Saturday, July 27, 2013

Tried and True part 2: Tools To Increase Communication And Decrease Frustration

The ability to communicate our wants and needs is probably the most significant thing we learn in early childhood. Imagine the frustration if no one, not even your parents could understand what you needed. If day after day every time you wanted something, or wanted to express yourself to someone else, you couldn't. Even worse, imagine if you couldn't understand what was being said to you. Like being in a foreign country where no one spoke your language and you were forced to walk through life not knowing what was going on around you. Not knowing what was coming next. Unable to transition from one task to the next because you couldn't understand the steps. Andrew refused to use any sign language except "eat" and "all done", so his ability to express himself without behaviors was almost non-existent.

This was Andrew's life before he was introduced to the Picture Exchange Communication System. PECS for short. This system is used as an augmentative and alternative way to communicate. Many children with Autism and other special needs are very visual learners. Andrew is no exception. As soon as he was diagnosed, we were told that he might respond to this form of communication, as he was completely non-verbal. I immediately proceeded to download the free version of the Boardmaker Program. It gave me access to over 900 widely used pictures that I could print, laminate, and cut into squares. The picture above is a sample of what the Boardmaker icons look like. Andrew made this "schedule" years ago. He wanted to do some really fun stuff this day. :) 

I spent days finding all the icons I needed, formatting them onto pages in 2 inch by 2 inch squares, printing them out in sheets, cutting each square, and laminating them, and cutting them again. Andrew used Boardmaker icons for years, until we decided he would benefit more from real picture icons instead of stick figures. He is so visual, and real pictures have so much more detail and color. You should have seen him when I made all these new icons. I mean, it was like Christmas to him. He was so happy that I was giving him new words. It was amazing. 

I took all of the icons that I had cut and laminated, and put them into a communication binder I made. All of the icons had Velcro on the back of them so they could be fixed to the binder over and over again. I would put the icons in order starting at the top and continuing down the side of the binder. Andrew could easily see what were doing for the day so that he would know what was coming next. He would move an icon into the All Done envelope to help him transition to the next thing. All of his icons were in a 2 inch thick full size binder at all times. The schedule below was the one we used on the day Andrew had to have his sleep study at the hospital.

Before we figured out that Andrew's frustration stemmed from his inability to communicate and be understood, he had so many aggressive and violent behaviors. It was constant. He was so upset and it manifested in terrible ways. However, once he understood the system we were trying to implement, he jumped in with both feet and never looked back. He loves his visual schedule more than anything else. We would have to take the binder every where we went. It fell apart more than once and I would have to make new ones often with sturdier material.We would loose icons often and they would have to be remade, but it was still the best way we had found to communicate.

Less than a year ago, we were able to slowly switch Andrew from his homemade communication book, to having his entire schedule on his iPod touch he wears around his neck. He is such a tech savvy child. He had become a whiz and the iPad, so learning how to use the iPod touch was pretty simple for him. I found an app called First Then Visual Schedule HD that allows me to put all of Andrew's icons and visual schedule in one place. I can take any picture from google images to make icons and put them right into his schedule as long as I have a wifi signal. It allows me to say the words in my voice so when he touches the icon he can hear the word. It also allows me to make a video of steps for him for more difficult tasks like brushing his teeth so that he can be told each step in the process.

This app has changed his life. It has opened up a whole new world for him. We use it all day every day. He always has it around his neck, so he has very little anxiety since he always knows what is happening. No more loosing icons and ransacking the house in the middle of the night looking for them. No more printing, laminating, and Velcro. No more binders. It has made my life so much easier. 

