Compass. Kreed could tell us if he didn't feel well, the part of his body, he could ask the doctor questions, he could respond in a variety of ways to their questions. Furthermore out of the box it had most things Kreed would come across in the hospital! I didn't have to do much extra programming other than two tab pages to put some of the things he was saying in one location for even faster communication. That took all of two minutes to make. Kreed had fast access to a huge vocabulary, questions, responses, comments and requests. Also right there on the right are his categories easily accessible and on the left, quick phrases, quick fire or even the keyboard. Everything lends itself to quickly communicating.

Here is the video of Kreed talking to his nurse at the hospital, also with myself and his mom asking questions as well so he understands. 

Here he is talking to me about how he is feeling:

This kind of communication we never thought was possible, at least in the current future or really I didn't know he would be able to be this communicative before he learned how to type independently. His ability to move between phrases, answer yes/no and answer questions directly has changed his life. And the navigation and the depth of language in the Dynavox T10 has made this possible.

I think the old consensus was that kids should build their language word by word to make the sentences and fully communicate with devices. Unfortunately, this is not always the reality with out kids who have multiple needs from severely delayed or non-existent language (but a good receptive repertoire), paired with the speed at which conversations need to happen, plus the processing time the kids need to understand what is being said and what they need to say back. With all those things taken into account- the days of building those sentences from core words or brick by brick are limited. I think more than anything, Kreed has taught us the need for outside the box thinking when it  comes to teaching nonverbal kids how to communicate.

Kreed has had the T10 for about 3-4 months, and in those three to four months he has gone from a kid who could ONLY request and answer basic questions to a kid who can ask, answer and comment on questions, make his own comments, type out some of his thoughts, answer yes/no questions independently and talk about himself and his own body. Just THREE MONTHS. He had the grid based devices for FOUR YEARS. I have now made it my duty to study these devices and try to figure out the differences so that other families can be as effective. Kreed also used to tantrum horribly when he couldn't get what he wanted. Basically if he couldn't have what he wanted, he had no other way to communicate his needs and thus a meltdown. Now, he has like a thousand ways to ask for things and our posting of videos of his arguments have become epic and well liked. Because he chooses words now instead of aggression and that is a miracle to us as well.

Here is a short history on his use of devices. There is such a difference these days. We tried in vain for years to teach Kreed to build each word of the sentence, but eventually his attention and the pace of the conversation just died. With his T10, the conversation stays alive, Kreed hears all the words being asked and he will fill in nouns or verbs as needed and he has so much more language at his fingertips.

Take for instance this video from a year ago, although Kreed did not tantrum on this video, he did shortly after. Notice the language in this video.

And here is his latest progress with arguments instead of tantrums, I think it's safe to say there is a dramatic difference in teh words that he can use to work through problems:

I am thrilled there are more opportunities for devices for kids of all ages. However, I urge families not to get complacent in thinking particular devices are the be all and end all. Do not be okay with your child only requesting but never moving past that. There is more available. There is the Dynavox T10 or Dynavox Compass on the ipad. That is the only system I have found that thinks differently. Although they offer a grid based as part of it, they still have the flat navigation to move through things. But in particular I wish I could shake hands with the people who thought of the NavBar pageset because it is revolutionary and different and I have found, more how our kids think. It solved the problems of kids not being able to communicate fast enough and effectively and more importantly allowing the kids and adults to have a voice DURING conversation.

Kreed's hospital visit proved that to me more than ever as he was able to talk about a variety of subjects with ease and shocked everyone. At the end of his stay, all the doctors were communicating directly with him, as well as the nursing staff.

To me, it's incredible. To him, he has found his voice.