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Mar
10

"There is No Cure for Autism:" A Mother’s Journey with Her Son


Photo of Daniel with student Dylan back in the year 2001

Audio version of this blog
 (8 minutes 35 seconds)


Derek would scratch, hit, scream, and was unable to remain still for more than a fraction of a second at a time. It was May of 2000. It was 22 short years ago and it was the beginning of an experience that would shape the next two decades of both my professional and personal lives and would help to continually reignite the passion in me to keep going in this challenging educational work, year after year. 

I was still an undergrad at Purdue and my side-jobs as a paraprofessional, respite worker, camp counselor, and Big Brothers volunteer all had me so frustrated in the missed potential I perceived in many of the older students and adults I worked with, that I quit all of my part-time jobs and started a behavioral consulting service for young children on the autism spectrum. One of my very first clients was Lianna, the loving, smart, determined, caring, patient, and strong mother of Derek. It is with great honor that I welcome Lianna as my guest blogger this week who graciously shares a portion of her journey! 

Young Derek holding a purple stuff bear
Things were normal until just after he turned two years old. He started displaying some odd behaviors, like staring at his hands and flapping them. If he didn't recognize a person, he would start screaming until the person left. When his dad took off his eyeglasses, Derek would start screaming and it would take a considerable amount of time for him to settle again. There were a lot of behavioral issues, including scratching himself and hitting his siblings because he still couldn't talk. I thought he was just a late talker, and I expressed my concern to his pediatrician, who gave us a referral to a neurologist. At the next doctor’s appointment, the pediatrician gave us the diagnosis of “Severe Autism with Mental Retardation.” That was 1998 and I had never heard of autism before, so I asked his pediatrician what the cure for it was. With a sad face, I remembered what he said to me vividly: “Mrs. Dawson, there is no cure for autism, you have to prepare yourself that your son might live in an institution because he will be hard to handle for you later on.” That was the last time we saw his pediatrician or any doctor.

I immersed myself in finding a cure or at least, how to help improve my son’s berserk behavior. I lived and breathed autism. The Barnes and Noble bookstore became our favorite place to visit until I stumbled upon one particular book on behavior intervention for young children with autism. That book became my bible. Luckily, we lived one town away from Purdue University and I put an ad in the Purdue Exponent newspaper. I started hiring Purdue University Special Education pre-service teachers and Speech, Occupational Therapy, and art students. This is when I met Daniel McNulty, a special-education pre-service student, along with some other bright students who were willing to make a difference in Derek’s life. Daniel McNulty facilitated the Applied Behavioral Analysis (ABA) with Derek when ABA was not even known or accepted in a school setting. It is not easy to implement, especially with a child who lives his own little world. Pulling him out of that world and his autism-related behaviors, I pictured was like pulling him out of a darkness filled with repetitive and odd behaviors. This was not an easy task for Daniel McNulty or for myself. Daniel seemed a miracle worker, rewarding Derek’s positive behavior with popcorn and other tangible items that Derek preferred at the time. He started sitting at the table and doing the short tasks that he was prompted to do, starting with things like clapping his hands, pointing to letter sounds of the alphabet, and identifying colors.

It was a long, dark, difficult road ahead, full of twists and turns. I was a desperate mother who was desperate to give my son the best chances in life that I could! I integrated different approaches, as to not leave any stone unturned. Applied Behavioral Analysis, Auditory Integration training, speech therapy, occupational therapy, and Gluten-free and Casein-free diet. Following his diagnosis, I started seeing a naturopathic doctor who did some biofeedback along with lots of vitamin therapy. It turned out that Daniel McNulty accepted a classroom teaching position in the school corporation that would be where Derek attended Kindergarten through 12th grade, which meant that Daniel wrote Derek's Individualized Education Program (IEP) goals and ensured that the appropriate accommodations and assistive technologies were in place! This also meant that Derek never had the same sort of summer vacation as many other kids. His school sent a teacher to our house all summer long for extended school year services to help compensate for the lack of progress during the school year. We were very lucky to be living in a good school district that wanted the best for Derek, as we did. 