Perhaps the most significant change that has occurred in Andrew's life with respect to communication is the addition of an AAC device. After a very long process of getting assessed for the need for a device to help him communicate effectively, and trials with multiple devices, we found that Andrew responded the best to an iPad with an app called Touch Chat. It is a very intuitive program, and it will grow with him indefinitely. It provides the ability, like his scheduling app, to make your own icons with pictures downloaded from Google. I can make icons of every single place we go, every person we visit, every food he eats, etc. It has unlimited capabilities and speaks for him. See a video of him using it below:

He has only been using it since the beginning of March, and it has decreased so much frustration. Especially when he has been sick, and looses the minimal language he does have. Without his talker, he wouldn't have been able to tell us what he wants to eat or drink, or how he is feeling. He has learned to use the talker to tell us when he is mad, so it has decreased his self-injurious behaviors a lot. 

Coming up next. The final part of this 3 part series: Tried And True Part 3: How We Improved Andrew's Sleep.


Monday, July 15, 2013

Tried And True Part 1: 5 Tools We Use To Manage Behaviors

Over the years there have been many staples in our house that have been necessary for my son to function on a day to day basis. When he was younger, it was his stimmers. He had to have 2 identical items in his hands at all times. His favorite by far....Nintendo cases. Remember these?

Andrew had to have 2 cases with him everywhere we went, or he couldn't make it through the day. Luckily we had a stash of these from my husbands old video game collection...or we would have been in serious trouble when he threw one out the window on the freeway going 80 miles an hour. Or when he dropped one out of his stroller at the mall and after 45 minutes of searching....we had to give up and go home. 

He did grow out of the need for his Nintendo cases finally. However, there is a list of things we use every single day that he cannot live without.  This post will be part one of a three-part series of tried and true items and techniques to help with behaviors, communication, and sleep issues. I hope this series will be helpful to others who are trouble shooting how to help their kiddos. OK, let's talk about sensory tools to manage behaviors.

First. Noise blocking headphones and music headphones. Andrew has always been super sensitive to sound. He was unable to concentrate at school. He would keep his hands over his ears all day in an attempt to get some relief from the constant noise that made him so uncomfortable. Because of this discomfort, he would hit himself, yell, cry, and was unable to focus enough to function in the classroom or in the community. To give him some relief, we started training him to wear headphones at age 3.

He took to headphones quickly because we started him with over the ear headphones playing his favorite classical music. Once he realized that he could listen to music and block out his noisy environment at the same time, he was sold. The problem we ran into with the expensive noise canceling headphones was that he would chew on the cords and ruin them. It was much cheaper to go with ear buds for music and noise blocking headphones for when he was really sound sensitive. He uses them daily at school during certain activities, and at home when James is being too loud. They are also a must in restaurants and movie theaters, and allow him to participate in fun activities much more successfully. If this sounds like something that might help your child, the best place to find noise blocking headphones that block out 32 decibels of sound is Harbor Freight Tools or other home improvement stores. Also, if you search gun muffs on Amazon, there are many choices and they are inexpensive.

Next is the Chewy Tubes™. We have tried many different chewies, and the Chewy Tubes™ have been the best ones for us. Andrew has always been very orally fixated and needs a lot of input in his mouth. This spells disaster when he is putting lithium batteries, coins, and screws in his mouth when we aren't looking. To keep dangerous items out of his mouth as much as possible, we encourage him to use his chewy.

Other chewies have been torn to shreds, but we have had the same 4 Chewy Tubes™ for years and they still look brand new even with daily use. Andrew always has one hanging around his neck that he can put in his mouth at any moment. They are especially useful when his anxiety is at its peak. They also help him focus on difficult tasks. Much like how I used to chew on my pen cap during exams. :) Of course if your child is too young or you are concerned that wearing one around the neck is a choking hazard, I think you can attach it to a shirt with a makeshift clip. The best place to find this type of chewy is on Amazon. They sell them in singles by size, or you can buy a 4 pack of all different sizes to determine which one your child likes the most.

Along with his need for Chewy Tubes through the day, his sensory diet also includes access to his favorite music on his iPod Touch at all times. To give Andrew the ability to use the iPod whenever he needs it, we found a special case on Amazon (called the Survivor Case) that allowed us to string a cord through it and hang it around his neck. This really helps him feel he has some control and has vastly reduced his anxiety just knowing that he has it when he needs it. And it solved the problem of him putting it down and walking away when we were out in public. Replacing the lost iPod Touch once was enough.

