(1% indicates location in the Kindle version of the book, instead of page numbers.)
< Excerpts from Ron’s (Ben’s dad) Author Note >
1% First of all, if you picked this book expecting to read a story about how a theme park attraction miraculously cured an autistic boy then you are going to be sadly disappointed. Although Ben’s time spent with Snow White’s Scary Adventures had a dramatic and positive effect on him, at nineteen years old he still remains a profoundly disabled individual. He continues to require full-time supervision and is thus far completely incapable of living independently. Every single penny of any revenue this book generates will go directly into Ben’s Special Needs Trust to provide for his long term care. Next, although this is Ben’s story, it is by necessity told from my perspective.
2% Much of this book has been constructed based on contemporaneous journal entries or blog posts I wrote at the time these things happened. A significant part of this book is based purely on my (author Ron Miles) memories of past events.
While it was Walt Disney World and Snow White’s Scary Adventures that provided the fulcrum to move Ben’s world, to a very large degree it has been the dedicated educators who have given us the lever to take advantage of that opportunity.
< End of excerpts from Ron’s (Ben’s dad) Author Note >
< My Thoughts >
This was an ode to Disney and a magical place and a magical boy named Ben. Much of this book has been constructed based on contemporaneous journal entries. Many parents keep a journal of their journey with autism.
< Excerpts from Ron’s book >
2% Benjamin was a genuine Christmas gift delivered by C-section the day after Christmas.
4% The next six months passed exactly as you would imagine, with diapers and bottles and many sleep-deprived nights. Ben was a normal happy infant and we were a normal happy-but-exhausted family. Then one day I was unceremoniously fired from my job. The first crack in the dam of our marriage.
Three months later I was still under-employed and we were subsisting on part-time jobs. At nine months began to be concerned about Ben’s development. He was lagging behind on some of the standard metrics. He was not displaying the kind of cognitive and sensory skills that are expected by that age.
Ben’s pediatrician assured us that while Ben was certainly on the low end of the bell curve…it wasn’t that unusual and every child is unique and progresses at their own rate.
5% At Ben’s twelve month check-up he showed no significant improvement over his nine-month exam. By now the pediatrician was genuinely concerned and referred us to specialists for additional testing.
At the word “Autism”, my entire body went numb. I didn’t even know what autism was. Rainman? The Boy Who Could Fly?”
We soon discovered that autism is a neurodevelopmental disorder in which, for some reason, the brain does not build the same kind of neural connections that happen in a “normal brain.”
This effects how the brain processes information by altering the way that nerve cells and their synapses connect and organize.
The result is a person with impaired social interaction skills and with significant sensory integration issues.
Autism is also referred to as a “spectrum disorder”, meaning that the severity of symptoms exist on a curve.
< My Thoughts > “…a “spectrum disorder”, meaning that the severity of symptoms exist on a curve.”
This usually means… high functioning or low functioning as compared to a neurotypical child or adult of similar age, plus comparison to a position within the range of symptoms on the ‘curve’. Within the symptoms of autism, you may find an additional co-existing symptom, such as ‘Obsessive Compulsive Disorder’, or ‘Depression’ which may within itself be from extremely to moderately incapacitating, thus affecting the functioning of the person with autism.
5% A high functioning autistic might be able to function fully independently as an adult while still having difficulty managing social interaction.
A low functioning autistic would likely never be able to function independently and would require 24-hour supervision for their entire life.
At that point we did not know where on the spectrum Ben would fall, but our doctors told us that early intervention could dramatically improve the outcome.
We began speech and physical therapy right way, but our family was devastated.
< My Thoughts > “Early intervention…We began speech and physical therapy right way…”
How do parents know which intervention to start, or if that intervention is working? In Berquist, & Charlop (2014) they speak of a study which did a ‘Parent Interview’ where parents were asked three general, open-ended questions about their decision-making patterns with regards to their child’s interventions. The baseline questions were as follows: “How do you currently determine if your child’s program is effective or not?” “How do you decide which treatments to try and which to avoid?” And “What factors most convince you to start an intervention or stop one?”
