“…If you can't see, hear or feel something, it doesn't exist!”
Say that with sour grapes in your mouth. That’s how the Katie the crotchety kangaroo character responds to Horton the Elephant in Jim Carrey’s 2008 movie “Horton Hears a Who” based on Dr. Seuess’ book with the same title. That classic has been one of Ronan’s beloved books for over a year now. Horton is on a mission to help the Whos of Whoville as they unexpectedly find themselves on a pink clover in the Jungle of Nool. As the main character of the story Horton works ever so hard to secure a safe place for the Who community. He does this even while he faces attack from his own jungle neighbors.
I was going to write about that quote and compare it to how frustrating it is to listen to news stories that deny the autism epidemic too many of us are experiencing. I was going to go off on how “they” out there in the regular world cannot fathom what we know to be true: that vaccines have contributed to our children’s regressions and their chronic medical issues.
I really wanted to use that quote in my story, but I am in such a bad mood as I type this. I don’t want to feed into “their” agenda of how we are constantly perceived as anti-this or anti-that. Instead, I’m going to backtrack to how I was given the opportunity to reflect upon that quote. I think it’s more appealing to the warrior mama in me. Bad mood or not, I can’t let “them” interrupt my mission to get Ronan better, healthier and more able.
Ronan checked out a DVD at the local library. To many, this may sound trivial. But, to those of you who have a kid like mine, you might appreciate how amazing this feat is. Ronan first saw the DVD in July when he joined his siblings on an outing to the children’s library. Excitement filled his eyes when he recognized one of his favorite characters on the movie case: Horton the Elephant. ‘Elephant’ was one of the first animal sign language signs Ronan ever learned. When he and I see pictures of an elephant, and especially when he sees Horton in his Dr. Seuss books, Ronan looks directly at me and prompts me to sign the elephant sign. Not only does the sign look exactly like an elephant truck swishing in the air, it comes with what I think is the most fantastic sounding elephant trumpte anyone has ever heard. Ronan giggles and signs elephant again. Can you picture me sitting on the floor of the library signing elephant while trumpeting happy elephant sounds? It’s really a beautiful sight.
We are allowed to check out five DVDs at a time at this library so all five of my children are able to make a movie selection. Ronan learned how to check out material at the library on the day he saw the “Horton Hears a Who” movie on the library shelf. It took a few more visits to get the checking out process down though. I was getting a bit frustrated that each visit didn’t show much sign of improvement. Ronan remained hesitant to give his movie or books to the librarian because he thought she was going to take them away. This was a typical pattern for Ronan on the first four or five times we went to check out his items.
After these unsuccessful visits, we ran into an angel in the form of an understanding librarian. She’d been watching the struggle Ronan had and wanted to figure out a way to ease his stress. She’d already asked how to say ‘thank you’ and ‘you’re welcome’ in sign and was quick to make contact with Ronan even if he wasn’t interested in her greeting. I made sure to quickly redirect him in order to offer a chance to build a personal connection. She was undoubtedly someone willing to help in a time of need. And, it was evident I needed all the help I could get to create a good library outing for Ronan. As our visits increased, Ronan added a “Buh!” with his simple goodbye wave to this woman as he departed the counter area. Clearly, they were making a connection.
On our next trip this same librarian was working, but she was farther away from the counter. A new staff member unfamiliar with Ronan’s needs was ready to check us out. Angel librarian stepped forward and asked if she could take our stack of books and movies instead because Ronan had started to go into a sensory defensive mode. Something else interrupted the process and my heart dropped because we had slowly made some progress already at this moment of the routine. I thought, Oh no. He’s ready to fight instead of follow directions. After several reassuring gestures and lots of encouragement, Ronan was invited around to the other side of the counter. Together, he and angel librarian scanned the movie case. Ronan never had to release the video and instead got a sneak peek behind the counter where the magic of library loaning happens. Success! Books and movies were checked out, bagged into our book bag and we scooted out quickly to the car. My kids usually chatter all the way down the side walk to the parking lot discussing the names of the movies they’ve checked out. They talk about their new books waiting to be read and how they love visits to the library. Finally, they decide whose movie gets to be played first when we get into the car. I shouldn’t be surprised that they always pick Ronan’s movie. They know what a struggle it is he faces so it’s a wonderful gift for him to have first dibs on the movie line up.
To keep up with this our library visiting habit, I brought my kids to the library early last week. Ronan beamed when he saw that same elephant movie on the shelf. We’d had a two-week break from our regular routine so I didn’t know how helpful of a participant Ronan would be. He grabbed the “Horton Hears a Who” case and it was again his library item of choice. Attempting another check out, Ronan hesitated only momentarily before handing the DVD case to the our angel librarian. With happy smiles and a high five, the movie was swiftly scanned and returned to Ronan before he could blink. A new step was added to the routine as well—put and keep the movie in the book bag to carry it like the big kids do.