Derek standing in wrestling stance, facing an opponent in high school wrestling

Fast-forwarding through substantial behavioral therapies and other educational services, and never-ending hope, high expectations, and perseverance; Derek graduated last year with a degree in Mechanical Engineering Technology at the age of 24 from one of the best engineering schools in the country, Purdue University. There were a lot of challenges along the way, but somehow, we managed to get through them, one by one, and to conquer that uphill battle. I always told Derek that he was a warrior and I called him Victor. From the background, in the stands, I always cheered him on with “Go, Victor!” I'm sure some people thought I must have had two sons out there! Derek always asked me why I called him Victor, especially when he was wrestling (his favorite sport, which he was great at, and perhaps channeled some of his aggression onto the mat). I told him I called him Victor because he is my warrior and while this road is full of barriers, he will be victorious. I told him he is one in a million and he is very lucky, that not all kids with autism are afforded the opportunity to overcome their challenges and function independently as he does. I thank God, that I met his angels like Daniel McNulty, Shelly K., and Betty R., who introduced me to a holistic approach to autism. Without these people who helped pulled him out of the dark, he probably wouldn’t be living independently now. 

Derek sitting in Purdue University cap and gownDerek standing in front of a massive Caterpillar dump truck
Autism is not a life sentence as I once thought it to be and as our pediatrician made it out to be. It may not be an easy journey and there will be times of seemingly insurmountable challenges, but those make the victories that much sweeter as well. Derek is now working in engineering for Caterpillar, the world’s leading manufacturer of construction and mining equipment, off-highway diesel and natural gas engines, industrial gas turbines and diesel-electric locomotives, and lives independently out of state! When I talk to Derek on the phone now, he complains that he has a lot of meetings and big projects at work. I just smile in deep gratitude for that, and in my mind, I scream, "yes, Victor!

Derek standing with his mom, Lianna, in front of the Purdue Engineering fountain
For all the parents, family members, and educators that are a part of the critical team supporting a "Victor," do not give up. You are probably the strongest advocate and the biggest voice for your children. There is hope!  Derek is the living proof of it. Seek out resources and help, as it's out there for you! Search for Daniel McNultys, the Shelly K's, the Betty R's, and the many tools and resources that are available through organizations like PATINS

Derek's IEPs always included accommodations for text-to-speech (TTS), word-prediction, graphic organizers, reduced verbal instructions, extra time, and additional non-verbal prompts when needed, and others! While some people viewed these accommodations as "cheating" or "lowering expectations," Derek's amazing success as a young adult and highly productive professional member of society is proof that these accommodations actually facilitated setting and achieving incredibly high expectations for a once young, non-verbal, physically aggressive child who was not able to focus!" 


PATINS
1. Lending Library of Assistive Technology 
2. Training and Professional Development Specialists
3. AEMing for Achievement Grant (Open now, Closes May 30th)
4. Statewide Conferences in November and April (Tech Expo Registration Open Now) 


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Mar
03

You Have The Superpower!

Turtle Drawing of a turtle

Guest Blogger! I cannot thank Mark Pruett enough for sharing his personal experiences on the power of what educators can bring to the classroom that can change the trajectory of students’ lives. The recording of him reading his blog definitely makes this blog an experience through storytelling. ?

Mark resides in Nashville, TN and is a successful editor for television for over 36 years. Along the way he bought a farm in Tennessee and has fallen in love with working outdoors. These days he splits his time between the computer and the table saw…continuing to be creative.

 Mark Pruett sitting on rock with a dogMark Pruett sitting on rock with a dog             QR code to audio versionsQR code to audio versions

Artist Name - Turtles.mp3

It’s been almost fifty years, but I’ve never forgotten what it was I wanted to paint. The why of it is lost to time and the odd fixations of an eight year old, but I definitely remember wanting, more than anything, to use that particular art class to paint a turtle in the rain. To this day, I can still recall my childhood vision, a heroic turtle on a rock in the pouring rain. Why a turtle, why heroic, why for heaven’s sake in the rain? Go figure. For some kids, it’s their dog or a firetruck or a lego set. Let’s just say that at eight, my thing was turtles. It’s at this point my mother, if she were listening to me tell the story, would chime in to tell you about the time I lost a turtle on an airplane. “Excuse me ladies and gentlemen, please do us a favor and check under your seats. It seems a young man has lost his turtle.” Some things you never live down. 