This was an educational program for parents and all participants in the experimental group increased in their evaluative behaviors…” After participating in the parent education which helped them learn to answer the above questions. This included not only their child’s acquisition of skills, as well as generalization of skills across various settings. In other words, if their child remembered and used their new skills both at home and at school. In addition, parents learned to recognize how to evaluate when their child’s needs changed and new treatments were needed to increase abilities.
5% Our beautiful boy couldn’t talk, wouldn’t make eye contact, and was frequently inconsolable.
It was a constant struggle to simply get through the day. Ben still wasn’t sleeping with any regularity, and when he was awake he was like the Energizer Bunny – just going, and going, and going…
I began to sink into depression and the cracks in our marriage grew. It was a matter of “too much, too soon” for a relationship that had not had enough time to build any real foundation.
< My Thoughts > “….the cracks in our marriage grew.”
Wong & Kwan (2010) found research that has shown that parents of children with autism are at a higher risk for stress. “Possibly as a result of having to deal with the child’s impairments in communication, difficult behaviors, social isolation, difficulties in self-care, and lack of understanding.”
“This is understandable as stress might result from their inability to relate with their children who do not show much interaction with them. Plus the inability to communicate with their children who did not have functional language, and whose problematic behavior such as – self-injurious behavior, head-banging and aggression, or severe tantrums could not be managed.”
6% One year later, our marriage was over. Despite the failure of our marriage, Sara and I did go on to build a very successful parenting relationship.
We had a standard court-ordered parenting plan. We fell into the rhythm of Ben being with his mom during the week and with me on weekends.
Although Ben was completely non-verbal, he was happy and affectionate, and it was clear that he felt completely loved and supported despite his fractured household.
It was during this time period that Ben’s love for Disney began to emerge.
When he was perhaps five years old, his maternal grandmother gave him a large plush Sorcerer Mickey Mouse doll for the Disney movie Fantasia.
He carried it with him everywhere. Although Ben would still not make direct eye contact with anyone for more than a split second, in Sorcerer Mickey he seemed to have found a best friend.
7% When traveling between households he would bring tote bags filled with Disney video tapes. He would play “The Sorcerer’s Apprentice” on an endless loop.
< My Thoughts >
I have heard parents say that they even use certain dialogue from their favorite video to tell their child what is needed. Sometimes I say to counter Sonny’s defiance… “I have a laser, and I will use it!” from Buzz Lightyear.
10% Ben’s first big vocal breakthrough was through was thanks to his love of Disney music. I would sing to him constantly. We were out one day, sitting next to each other on a bench.
From his favorite song “Bare Necessities” I sang “Look for the…” and for some reason, I hesitated for a moment.
Out of the blue, Ben said “prsch.” Was he trying to say “bear?”
In his seven years, I had never heard him attempt to speak an actual word, but there it was.
I continued with “…necessities, forget about your worries and your “strph!” Oh my God, he was actually talking.
< My Thoughts >
You can sit with your child and watch, interact with certain parts and even model certain behaviors. Yes, it takes a bit of creativity, but your child is already hooked and attentive… so, why not take advantage. Smiles.
8% Time went by. He grew older but still did not speak. Oh, he vocalized endlessly – a nonstop barrage of babbling, screeching, honking noises – but no actual words.
His first language turned out to be rudimentary sign language. He learned to sign “I want,” “please,” and “thank you” and he began learning a few other words to fill in the blanks.
The quickest phrase he learned to sign was “I want candy, please!” I was so thrilled I bought him a big bag of candy…right then and there.
< My Thoughts >
Retrieved from: https://www.speechandlanguagekids.com/using-sign-language/
Research shows that both in younger and older children, sign- language can help the ‘speech and language delayed’ communicate, thus alleviating stress and frustration when trying to have needs met. You don’t have to sign every word; only the ones which help you and the child get needs met. And in this article, they say that you can start signing at a few months old, in addition to teaching verbal language.
8% His diet in general had become an increasing concern. The only thing he would drink was red Gatorade and then from a very specific Sippy cup.
