Friday, September 30, 2016

If I Could Read Your Mind...

If I could read your mind, love
What a tale your thoughts could tell
Just like a paperback novel
The kind the drugstores sell....

"If You Could Read My Mind," Gordon Lightfoot

What would Alex tell us if, suddenly, he were able to communicate his deepest thoughts?

That is something I wonder daily. I remember the first time I heard the expression "not being able to speak is not the same as having nothing to say."

People sometimes assume that because of Alex's disability he does not have deep thoughts, or maybe they just don't think that much about it. Those are the people who comment with amazement after spending time with him their realization that he has "a lot going on."

We try to read it in his face, in his body language, and with the communication he does possess. We've tried so many ways over the years to help him communicate. Although we've had break throughs, his communication is still quite limited and confined mostly to requests and commenting about concrete things through the use of his communication app on his iPad.

When he was about 8, his teacher suggested we try a communication system called "PECS." This Picture Exchange Communication System involved creating small, square icons and teaching him to exchange the pictures for concrete objects. I attended a two day training along with Alex's teachers. I was so excited that I started working with Alex as soon as I got home. You start with something concrete and motivating. I taught Alex to request Doritos.

Within days his communication exploded and he was able to string together words to create sentences such as "I want Doritos and Hi-C and swing." He would look all over the house for his dad or me to make the request. PECS showed him how to initiate communication and that part of communication was having a communication partner.  It was a huge break-through. I learned to love the sound of velcro as we could hear him putting together his sentences.

I bought a laminator and a scanner and created PECS boards for home and school. This was circa 1998, and we didn't have the internet to find pictures or digital pictures. I remember scanning actual packaging from Doritos and Mac and Cheese and whatever he liked to make the pictures. I also used icons from a program called Boardmaker. At the training, they said students were significantly more likely to be successful if they used the PECS system at home and at school. I made the pictures and set Alex up with everything he needed. John and I have always had the philosophy that we wouldn't ask school to do more than we were willing to do ourselves at home.

Alex did great with PECS, but eventually his book was large and cumbersome and we could tell he was ready for more. He used it primarily for requesting food and activities, and his communication was basic, but he had learned what communication was.

Next, his teacher suggested an AAC device. We had to go through an agency, conduct a trial and collect data to prove he could use the device to let us know if he were sick or injured so that his doctor could write a prescription for it so we could get insurance approval. It took about a year to go through the whole process, but we were able to acquire an $8,000 DynaVox MT4.

By today's standards, the unit looks heavy and clumsy. In the early 2000's, it was amazing. We could have layers of pages and hundreds of vocabulary choices. The unit had a voice output, so Alex could communicate more independently. It was, in its day, considered portable. He carried it back and forth between home and school and we tried to take it everywhere we went. We took it out in public, and he learned to order food in restaurants and we tried to integrate it into our daily lives. It wasn't perfect, but it made a difference.

We took Alex to visit his sister, Jessica, at MIT her junior year. While we were there, we had the opportunity to visit the MIT Media Lab and meet with some grad students working with Dr. Roslyn Picard. They were developing biometric devices for use with people on the autism spectrum. They spent a couple of hours with us, showing Alex some of the devices they were working on. It was an incredible experience.

It was about this time that apps for iPods were beginning to explode. On our drive home from Boston, John and I kidded that what we needed for Alex was a communication app. Once we got home, I starting looking for something and discovered an app called Proloquo2Go. It was in beta testing, and we bought it for Alex the day it was released. That was in spring of 2010.

Alex would be described as someone with "complex communication needs." The whole area of AAC is undergoing a great deal of change, and I'm doing my best to keep up. I was trying to figure out how to help Alex to the next level of communication when his cancer was diagnosed, so new communication ideas took a back seat to cancer treatment. Now we're back to trying to help Alex expand his communication.

My hope and my goal is to someday make that break-through to help Alex communicate beyond asking for pizza or for a ride in the car.

We've been practicing with his P2G (Proloquo2Go) on his iPad mini and he's made some interesting comments lately.

At a recent chemo appointment, he was talking about his blood draw and labs. Then he exited that screen and found the button for "new topic." This was not a word I had modeled and it was on a page I hadn't seen him access before. Coincidence? Perhaps. But I like to think it was purposeful on his part.

Alex has shown many times that he has the persistence necessary for communication. He has learned to try to repair communication breakdowns. I really feel he is ready to take a next step. And I know I am so ready to finally hear what he has to say.

Despite his communication challenges, Alex manages to make his point, often in interesting and amusing ways. We have some favorite stories of his communication attempts, particularly when he had to persevere because his family was too thick to catch on.

White Chocolate Almond Bark - when Jess and Alex were much younger, maybe around middle school age, the three of us travelled to Door County for the day. This is a tourist area in Wisconsin with beautiful scenery and lots of small towns with a variety of shops. We were in a candy shop, and Alex started pointing at some candy in the display. It was white chocolate almond bark. He doesn't like nuts and, to my knowledge, had never had white chocolate. You should also know that Alex is someone who does not try new foods easily. It can take a year to entice him to try a food that he is curious about, and it's almost impossible to get him to try something new that he isn't interested in.