Of course, at eight years old I knew very little about art and what it might take to make my vision of a heroic rainy day reptile a reality. Some of my friends constantly filled margins of notebooks with doodles, but that wasn’t my thing. I’m not even sure I was what you might have described as an “artistic” child. So, I wasn’t terribly aware that the log of a paint brush, larger around than my childhood thumb, wasn’t a good instrument for fine art. Not that a better brush would have made a big difference, but equipping a kid with what was essentially a house painter’s tool certainly didn’t help. And we didn’t have a huge variety of paint colors to choose from, jars of mostly primary hues along with some eye searing tones like Pepto-Bismol pink. There were plastic jugs with blue and black on my table, other jars scattered around the classroom to experiment with, and I remember going at the project with gusto. 

I hate to say it, but childhood gusto and a paint brush better suited to whitewashing fence posts didn’t get me where I wanted to go. I ended up with a dark un-turtle like mess in the middle of the page and big blue “dots” of color blobbed all over for rain, but that’s not why I really remember that day. My teacher, Ms. Allen, asked me what I was trying to do and then she took my work and held it up for all the class to see, as a failed assignment. It seems that I was supposed to fill the page with color and not leave any white, so she showed my painting to the class and told them I couldn’t follow direction. Oh, and she said that I might not have much skill as a painter either.

It took another fifteen years and a close friend forcing me to go through “Drawing on the Right Side of the Brain,” for me to realize that I actually could learn to draw or paint. That one experience in grade school made me believe I had no talent.

Everyday, when you walk into the classroom, you have more influence than you realize. You might call it your superpower. The things you say and the care you invest can have an impact that lasts years, perhaps a lifetime. At eight, I was a painfully shy child. My parents had split a few years earlier and I didn’t have the best sense of self esteem. Like the young person I was fifty years ago, there are children in your classrooms, at this very moment, going through life events they aren’t equipped to handle. You really can make a difference and every class is another opportunity. Your presence can be the difference that helps a young person feel better about themselves, and maybe helps a child discover something in the learning process that sparks a new sense of enthusiasm. 

Be that spark, as a teacher embrace your superpower. It doesn’t always take a lot, a supportive word at the right moment or taking some extra time for one-on-one interaction. Think back for a moment to the adults who were kind influences on you as a young person. Be that person and pay it forward, one day a young adult may look back and realize that you changed their life. You can make that memory one to treasure.

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Feb
27

The Lenses Adjust The View

Photo collage of four pairs of glasses:  paper 3D, yellow lenses in reading glasses, round rimmed glasses and safety glasses


This week I was reminded that the lenses one looks through, adjust your view. Each year, I visit the optometrist to check my eye health and see if the vision in my eyes has changed any in the last year. The results are typically one of 3 things: 

  1. Vision unchanged and no new prescription
  2. Vision improved, new prescription needed
  3. Vision worsened, new prescription needed

I could even consider new or colored contacts, at this annual visit, which adds another type of lens to consider after my annual check up!

While watching a photographer/videographer friend’s YouTube channel, as he was showcasing a Stream Deck for streaming and productivity, I realized the lens I viewed this equipment with had changed over time. Originally, I used a Stream Deck with OBS (Open Broadcaster Software) for live streaming, for projects unrelated to school based therapy. Then, I moved to the option of using shortcuts to allow a student to press one button and land on the page they needed during instruction, rather than typing out the most common web pages she needed in class.

After viewing my friend’s video, I am reminded of all the options that are available for productivity and shortcuts that can be set up with a Stream Deck by Elgato. Using a device as the manufacturer intended is great, but what if it can be used to increase productivity or increase access to a student’s curriculum? One tip he reminded me of was that one can set up a group of websites that will launch in one window. Another is that a user can have a direct link to their storage drive or email that would allow the student to already be logged in. As an educator or therapist, do you have students that shortcuts like this would work well for? 

I am thankful for a different lens to view this valuable technology! The PATINS Project Lending Library has both a Stream Deck 15 and a mini available for loan, along with thousands of other resources to help Indiana’s students. Indiana’s educators are able to check out resources for a 6 week loan to gather data and see if the tool is a good fit for the student’s needs.

Myself or any of our PATINS Specialists are available to assist with set up and training for use of a Stream Deck, or any other Lending Library loan that an Indiana educator would like to trial as Assistive Technology or use the view of the Universal Design for Learning lens. Reach out to us today!

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