They Understand Me

Travis turned thirteen just weeks after beginning school at The Joshua School (TJS). As each year passed we began to get more and more worried about Travis’s future. We were not only concerned about his intellectual disability, but also his mental health.

Even with the help and advice of many professionals, we were having difficulty managing his chronic depression, anxiety, and especially his anger.

If you have been following along, you know that we have been unturning stone after stone trying to help Travis feel better.

Early on I wrote about how as parents of a child with special needs, we had experienced several stages of mourning. We believe that our child is exactly who he is supposed to be. But as parents you have a dream and a plan of what your child’s future will hold. And as you navigate this unexpected place that your family has been taken, you adjust your outlook for the future.

And that process does include a stage of, for lack of a better way to describe it, mourning. We feel sadness for Travis. Because we know if he had it his way he would be a typical teenager. And Travis is keenly aware of his disability, and that makes him angry. And he is unable to manage his anger.

In the beginning we thought we had plenty of time to get to the bottom of Travis’s diagnosis and get him the professional help that he needed to reach our new goal for Travis. That Travis be the best version of Travis possible. That he be able to live as independently as possible. Because we know it is important to him. And most importantly, that he be happy.

But as the years passed, we came to the realization that the traditional college or trade school may not be the path for Travis.

Travis’s belief was that he would work at Microsoft one day. One of his favorite pastimes is video gaming. His dream is to develop video games. How do we explain to him that Microsoft would require a higher education? And that they are not local? That moving away would be difficult because his family and their support are here?

Even today, at age twenty six it is hard to have a conversation with Travis about his future. He is unable to process any information that he does not want to hear. He gets upset and angry. And he starts to talk about how his life is not worth living. And that is hard for me to hear. Because I am at a loss about what more I can do to make his life more fulfilling for him.

Travis first started talking about suicide at age seven. Back then he talked about how much he hated his life. That he wished he were never born. That he wished he were dead.

And I countered with all the stuff any good mom would say. I told him how the day he was born and put into my arms was one of the happiest days of my life. That he was an answer to my many years of prayer. That I would never give up on researching and working to find a way to lessen his pain. Because when he hurts, I hurt.

He tells me that I do not understand. That his pain is all encompassing. And he is right. I do not understand that level of pain. And I tell him so. I wish there was a way that I could bear it for him.

Over the years I have shared with many friends and family members that it is hard to figure out where the disability ends and the mental illness begins. Or where the mental illness ends and the disability begins. Did you have to read that twice? It’s because it is confusing! Is he capable of a particular task, but the mental illness gets in the way of completing it? Or is his inability to complete a task causing him mental anguish?

Ultimately the answer does not matter. Whatever the cause, what you see is what you get. It is what it is.

What we do know, is that Travis does not want others to know when he is not able to understand a concept or complete a task. So he will show behavior. He wants those around him to think that he chooses not to do the work, not that he is unable to do the work. (Just want to remind you that he has given me permission to write his story.)

That is why TJS was exactly where Travis needed to be during his first few teenage years. Remember my blog last week about the letter I wrote to Oprah? When I asked Travis what he liked about TJS and he said: “I can tell them embarrassing things and they don’t tell anyone else; they love me just the way I am, even when I cuss, they understand me and that makes me feel better about me…”

At TJS Travis was able to share with staff when he did not know something. And even in the event he acted out to hide his inability to do a task, they saw through it!

Most of all, he learned that he was lovable just the way he was! They saw him as a person. They understood that the behavior was a symptom of a diagnosis. And every day was a new day with a fresh start. Just the way I see him.

We shared our concerns with the staff at TJS. Would Travis be able to provide for himself? And if he wasn’t employed, how do we help him maintain happiness, give his life some meaning? And because of this conversation with TJS, much of Travis’s time there was spent on trying to answer that question.

We knew that the best chance of Travis being able to hold his focus and have successful employment was to find a position that would be of great interest to him. We talked to TJS about Travis’s personality and his interests.

We shared that Travis had a heart for others with disabilities. Especially children or older individuals. And that he loves animals. During his time at TJS, Travis participated in many internships. Many of his internships revolved around children with disabilities and animals.

I know what you’re thinking. Why not gaming? What about places like GameStop? Just so you know, I have given a kazillion (yes, I made that word up) ideas a great deal of thought. Probably too much thought. So I will tell you what came to my mind when I considered Travis working at GameStop. It is of high interest to him. But this is where my imagination (based on my immense experience) brought me:

A customer walks in. Let’s just go with Travis notices, and asks if he can help them. They want a certain game. Travis asks why they would want that game. It’s a stupid game. He brings them to a game that he loves. And tells them over a period of several minutes why it is superior to the game they requested. Tells them about all the available maps and skins (character outfits) for that game. And all of the available weapons. And then he shares what level he’s on in the game he is showing, and how long it took him to get there. And that some of his online friends helped him get to that level while playing live.