< My Thoughts > “His diet in general had become an increasing concern. The only thing he would drink was red Gatorade and then from a very specific Sippy cup.”
This is a common cry among parents. Sonny, over time has found cups he prefers, after years of Sippy cups. The current cup looks like a Mason jar with a straw through the top. We have to wrap a rubber band around the straw just below the cap so he doesn’t suck the straw right out of the top…thus saving a mess.
Between Sippy cups and kiddy Mason-jar cups there were the dome-top Slurpy cups and straws from 7-11 or McDonald’s. You can imagine how we managed to pull that off. “No really, I just want to buy the cup and the oversize straw… No, I don’t want anything in it.” This is how he drinks his milk…you can’t put anything else in it. He loves Diet Pepsi, but only drinks it from the bottle with a straw. We drilled a straw hole in the cap and use the Slurpy straw. Really…it’s not that complicated and besides it keeps the peace.
When Sonny goes on strike from eating his traditional Mac & Cheese and P & J crustless sandwiches, we created blender drinks with breakfast drink, cashew butter and almond milk for better nutritional intake. If we introduce it gradually he still catches on but doesn’t object.
8% As for food, he steadfastly refused to eat anything that wasn’t round.
< My Thoughts > “…refused to eat anything that wasn’t round.”
“Why do you cut the crusts off his bread?” people ask. “Because we started seeing the crusts lying around the house,” we answer. You see, Sonny won’t sit down to eat, not since his last Grand Mal seizure, which happened to occur as he sat down to eat. So now he eats on the run, which is why we would find the crusts lying around the house. Ugh! How did he do that? Eat everything but the crust? A question we often asked ourselves.
8% Fortunately he would eat grapes, rice cakes with peanut butter smeared on them and hot dogs cut into round discs.
< My Thoughts > “Fortunately he would eat grapes, rice cakes with peanut butter smeared on them and hot dogs cut into round discs.”
Yikes!!! Grapes and hot dogs cut into discs is dangerous as they can so easily get stuck in their windpipe. Make another cut in the food so it still looks round but will come apart if swallowed without chewing. So many kiddos suck their food rather than chew. This makes it very dangerous and unless you are watching carefully, children can silently choke.
8% No amount of starvation or withholding would overcome his anxiety. He would not eat anything new or different no matter how hard we tried.
< My Thoughts > “He would not eat anything new or different no matter how hard we tried.”
One parent complained to me that her son only ate Mac & Cheese for a whole month. A whole month… I thought to myself… that’s all Sonny would eat for a whole year! Fortunately we were able to introduce small bits of cooked ground turkey into the mix so he could get more protein.
Forgive me, but you have my permission to yell at anyone who tells you… “If he gets hungry enough, he will eat.” No, he won’t!
8% His sleeping patterns remained equally obstinate. He would run like a machine all day long and well into the night.
Bedtime was a daily disaster. It was not unusual for him to be wide awake until two or three in the morning, only to wake up again before sunrise.
9% Oftentimes he would seem to fall asleep, only to reawaken for a few minutes later to jump out of bed and start turning on every light in the house.
< My Thoughts > “…jump out of bed and start turning on every light in the house.”
Our young man sleeps with the fan on, and the TV and the lights on all night long. If you attempt to turn them off after he falls asleep…he sits straight up in bed and starts pointing at the offense.
The sleep thing really takes creativity and planning. What makes it worse for us is that Sonny has a seizure disorder which when not being properly treated, causes him to have seizures all night long. Very scary, then.
9% On the whole, he was a very happy and affectionate boy; he was just exhausting to care for. Every day we looked for the little triumphs and hoped for the little triumphs, and hoped for the big breakthroughs.
< My Thoughts > “…he was a very happy and affectionate boy…”
When a child with autism is for the most part happy and affectionate, that within itself can be a problem because no one sees the efforts and constant vigilance it takes to sustain their happiness and keep tears and tantrums at a distance. Also, doctors are thrown off by this ‘happy child’ who doesn’t ‘seem’ autistic at all.