Music is often used in conjunction with joint compressions and deep pressure squeezes at least every hour when he is awake. These 2 things have always been so helpful for him in regulating him and calming him down when he is having a sensory meltdown. When he was younger, the mix of a compression vest and classical music was the perfect cocktail for him. He would literally look drugged when these two things were put together. It would calm him instantly. This is still true today, though we haven't found a compression vest or weighted vest that works quite as well as squeezes due to his size, so we have become his vest when he needs deep input. A large beanbag to crash into also worked very well for years.

The final thing that helps a lot when Andrew is frustrated and can't regulate himself is exercise. However, he is unable to ride a bike or a scooter at this time due to motor planning and balance problems. And he is not a fan of playgrounds because of the noise. We had to find something that he could do safely. The best investment we ever made was our trampoline. He not only gets exercise, but he gets input in his whole body. And it relieves his anxiety and stress. Less stress and anxiety = decreased behaviors.

I realize that not everyone can get a trampoline. But I encourage you to find something that works for your child to give them that endorphin rush and meet those sensory needs. An obstacle course you create in your yard. Going for a walk and having them race you to the house 3 doors down (interval training). Get a scooter board and have them sit on it while you hold a long rope. Then have them pull themselves to you hand over hand. This requires work as well as motor planning, which can be great OT for our kiddos. Think of fun activities that don't seem like work to them, but require a lot of muscle use. They will most likely sleep better too. 

Next post will be Tried and True part 2: Tools To Increase Communication And Decrease Frustration.

Friday, July 12, 2013

The Beauty Of Acceptance

Seven years ago I started the hardest journey I would ever have to face. I went through all the phases of grief. Some people disagree and think it is downright wrong to grieve when your child is diagnosed with Autism. But I did. I still do every now and again. I had my idea of what life would be like when I had children. I had expectations of what my child would be doing. I believed he would be able to do anything he wanted. That the sky was the limit. It is normal to imagine the future with your unborn children. And it is perfectly healthy and normal for a person to grieve when that future you planned on is not the reality. So yes, I grieved. My husband grieved. And every time my son regresses, or when he hits himself over and over again and cries because he can't do the things that he wants to, I grieve again. I think it is a healthy way of dealing with the cards we have been dealt. I don't grieve him or who he is. I grieve the expectations and dreams I had that will not come to pass. I grieve the struggles he will always have.

In the 3 years after Drew was diagnosed, I had gone through some terribly hard struggles coming to terms with our new reality. Those first few years were the toughest. The learning curve was steep. The depression was great. My husband and I were just barely treading water. And we weren't connecting. We just had nothing left to give each other at the end of the day. The minimal sleep we were getting, combined with the therapies that seemed to be doing little more than showing us how steep our climb to help Drew had become was just too much to bear. I dealt with my feelings in unhealthy ways. So did he.

Healing and acceptance is a process. It does not happen overnight. But eventually the healing came through the support of others who share our journey, and finally finding a church that could meet Andrew's needs so that we could get our spiritual and emotional tank filled.

I decided in April of 2009 to memorialize my son and our journey with Autism in a tattoo. It was the final step in the grieving process for me. The final piece of acceptance and embracing the journey that changed me to my core.

Below is a journal entry I wrote when I had decided on the design:

I chose to represent my son as a sea turtle. Sea turtles are water creatures. Drew loves the water and would spend all day in it if I let him. They also retreat into their shell to escape the world and feel safe. This is not unlike my son, who often retreats into his own mind to cut himself off from others.

A sea turtle is considered a courageous creature because it makes progress only when it sticks its neck out, and moves forward with patient, steady flow in order to achieve the desired results. This is much like our children with Autism who must step out of their comfort zone to learn and tend to master things at a slower pace than those around them.

