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Promoting Achievement through Technology and INstruction for all Students
Mar
09

"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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Apr
23

Big Dreams, Small Spaces

laughing child sitting in a garden with purple catmint blooming
I hope this blog finds you healthy and coping well with this not-in-Kansas-anymore life. I was looking at my work calendar from a couple of months ago, and looked at an entry where I traveled, and thought, “Logansport seems like a distant universe.” 

Many of us are escaping to places (other than our snack stations) by watching Netflix. We are all sharing the shows we’ve been bingeing on the streaming platforms. It is spring on our farm, and I am re-watching my favorite British gardening show. 

“Big Dreams, Small Spaces” follows the famous British gardener, Monty Don who guides 2 different garden makeovers per episode. (He’s also an excellent follow on Instagram if you like dreamy garden images.) On the show, the participants share their ideas for a dream garden in their tiny backyard, and Monty checks in over the course of a year to counsel them, and lend some hands-on help. It is the opposite of sensational--there are no bodies found buried in the gardens. There are no cash prizes, and the often very small budgets are footed by the gardeners. 

British gardening guru Monty Don holding a watering can in his garden with his 2 golden retrievers at his side

But many of their dreams are indeed big, including turning their back garden into an enchanted forest, or creating a community vegetable garden for their neighbors. One of my favorites is an episode where parents are designing a garden for their son who has a disability. 

It would be fair to say it is boring, but I also would describe it as compelling. Watching someone dig their own pond with a shovel, and hearing them describe how it has helped them battle depression is a medicine that is working for me as I look for hope wherever it can be found.

My PATINS stakeholders who are contacting me are living in their own “Small Spaces” right now. But like the gardeners, they are dreaming big of taking their limited resources and turning them into a thing of beauty. They are forging stronger relationships with their students’ parents, spending hours communicating how to take their child with blindness on a mobility scavenger hunt, or how to enter math homework using a screen reader. They, like Monty Don and his gardeners, are giving me hope that continuous learning will grow and evolve into something surprisingly lovely. 

At PATINS we’re here to support your big dreams in small spaces. Check out our special resource page or visit our daily office hours with your questions and impossible ideas. 

I'll make the tea. (I guess you'll have to make your own tea if we meet on Zoom. . . but you get the sentiment.)

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Feb
28

March Towards Hope

March Towards Hope

The calendar has some quirky coincidences in 2018. The somber first day of lent, Ash Wednesday, when folks in the Christian faith acknowledge that yes, they are
going to die, fell on Valentine's Day: a frivolous celebration of worldly love. Easter is on April 1 this year. I don’t envy the ministers and theologians who will have to work on that Sunday. It seems like they’ll have some extra explaining to do. And now my turn to write the PATINS blog falls on March 1st. Ugh.


Not true everywhere, but in Indiana March is the worst month. Don’t let that iconic shamrock on the calendar fool you, there isn’t much green to be found anywhere. We’re surrounded by gray skies, flat beige landscapes, and still wearing thick socks. In March, there might be a 70 degree day or two where you are lulled into thinking winter is loosening, but it will be followed by a lockdown-drill of freezing rain.

road 2125828 960 720 2
There is the big basketball tournament to distract us, but as I write this, Purdue has dropped from the top of the Big 10 standings, and it seems that having not one but two 7-footers on the team wasn’t enough to propel the Boilermakers from our mid season winning streak to tournament favorites. I blame March in the midwest. I know, not rational, because all Big 10 teams are in the midwest, but before you all message me and gently suggest that maybe Bev needs some medication, I’ll let you know that I do have strategies for surviving March.

First, seed catalogs = hope. Slowly page through them and drink in the colors. Or, while you’re at the home improvement store finding replacement parts for your sump pump (March floods) stop by the display of seed packets, pull out a packet, gently shake it by your ear and hear the sound of presumed life. My second strategy is to pretend I’m somewhere else; otherwise known as Mr. Rogers make believe medicine (I know, maybe consider medication). I put on my colorful bathing suit, lime green swim cap, and swim at the Y once or twice a week. And I imagine that the water is heated by a tropical sun. This week: Belize. My final strategy was a gift given to me by my friend Kelly. She created a Pinterest board for me called “March Madness Prevention” and she posts images or links to my favorite things: Bugs Bunny cartoons, snapdragons, and porch swings, to name a few.

The PATINS blog calendar lottery has also slotted me into a point in time where schools and teachers are looking out at what could be described as a bleak landscape. Fear seems to have enveloped schools, and infected the debate about how to keep all safe in the sacred space of the classroom. I’ve laid awake at night with the debate about violence in schools ricocheting around my brain, but haven’t been able to come up with much that doesn’t sound like more noise.

I’ve decided to follow Kelly’s lead to offer you a Pinterest board of sorts to share some images of hope. As a PATINS specialist I am in and out of many Indiana schools each week, and I see so many lovely things happening despite all that seems against us. Here are a few snapshots of hope happening in schools. Right now. Despite March:
  • My colleagues in Bluffton who work every day to hold high expectations for all and ensure that each child in the room has a voice. Follow the joy: @asheetsroom14 on Twitter.
  • An art teacher friend shares this story
painting created by high school student of bare trees with snow and shadows
  • One kindergartener telling another to take a deep breath when they can’t seem to figure out the reader app I’m teaching them. I followed her lead.
  • Students from STEM and robotics clubs finding solutions for students needing them. I was fortunate to meet members of the Mishawaka Penn High School Robotics Club who presented at a national assistive technology conference.
  • Pre-teacher in a Butler training determined to reach middle-schoolers, despite showing a depth of understanding of the middle school psyche. Felt like a hope earthquake under my feet.
  • Students at the Indiana School for the Blind and Visually Impaired discovering healthier food by massaging kale with avocado, and planning a new cafeteria garden on their campus. (I repeat, seeds = hope)
If you have an image of hope, please share in the comments!

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