11% My wife’s childhood, growing up in Florida included regular trips to Walt Disney World. Although we had been to Disneyland in California a few times and had some happy memories, we both dreamed of taking our child on his first trip to a Disney park and we decided that maybe it was time to try. And so it was that we made our first fateful trip to Orlando. Because Ben loved Fantasia so much, we considered booking rooms at the All Star Movies resort at Walt Disney World. The hotel features a Fantasia-themed building complete with a Sorcerer’s Apprentice themed swimming pool.
12% So the day arrived and we made our way to the airport with Ben and all the supplies you need with a non-potty trained eight-year-old. Of course, we were selected for extra screening. “Look,” I pleaded, “I’m not trying to be difficult. Our son is autistic. He doesn’t understand what you are asking him to do. If he is not holding either my hand or his mother’s hand, he may very well run off and hide.” Eventually the security guards were satisfied that we were not terrorists and we were allowed to proceed to our plane.
14% For our vacation we had four touring days with a travel day on each side. We really had no idea whether Ben would love the experience or be driven insane by all the stimulation. But the next morning we boarded a shuttle bus to the Magic Kingdom. For his part, Ben just seemed mostly confused.
As we walked onto Main Street, Sara holding his right hand and I holding his left, Ben suddenly went rigid. There in front of him was Cinderella Castle. He had watched this scene a million times on his video tapes, and suddenly it was right in front of him in the real world.
What should have seemed overwhelming to him, instead seemed to make him blissfully happy and simply at home.
17% We stood in front of a mural – a lush painting depicting Snow White and all seven dwarfs … with Prince Charming holding the reins of his proud white stallion. Ben thought the mural was nice, but he had no idea why we were standing in line.
Eventually we reached the loading area and were ushered into a mine cart ride vehicle. As we rolled past the Wishing Well and made the first big turn, Ben suddenly perked up. There was Snow White, sitting in rags on the castle steps, scrubbing the stone…
19% Our first day at the Magic Kingdom carried on in much the same way, although none of the rides were quite so dramatically engaging to Ben.
Ben was immediately taken in… he was being presented with many of his favorite audio cues from one of his favorite movies. Onward we rolled, into the Queen’s dungeon. Benjamin was positively glowing with excitement… the Huntsman was pleading with Snow White to run and hide. Ben urged her emphatically, “Go! Go!!!”
Ben was practically vibrating with intense joy and engagement… he was living inside one of his movies.
The music surged on the final turn… the dwarfs were waving goodbye to Snow White and Prince Charming as the young couple rode off…
Ben was so happy he hardly knew what to do with himself. His first ride at Walt Disney World – his first ride on Snow White’s Scary Adventures.
22% For our final day of vacation we returned to the Magic Kingdom. Not surprisingly the first place Ben wanted to go was Snow White’s Scary Adventures for several more rides.
A few hours later, we found ourselves stopping for lunch. As we sat eating, I got out the digital camera to show Ben pictures of the different rides. Up until this point in the trip, he had remained largely non-verbal. Looking at those pictures, however he started naming the rides… “Snow White!!”
His mother and I were stunned, we had been thrilled with how much he was enjoying the trip, but having him spontaneously speak was completely unprecedented… We were both nearly in tears.
That was when I knew right down to my core that Walt Disney World was the single biggest piece of magic that had ever entered Ben’s life.
23% Spring turned into summer, and the difference between Ben-At Disney and Ben-In-The-Real-World was very stark indeed. The difference between his maddening behaviors and him skipping his way through the Magic Kingdom and I began to wonder if maybe he actually belonged there.
24% I tentatively brought it up with Sara… Should we uproot both households and move to the opposite corner of the country so that our profoundly disabled child could go play in the Magic Kingdom year round? It seemed ludicrous, yet neither of us could get it out of our heads.
The only rational thing to do would be to plan a second vacation to Walt Disney World and see if he showed the same response again. If he didn’t then no harm, no foul. We would have an answer and abandon the idea of the move. If he did, then we would start making concrete plans.