The customer shows all kinds of body language, trying to get a word in edgewise. And finally just interrupts as they look at their watch. The customer says they are not at all interested in that game. And besides they do not have a Xbox, they have PlayStation. Travis is insulted.

Not just because they interrupted. But also because they have a PlayStation. To which he responds, “you cannot be serious. PlayStation sucks.”

All the while a line has formed at the register. And several other customers have come in and need guidance. The phone is ringing and going to voicemail. Which will not get checked on Travis’s watch.

Have you ever been to GameStop? If you are lucky there may be two people working. But usually just one. Navigating all of these competing occurrences at the same time. Multi-tasking. And I would argue that their employees don’t always get it right. (Why are you answering the phone when you should be helping the customer that already walked in the door and is waiting to hand you their cash?)

The customer Travis is helping is uncomfortable, but Travis cannot tell. He is unable to read social cues or body language. He would also have trouble running the cash register. He would be easily exploited, and have difficulty giving change.

And when his boss tries to redirect him, Travis tells the boss exactly what he thinks of him. Because he says everything he is thinking out loud, cuss words and all. I will leave what he may be saying to your imagination. (But I can assure you that if I said what I was thinking about some of my bosses, it would not have gone over well. I bet it is the same for most of you too!)

So, TJS sets up a program to allow Travis to be an intern in another classroom with the younger kiddos. He does this for some time, but everyone on Team Travis is wondering if this could actually work in the real world. Travis could be difficult to count on, because his success was dependent on how he was doing himself on that particular day.

And we have to consider that although TJS could manage that; because first they were providing him an internship, but they could manage without him if he was unable to work a particular shift, and second, they knew exactly how to manage Travis. TJS teaches children with disabilities. A typical employer would have no idea how to manage Travis.

This is part of what makes it difficult to employ Travis. I cannot speak to all individuals on the autism spectrum, but I can speak to what is hard about Travis. He can be in a good place on any given day, and be capable of doing a task that is being asked of him. But then not at all able on his very next shift. A specialist once told me that it depends on where he is in his brain on any given day. If he is not in the right place in his brain, then he is unable to find the correct file. The file that once opened helps him to complete the given task.

Or he is overstimulated this shift. It’s too loud in here today. Too bright. What is that smell?

And then there is the mental illness. So now the task that he happily did his last shift is beneath him today. Or boring today. There is no way you can make me do that task today.

TJS set up an internship for Travis at the Denver Zoo. (I told you they were awesome.) He was part of their Teen Research Aide Program. Their handbook states, “Research aides are an essential part of making the zoo work. The primary responsibility of someone filling this position is to help the zoo tackle some of it’s priorities in terms of animal welfare. We hope you view your research aide internship as a serious job, and in return we promise to give you valuable skills that you will use when you are working in the future.”

Travis’s research revolved around observing animal behavior to help the zoo determine if the animals were content in their habitat. He was responsible for collecting data regarding animal behaviors.

Travis once shared with a supervisor at the zoo that he did not believe the polar bears were happy in their environment. He thought they were bored. When asked what could be done to ensure the polar bears happiness, Travis said they should put some penguins in with them.

Travis was required to work specific shifts. TJS staff transported Travis to the zoo during the school day. They stayed and worked with him one to one, in order to help him learn and complete his tasks. As I look back through Travis’s zoo training manual (yes, I still have it), I can see that a TJS staff member scribed all the answers for Travis on his training sheets.

One day I had to bring Travis in to work his shift because it was a no school holiday. I was unsure what my exact role was to be in the process. Travis and I checked in with his supervisor. He was given a tally sheet on a clipboard and instructed to put a tick mark on the column of a particular behavior. Each time he observed the animals perform a behavior he was to mark his tally sheet in the appropriate columns and then total them at the end of his shift.

After rereading his training manual to write today, I realize that they probably set up this particular system with him in mind. The manual states that the aides are to observe the animals and take notes. Travis would not have been able to watch the animals and take notes.

It was a long time ago, but I think his job was to observe monkeys on that day. We went to their habitat, but I quickly realized that I was a distraction for Travis. He was visiting with me when he should've been observing the monkeys. So I found a place to sit down where I could keep an eye on him, but I was no longer a distraction.