So I told him no, he didn't want the white chocolate almond bark. Well, we went to several more candy shops that day, and in each shop he asked for the white chocolate almond bark. He couldn't verbalize it, but each time he found it in the glass display case, and touched the glass and looked at us. Finally, I relented and bought him some. He ate it most enthusiastically. The boy who never tried new foods ate all of this candy I didn't think he'd ever seen before. That day still stands out to me as a time when I learned that Alex was in fact capable of knowing his own mind and finding a way to get his point across. 

Jessica and I still laugh about this today, in part because we were so thick and didn't listen to him, but also because we visited so many candy shops that day.

Firefly by Joss Whedon - another favorite family story is how Alex introduced our family to the series Firefly by Joss Whedon. We were in Best Buy, and Alex chose a random (or so we thought) DVD off the shelf. It was a box set of a tv series we had never heard of. Once again, we told him "no," he didn't know what he was asking for. Over several months, each time we visited Best Buy, he would go to the display and find Firefly and take it off the shelf. Eventually, we decided to let him buy it. We thought for sure he would lose interest and that he didn't know what he was asking for. Even though our family already loved Joss Whedon and were big Buffy the Vampire Slayer fans, we didn't know about Firefly. 

We watched the series when we got home. It is now a family favorite, and watching Firefly cemented our love of all things Joss Whedon.

I still don't know how Alex knew about the series, but I no longer think his choice was random. I believe he knew what he was asking for.

Two by two, hands of blue - my third story happened just recently. Alex and I were at a craft store, buying supplies for my classroom. He saw something that caught his eye, and made a bee-line for a display. It was a paper mache hand. He took it off the shelf, looked at it, then put it back. We went to another part of the store and I was looking at items I needed for my project at school. Suddenly, he turned and bolted away. I followed him, and he went back to the display of the hands. He took one, then tried to take all three from the display and put them in our cart. I only let him buy one. We then went and met John for dinner.

I told John the story, and after dinner I went to do errands and he took Alex back to Alex's house. On their way, John had to stop at a store to pick something up. It happened to be next door to the craft store with the hands. It was a good thing I had filled John in on Alex's apparent obsession with the creepy hands, because as they walked toward the tool store, Alex tried to divert John and pointed to the craft store. They did not go buy additional hands, but we do have the one at home that Alex got.

When I told Jess the story, she reminded me about the Buffy episode called Hush and "two by two, hands of blue." I'm not sure what Alex's purpose with the hand was, but I bought some craft paint and I'm going to see what color he wants to paint the hand.

Someday, I hope Alex can explain to me what he was thinking in all of these situations. I hope he can tell me how he felt about his cancer treatment. I hope he can tell me his hopes and fears. I'd even be okay with him telling me all of the times I got things wrong. 

In the meantime, I'll keep doing my best to pay attention. I'll remember the lessons I've learned when I assumed that I knew better, even though Alex was doing his best to tell me what he wanted. And maybe, just maybe, someday, we'll help him unlock all of those thoughts I know he has inside.