Meanwhile, we struggled to work with doctors to find the correct balance of medications to help him be happier and less anxious without turning him into a drugged-out zombie.
27% In the blink of an eye it was time for our second visit to Walt Disney World. Finally, we arrived in Florida, gathered up our bags, and took the shuttle once again to check into our hotel. Ben slept like a rock that night and finally dragged him out of bed at 11am.
The bus ride to the park was only about 10 minutes, and as we arrived at the main gate, the overcast sky turned to rain. It didn’t matter to Ben; he was thrilled to be there. We took a horse-driven carriage up Main Street to the foot of Cinderella’s Castle. At that point, he knew exactly where he was… and he knew where he wanted to be – Snow White’s Scary Adventures. He was overjoyed to see his ride again.
After lunch we were going to head back to the hotel, but Ben had other plans. He made a beeline for Snow White.
36% With that final ride on Snow White’s Scary Adventures, we exited the park and headed back for the hotel. Ben was happy and talkative the whole way, which was such a delightful change over the previous two days.
38% Having Ben communicate where he wanted to go in that last hour, combined with his identifying of the pictures by name on the camera, cemented in my mind that moving here was the right thing to do.
I saw Walt Disney World as a massive lever that could move his world and teach him social interaction on a grand scale.
39% After we returned home, Ben’s expressive language seemed to have stalled. There was no doubt remaining that we would all be moving to Central Florida before the end of the year.
41% Our last few months in Seattle flew by, and at the end of June we also reached the end of the school year and Ben’s last day at school.
42% Over those several months, in preparation for our move to Florida, Ben’s teacher Lisa had gone above and beyond the call of duty not only by compiling all of her data to pass on to the new school district, but also in videotaping Ben in the classroom so that his new teachers would have a clearer understanding of what he was capable of and what he was working towards.
Ben’s mother had already found a new home directly to the northeast of the Disney property. I opted for an apartment to the southwest of Disney. Each of the apartments would become available on the first of August. I took a week to drive our things across country, while Ben and Sara flew directly to Orlando.
43% When I knocked on the door Sara answered I could hear Ben vocalizing inside. As soon as I stepped into the room Ben got a huge smile on his face, delighted to see me. Then he suddenly realized that he was mad at me for disappearing for over a week. He proceeded to spend the next fifteen minutes pointedly avoiding me while glancing over and smiling from time to time.
44% Ben and I went for a drive to explore the area. He was just as interested in exploring as I was and we began to get a general idea of where things were. A few hours later we met Sara at the gates of the Magic Kingdom. It was raining, but Ben was undaunted and led us directly to Snow White’s Scary Adventures.
47% “Mama/Daddy, I want more Snow White, please!” Eventually, we would only allow him to go three times before he had to go do something else. This kept him engaged while forcing him to expand his interests and spend time in other areas of the park.
49% I suppose that life would be a lot easier if Ben was like other kids, but then again it would be a heck of a lot less interesting.
< My Thoughts >
Ben and Snow White’s adventures don’t stop here. Ben became a celebrity at Disney World, having ridden Snow White’s Scary Adventures a record number of 3,500 times, before the ride permanently closed.
1% After a few short minutes of waiting, a door opened and out came Snow White herself to come to talk to Ben.
All of a sudden, a huge smile filled Ben’s face and he started laughing hysterically. He was positively transfixed.
Snow White continued to talk to him as Ben very shyly took her hand, and then laughed some more. It was an almost drunken laugh, the laugh you hear from a baby when you play peek-a-boo for too long and they drift into that delirious –happy state. Ben seemed to be absolutely glowing with joy.
< End of excerpts from Ron’s book >
REFERENCES used in < My Thoughts > are:
Berquist, K., Charlop, M. (2014). Teaching Parents of Children with Autism to Evaluate Interventions. Journal of Developmental & Physical Disabilities; 26:451-372.
Wong, V., Kwan, Q. (2010). Randomized Controlled Trial for Early Intervention for Autism: A Pilot Study oof the Autism 1-2-3 Project. Journal of Autism & Developmental Disorders; V40:6, p. 677-688.