Travis was wearing his zoo shirt, a boonie hat and holding his clipboard. He looked like a zoo employee. And each time a person came to the exhibit he recited all the facts about the specific species and their behaviors to each visitor. Again and again. Each visitor seemed to appreciate his knowledge and thanked him.

When his shift was over I went to him and looked at his observation sheet. It did not have a single tick mark on it. But I can tell you that I was happy. Because he was happy. And I wondered if this could in some way become a career or volunteer position for him. In the back of my mind I was thinking about the tour guide at Animal Kingdom at Disney. Never mind how far away that is, it still gave me some hope. Can you see it? You’re on the safari ride and the guide is wearing a boonie and talking on the microphone. Reciting all the facts. And throwing in a funny story here and there.

It was time to go and check out with the supervisor. I had only been to the zoo a time or two and am directionally challenged, so I didn’t realize that Travis was taking me the long way back to the office until it was too late to do anything about it. As we walked by the aardvark exhibit Travis walked over to a woman and her daughter. He asked them if they knew why aardvarks walked on their knuckles. They said no.

OK. I am going to be honest here. He told them exactly why, only I couldn’t remember his answer. So I just now had to ask Google. Apparently, their claws are so big and sharp that they walk on their knuckles to keep them out of the way. Travis knew that back then, and told them. They seemed impressed and thanked him for telling them.

Ultimately we were late to check out. And I had to explain to his supervisor why his tally sheet was empty. Later it was decided that a parent could not fill in for a TJS staff member in the future. My bad!

TJS also set up an internship for Travis at Ferret Dreams Rescue & Adoption. Travis loved this experience. The hard part for us was having to tell him no time and time again when he wanted to bring one home. The entire reason this rescue existed was because people thought owning a ferret would be great fun until they realized that it wasn’t. And then they surrendered them to this organization.

As always, I re-researched. I googled the agency and they are still in existence. I’m betting that if we lived in the Denver area, Travis would still be a volunteer there. Their website, www.ferretdreams.org, states, “We rescue sick, abused, abandoned, neglected and surrendered ferrets in Colorado and surrounding states. We are a no-kill rescue, dedicated to serving the needs of the domestic ferret regardless of age or health. We have rescued more than 2,000 ferrets since 2005.”

Travis was designated their, “Hero of the Month”, one of the months that he interned there. I added some pictures showing him working (playing) with the ferrets and the kind words the staff shared about Travis and his experience there.

Because of Travis’s great experience at the ferret rescue, I asked our local veterinarian if Travis could be considered for an internship within her business. We had been clients for several years, and during that time I noticed that she had teenagers she mentored through internships. She did agree to have him but after just a couple of shifts she decided that he was not a good fit.

I’m not sure why his internship went so wrong with her and so right with the ferrets. But if I had to guess, I think it had to do with her business being highly structured with an exact set of rules. He needed to be able to behave in a certain way because of the amount of customers coming in each day and the nature of the busy pace of such a business. He interrupted the doctors and nurses when they were talking to the clients. He wanted to offer everything he knew about animals. He invaded the personal space of clients. He was unable to follow specific directions.

She told me that she felt that he would need a full-time supervising case worker that would be available to provide him with one to one assistance, and that was something they just were not able to provide. She stated that he could not take no for an answer, was unable to process simple instructions, and could not stay focused on the simplest of tasks. In writing she stated, His failure here was multi-faceted and included his poor social interaction skills, his difficulty communicating, his impulsivity, his incredibly short attention span and his inability to accept “no” as an answer once he had decided on “some course of action”.

The letter was long and I must admit, very difficult to read. Travis had only worked with her a couple of short shifts, and she was able to in a very short amount of time detail exactly the issues that made him hard to instruct at school, hard to parent at home, and what would make him hard to employ in the future. Her letter did come in handy later down the road. It was hard to hear because with all of the steps we had taken, we didn’t seem to be moving very far forward.

Travis also participated in a car maintenance internship and a bicycle repair internship. TJS did look into an internship at the Denver Aquarium, but you had to be eighteen to intern there.

I had to laugh as I read through his back and forth notebook. This notebook is made up of notes each day to and from school. It’s how I remember with so much detail what happened during the time. On the last page I write, “please send this notebook back home with Travis as I may want to write a book someday”. And here I am, writing!

TJS took our conversation serious when we said we were concerned about getting Travis ready for a successful future. And I do not think we could have asked for anything more from them in that regard. Travis’s daily calendar at school consisted of one to one time. A great deal of his one to one time was spent driving him to and working with him at his various internships. There is just no way that would have happened at any other setting at the time.

“The one who plants trees, knowing that he will never sit in their shade, has started to understand the meaning of life.” - Bright Vibes