Sea turtles were thought by the Mayans to be associated with music. My son loves music and is at his happiest when music is playing for him.

The Autism puzzle piece design, which is the world's symbol for Autism awareness, is on the turtle's back. Drew will be carrying the weight of his Autism throughout his life, and will have to work that much harder to overcome his daily struggles with it. He will have times of overwhelming improvement and mastery, and times of regression where he will retreat into his shell and need time away from the judgement of the world.

In the tattoo, the turtle is out of his shell in a swimming motion, progressing through life in a courageous manner. This is how I will always see my son. He will always have Autism, but it is only a part of him. Same as with the turtle as the puzzle pieces are only on the shell.

There are 2 hearts that are negative space through the turtle's shell. My heart, and Drew's. Connected. Intertwined forever.

Rarely a day goes by that I don't get a comment from a random stranger about my tattoo. Wanting to know the meaning and saying how beautiful it is. I tell them what it means to me, and every time I do, my heart heals a little more with the awareness it is spreading. This is the beauty that came from embracing the journey that I had never planned on taking. 

Friday, July 5, 2013

"Beautiful Andrew"

Two words that Andrew said a couple weeks ago during an hour long episode of uncontrollable crying. Not a tantrum. Real guttural crying coming from a place of deep emotional pain and agony.

To understand the gravity of these two words, you must first know that Andrew's primary form of language is Echolalia. Hearing words come from his lips that aren't scripted is highly unusual. Even more unusual is him using words when he is upset. I mean, like one in a million chances. When he is upset, his ability to process information and communicate goes out the window. Only basic functions remain. Screaming, crying, self-injury, etc.

So when these two words escaped his lips during a moment that he seemed to be in the depths of despair, we took notice immediately. My husband was the one to hear the words. We were camping and I had stepped out of the trailer for a few minutes to get James to sleep in the tent. I came back, and Drew had calmed down. Bryan told me what Drew said. We rarely even use the term beautiful unless we are talking about a flower, or the ocean, or a drawing that Drew did. We thought back to the day we had. Specifically the evening prior to getting ready for bed. We had gone to a creek near the campground and a couple boys had fishing poles and were playing near where we were throwing rocks in the creek. Andrew was watching them intently as they were chatting away, and went up to them and touched their fishing poles. The boys just went about their conversation, and Andrew didn't linger for long. 

Bryan quickly came to the conclusion that Andrew said "Andrew beautiful" because he knows his struggles and knows that he is different. It was his way of saying that he is as wonderful as those typical boys, and that it hurts him deeply that he is unable to do the things that they can do. I agreed with his diagnosis wholeheartedly.

It is not the first time that Andrew has had an episode like this. In fact, one of the many reasons that we pulled him out of public school this last year was because he was having moments like this more and more often. It was reported to us by his teacher at school that he was exhibiting more and more frustration around the typical kids during inclusion and she thought it was because he was so aware that they didn't share his struggles. He went through months of what seemed like depression. I watched my son disappear before my eyes. He stopped talking, and by talking I mean his vocal stims that always helped us to know when he was happy. He seemed to be so very low. Retreating into himself. Gone was the mischievous twinkle in his eye that I had grown so accustomed to. Red flags went up and I worked tirelessly to try to get him into a place where he could feel understood. Where he could be comfortable in his own skin. He is in that place now, and started to thrive again from the moment he walked through those doors.

It breaks my heart to know that Andrew knows he is different. I have long dreaded this moment as he has grown over the years. Part of me always hoped he would not see it. That he would be blissfully unaware of the differences between him and other kids. No one wants their child to feel pain. To feel like they aren't good enough. I never want Andrew to feel that way. But there are times like the one on our vacation, where he is more aware of the rest of the world, and it does hurt him. This was just the first time he ever verbalized it. And we can't fix it for him. All we can do is tell him how wonderful he is, how proud we are of him, and hold him tightly as he experiences the overwhelming sadness. 