Reluctant Trailblazers

Before we became “cancer parents,” my husband and I were “autism parents.” We foolishly thought that the challenges we faced as parents of a child with autism would be our greatest challenge. The universe, in its infinite wisdom and with a perverse sense of humor, replied to our arrogance with “challenge accepted.” We found ourselves as parents and caregivers to a nonverbal young adult with autism and cancer.
            As soon as Alex’s cancer was diagnosed, I tried to research the combination of “cancer” and “autism” to learn how others have handled this combination. I found nothing. No resources that fit our particular set of circumstances. Once again, we found ourselves in the position of being what I’ll call “reluctant trailblazers.”
            Alex’s autism diagnosis came in 1992, and the change in the understanding of autism and the resources available between 1992 and today is difficult to comprehend. Both were in short supply in those days, and we found ourselves having to become autism experts. Throughout Alex’s school career, we learned hand in hand with his teachers, or found ourselves becoming the experts who needed to lead the charge.
            In home therapy? Nope, not available at that time. I went to workshops and seminars and took grad classes. I learned about PECS, and AAC, and ABA, and social stories and a whole host of strategies. I learned a new language of supporting someone on the autism spectrum.
Our goals were to help Alex become all that he could be. He was an integral and active member of our family and our community. We taught others about autism by having him out in the community – whether it was learning to ask for help when he had a meltdown at Disney, or asking for accommodations on an airplane or in a museum, or having him order his own food in a restaurant using an assisted technology communication device and then an app for his iPad.
ADHD and autism, OCD and autism, anxiety and autism – all of those comorbid disorders were just beginning to be understood. How and what to medicate? We had to find doctors to work with. We still drive over 100 miles to work with a psych who understands Alex and understands autism.
As Alex prepared to transition out of the school world, one I understood intimately as an elementary school teacher, we faced the unknown yet again. How could we support him in becoming as independent as possible, and in establishing a life outside of his life with us? We can’t live forever, and we fundamentally believed that Alex deserved the same thing that other young adults want and need – the ability to grow up and go out on their own.
            The system isn’t particularly suited to that goal however; at first we were told Alex wouldn’t be able to move out (with government funding) until my husband or I died or became too old or too ill to care for him. They could also fund Alex if he or our family were in crisis. The goal of providing a smooth transition to help him achieve independence wasn’t really on the radar – at first. Eventually, we got funding and found a match for Alex and he made a successful transition to a small group home. He lives with three housemates, all young men with developmental disabilities, and has around the clock care.
            We thought we had things figured out for Alex, and John and I were figuring out how to be empty nesters. Alex’s sister was out of college, engaged to be married, and working in California. Alex was transitioning well to his group home, only 20 minutes away, and we could see him often. John and I had time for hobbies. I learned to fly, and we spent most of our free time in aviation related pursuits.
            Then cancer came calling. Alex had been in his group home for just two years. He started showing strange, seemingly unrelated health issues which I now know weren’t unrelated at all. They were all pretty ambiguous, until I found a lump under his chin. Surgery and biopsy revealed Hodgkin’s Lymphoma.
            My first reaction was that visceral reaction I think everyone must feel when you hear the word “cancer.”
            Then, immediately, “how will we handle this?”
            This is a young man that it took us six years to get to tolerate a haircut without a major meltdown.
            One who took years to feel comfortable in the dentist’s chair.
            A man who has a lot of anxiety.
            A man who cannot speak for himself.
            I looked for resources for parents of nonverbal adults with autism who have cancer.
            Once again, I came up empty.
            Once again, we’d have to figure it out on our own.
            Reluctant trailblazers.
            That was over a year and a half ago. Thank goodness I couldn’t comprehend everything Alex would have to endure, but endure he did.
            He has been in remission from his Hodgkin’s Lymphoma for almost six months. He currently receives maintenance chemo once every four weeks; a short, 30-minute infusion. Labs, consult, pre-meds, and chemo only take two hours. Relatively speaking, it’s a walk in the park. I can’t believe this new world where we live in that a two-hour chemo appointment every four weeks seems minimal.
            His front line chemo, 12 ABVD treatments over the course of six months, failed. After that, he went to autologous stem cell transplant at Froedtert. His “re-birthday” was December 28 – transplant day. We’re half-way through sixteen months of maintenance treatment.
            We had to be his advocates, and work with the medical professionals to figure out how his treatment plan was going to work. When Alex was a little boy and he needed a shot, we could hold him down. That wasn’t going to work with a grown man.
            We have had some bumps along the way. His treatment plan has required adjustments and modifications. It has been a true team approach, with Alex always at the center.
            We aren’t just his parents anymore; we are his legal guardians. It is our responsibility to make his medical choices for him. At times, that feels overwhelming. Are we choosing for him what he would choose for himself if he could?
            In the hospital, we taught his doctors and nurses what Alex’s autism was all about. They were excellent listeners and quick learners. We were there to be his voice and his interpreters. 
            What are some ways that Alex’s autism has impacted his treatment? There are so many. From the simple – he can’t answer the questions about how to rate his pain on the pain scale and we can’t convince him to measure his output in the bathroom, to the complex – he has to be sedated for every PET and CT scan, he has pulled out PICC lines and IVs when he wasn’t being watched, he can’t be left alone in his hospital room so he had to have someone with him around the clock which was, for the majority of the time in the last year and a half, my husband and/or me, we try to have at least two people with him during chemo and procedures in case someone needs to go to the bathroom or get food, and more.
            We’ve had to learn what the procedures are so that we could adequately let the doctors know what accommodations would be needed. We had to be able to prepare Alex so he would know what to expect. We had to convince doctors to let one or both of us in procedure rooms because we knew that was the only way the procedure would get done.
“If you want to stick a catheter in his jugular while he’s awake, you’re going to need one of us there holding his hand otherwise, good luck with that.”
“Leave a catheter inserted in his jugular and send us back to the hotel room and come back for another round of stem cell collection tomorrow? Umm – no.” So they took it out and reinstalled it again the next day. Typical procedure? No. Preferred procedure? Definitely no. But it’s what needed to happen for Alex.
Thanks goodness for a transplant coordinator, doctors, PA’s and nurses who were willing to listen. Together, we figured it out. Some issues we predicted; some surprises came along the way and we dealt with them as they came.
            So now we can add cancer experts to our resume. We never found that website, or pamphlet, or book that told us how that would all work. I suppose we could write it now.
            Next step – living as a cancer survivor and getting back to the work of letting him grow up and become more independent.  
            I confess I’m not even comfortable using the word “survivor” yet, like I don’t know if I’m tempting fate to smite us down for even daring to use the word. But, at least for now, he’s in remission, and we’re figuring out this new normal. He’s back in his group home, going places with his housemates, going to his part-time job, and getting stronger day by day. And we’re back to trying to learn to let go.