What this librarian saw in Ronan’s previous struggles (the misunderstanding of the check out process), what she heard in his pleas for help as he thought the worst (that his movie had to be given back before he could enjoy it), and what she felt in her heart (how to make this better for a little boy who is trying) really moved me. She could have pretended to ignore the 8-year old still in diapers who flails his arms in protest to the rules he’s yet to understand. But, she didn’t. Thankfully this librarian’s presence and Ronan’s ability to finally grasp how the system works are a testament of heartfelt willingness coupled with a hope of finding future success.
Ronan’s movie selection has been enjoyed by all of my children the few times he’s checked it out. I love Jim Carrey’s acting in the movie and picture him and all his humorous goofiness behind a microphone speaking for Horton. Jim’s got a special place in my heart for the advocating he did while dating Jenny McCarthy. I appreciate his role as the “autism whisperer” and find a genuine smile on my face as I listen to him speak throughout the film. Parts of “Horton Hears a Who” have me doubled over in laughter even after hearing the script at least a dozen times now. My typical kids have memorized several of the scenes and act them out. It’s quickly become a family favorite, and I should probably invest in buying our own copy of it someday.
Instead of the doom and gloom of Katie the Kangaroo I was originally going to write about, I’ve kept one of Horton’s line of the movie nestled closer to my heart: “There’s a tiny person on that speck that needs my help!” As loud as my own voice has gotten for Ronan, there are days I feel like a very meek person instead. I don’t like those days because that feeling has usually preceded a denial or interruption in services of some sort for Ronan. I can’t get too hung up on my woe is me moment because it doesn’t help me or Ronan if I stay upset. Even what should be a simple trip to the library can become a fumbled mess of emotions and insanity. Anything can happen. Anything has the potential to set Ronan off. I have to remain stable and secure in how I manage that situation for him. If I flounder, both of us can fail.
We’d brought Ronan’s library movie into the house one day this week. It was the same day I was in a bad mood and sounded more like Katie than Horton. Ronan wasn’t having a good day either. His uncooperative behaviors and my bad mood were not a good mix. That bad mood only saw what Ronan couldn’t do, heard only those tell-tale autistic sounds of regression and felt only a fear of what if Ronan can’t recover? Within minutes of the movie starting, Horton had Ronan laughing with glee. I sat down to type hoping that my quiet writing time would send me a calm I desperately needed. I was so distracted by Ronan’s squeals though as he watched the movie. I left the computer to watch the movie with him. I know the story well, but I was overwhelmed with how Horton has to make a stand for the Whos of Whoville. He’s not afraid to do that because he knows how precious all life is, even the lives of those tiny people others refuse to see. Throughout the story, throughout the trials and throughout the unexpected changes, Horton sticks to his plan. He truly believes that he can help the Whos, and he does just that. It takes a Herculean effort to convince the other occupants of the Jungle of Nool to also believe in this quest, but Horton is triumphant in the end. It’s a beautiful message and one that I especially needed to hear that day.
Every day I imagine the amount of effort that child of mine needs. He needs it in order to stand on his own two feet and to survive a full day. That usually shakes any negativity out of me so I can get my thoughts into a better perspective. Ronan needs me to stand tall and to be willing to barrel down a path for him. Ronan needs me to be secure in the decisions I have to voice for him because while he’s never number one on someone else’s list, he’s in that position on mine. Ronan’s needs are great, and it takes a lot of energy to help him. I feel some pain in that aspect. I’ve gotten used to it as I plan our days, but I’m never far from some sort of exhaustion because of what is required to care for him. I’ve got to be in tip-top shape to make sure he gets through his daily tasks. I don’t mean svelte muscles that shimmer in the sun kind of tip-top shape. I’m talking about having some of that mental “can do” spirit similar to what Horton possessed. That spirit is needed to outsmart a very intellectual child who doesn’t believe he has the many limitations he does.
Ronan may not view himself as the multi-disabled little kid others see in him. Ronan is mentally stronger because he is constantly trying to do more to help himself. That gives him an extra push to get through some very difficult tasks he would prefer not to do. I see that during therapy sessions that truly test him and his limits. When he’s finally accomplished whatever problem he’s been given, he usually has better confidence for the next time. Seeing Ronan make those gains helps drives my ability to be a better Mom and advocate, too.
My own “can do” spirit has been beaten down so many times, but I will never let anyone ever take it away. People like the angel librarian remind me that small steps forward are possible. Even one or two steps that bring us backward are still movement. It may not be in the right direction, but we can always go forward again. Ronan and I grow stronger every day—he in his own outlook of what he can do, and I in my ability to believe in this important mission of helping Ronan.
Cathy Jameson is a Contributing Editor for Age of Autism.