Tuesday, July 2, 2013

What If

I have been thinking a lot lately about how our lives changed when Drew was diagnosed. Then James. How different things are than what we had imagined. How our priorities have changed. How we have changed. In many ways for the better. Am I thankful for Autism? No. It is heartbreaking to watch my sons struggle so much. Would I take it away if I could. Probably. The most debilitating parts anyway. Of course this isn't an option. But if it was.....

I rarely watch the show "House". But I was up late the other night and caught an episode called "Half-Wit". About a musical savant played by Dave Matthews. He was having increasing seizures and they couldn't figure out why. He had an accident in childhood that injured one side of his brain so much that he suffered from Autism-like symptoms. No self-help skills, echolalia for communication, and basically was at the level of a kindergartener. But the accident gave him the gift of music. And it was the only thing that seemed to give him joy.

As the episode progressed, they found that the problem he was having in his brain stemmed from the accident itself, and if they removed the half of his brain that had been damaged beyond repair 30 years prior, his devastating seizures would stop and perhaps the one side of the brain left would compensate for the missing half. He could perhaps regain the skills he lost because of the accident. He might be able to learn. Maybe even get a job and live independently someday. But he would loose his ability to play the piano, because the side of the brain responsible for musical ability would be lost.

The father who had been taking care of him his whole life had a serious choice to make. Leave him like he was, manage the seizures, and keep his son able to play the piano that he loved. Or do the surgery, and give him a chance at a life with no seizures and a possibility of a whole new world for him. The father was distraught. He didn't want to risk changing his son that he had been caring for his whole life. He was scared of the unknown. House said to the father that the son might not be as happy as the father thought he was. So the aging father came in the son's hospital room and asked him if he loved the piano. The son said yes. He then asked him if he was happy. The son paused, then looked at his father and repeated "Are you happy". Tears rolled down the father's cheeks. He kissed his son and said "OK son. It's gonna be OK."

In that moment he decided that he had to risk the surgery for the chance at a more functional life for his grown son. The surgery is done immediately. As the episode ends, the father and House are talking about how the son will be unable to speak until his one side of the brain learns to produce speech without the other half. The father looks at his son worriedly, but then he sees him easily button his shirt which he has been unable to do since childhood. The son looks up at his father and smiles.

Yeah, I lost it. You bet. Is it reality? No. It is a show. But it touches on some real thoughts, wishes, and emotions that I have as a parent of 2 children that struggle so much. My son cannot answer the question "are you happy?" He has such severe echolalia, that I rarely get to hear his own words. His own thoughts. It is so hard. I wish that I could change his circumstances. I wouldn't want to loose all the amazing things about him that make him who he is. And Autism is a huge part of that. But many days the pain and the struggles for him seem to overshadow those happy moments where he is able to express himself and be comfortable in his skin. The look in his eyes when he so desperately wants to be understood but he isn't. That right there. I would take Autism away just so he wouldn't have to try so hard to be understood by the one person who should get him the most. Me.

It is not a reality. And I don't dwell on it. But I have those moments where my mind escapes reality for a short time and I imagine what it would be like if they were typical. What if Drew could answer simple questions? Or if he could tell me what he did at school. What if my kids could actually play together? How much easier would life be if Drew could dress himself and use the bathroom without assistance? Or if he had some sense of safety so that I didn't have to worry about him lighting things on fire, or wandering into the street at any moment. If James could communicate like other kids his age so he could make friends. So many other things I desperately want for them. Hopefully some of these things will happen eventually. Because the thought that it will always be this hard just drains my strength and my will some days. Especially on the days where I am around typical families and I see what "normal" is. Those days are the hardest.

I love my boys fiercely. Every single thing I do every moment of the day is for them. I love their personalities. They find joy in the simple things we miss because we are too busy to see them. They adore their Dad and I and I doubt their will ever come a time when Drew grows out of his desire to be with us, unlike many kids when they reach their teenage years. There are definite plus sides. But every now and then the "What If's" invade my mind and I have to fight to keep the despair from coming with it.