Riley Sloan is Nine: Raising a Medically Complex Boy is a mother’s heart song for her little boy. It is poetry poured from soul to page as the author weeps for joy at his arrival and heartache as he struggles, from difficult delivery to developmental delay. Regardless of your child’s abilities or disabilities, the feelings poured out within are relatable. We all watch our children grow and celebrate milestones. We all worry when they struggle and hurt for them when they hurt. Riley Sloan is Nine (RSi9) is a heartfelt exploration of one mother’s experiences that is an excellent bit of insight for parents, family members, and those dedicated service providers who work with children of various abilities. Although it is a quick read, there is plenty to absorb from its pages. It is as cozy as sitting down with the author over a cup of coffee and allowing her to pour her heart out for your benefit, and I can promise you Kimberly Williamson has heart worth hearing. Take a little sit down with Riley Sloan is Nine and savor it. You won’t regret it.
It was a joy and an honor to get the opportunity to discuss upcoming release Riley Sloan is Nine with the author, Kimberly Williamson. Read here to get to know a bit about this dear young man and consider sharing this post and this book with someone who might benefit from it. Riley Sloan is Nine: Raising a Medically Complex Boy releases on July 31 on Amazon and will be available at Kimberly’s studio, Once a Rose Studios in Calico Rock, Arkansas.
Woman by Grace: You and I both know Riley is an amazing young man with a big heart. What is one thing you want readers to know about him?
Kimberly Williamson: He does have a big heart. He is happy, overall, in spite of all the reasons he may not be if he was any typical person. He won’t go to college. He won’t be able to live on his own. He won’t be able to drive a car or get a driver’s license. He sees his peers getting married and beginning to have children. He loves children. He has expressed a desire to have a wife and kids, and while we love his heart, and don’t want to discourage him; we just don’t know what the future holds. Riley says in his interview not to stress about it or it will ruin your life. Live each day as it comes, and do your schoolwork! How profound of my young man!
RSi9 covers the first few years of his life, but Riley will be 20 by the time of publication. (On the day of!) Can you tell us a bit about the path this story took to get to publication?
I have always been a writer, and very fond of poetry. I think I wrote my first little rhyming couplet when I was six years old. Since the idea started as a poem, it made sense to me to continue with that when writing the rest of the story.
We were in a particularly hard season of his life at around age nine (2014). Behavior was a huge issue. We were seeing a psychiatrist every three months, and we changed medications at least that often. He had a diagnosis of Oppositional Defiant Disorder at the time, and we were warned that this would progress into conduct disorder, which is the same diagnosis, with criminal charges. This terrified me, of course, but it didn’t feel like the right fit. Every medication he was given to calm him had the opposite of the intended effect. This was very telling, but we didn’t know it yet. We were on the cusp of a breakthrough, telling us that he did NOT have ODD, but rather, a host of other comorbid conditions, anxiety and intellectual disability chief among them. He was under the care of behavioral therapy while at school, and one particularly horrific therapist wanted to send Riley to a group behavioral hospital because she felt he was a danger to himself and others for throwing a backpack on the school bus. We discontinued behavioral therapy immediately and pursued a program at UAMS (University of Arkansas for Medical Sciences) we were recommended by the intake person at the behavioral hospital we were referred to. I’ve never been so grateful for a conversation with a stranger. The program, the Psychological Research Institute (PRI) was a 28-day inpatient program meant to safely remove all non-essential medications and do tons of baseline testing. We learned so much from this. Cramming all we had just learned into this book didn’t seem like the right place to end this story, since for us, it felt so much more like a beginning. So, I wrote Riley Sloan is Nine, the last poem in this book, at that crossroads. I shared it with his educators, and the reception was surprising. The principal asked if she could share it with other colleagues. Given such positive feedback, I decided that I needed to write his story from the actual beginning.
What a journey it was to go all the way back, and feel those feelings again. I kept working on it until it felt reasonably ‘finished’, which took the next 11 years. Last spring, I got a very strong feeling that it needed to be released on his 20th birthday. Thanks very much to you, Emily, for helping me believe it could happen.
Your heart’s rollercoaster is penned on page in RSi9. Please tell us about your reason for sharing the difficulty along with the joys of raising your disabled child.
I actually touch on this in the book. I did tons of research on where he should be in relation to where he was at every given time. There was not much content 15-20 years ago. Living in rural Arkansas, to boot, made the search difficult. And the longer we went on, and the more we learned about our boy, the less I was able to find. Spoiler alert: as of the publication of this book, Riley Sloan has around twelve different diagnoses. I do cover them in the introduction of this book, mainly to ensure that people looking for support may be able to find it here.
At the end of the day, Riley Sloan is a boy, not a collection of diagnoses. His life has been hard for those of us raising him, but he is able to find and spread joy in living it. He makes me laugh. He makes me cry. I’ve never met any other child like Riley in my entire life. If I struggle to understand things about him, how can I expect others to? So I wanted a total picture. Diagnoses, disappointments, hope and happiness. It’s all in this story.
What is a childhood story about Riley that makes your heart happy?
One thing that lots of people notice about Riley is his sense of humor. He may be mentally age 10 at present, but he’s quite sharp! A story that will follow us always, is the “makin’ cookies” story.
Riley Sloan was probably 7 or so, and he was playing inside while I was cleaning the bathroom. He is a repetitive kiddo. He would alternate between “mama, love you!” And “mama, whatcha doing?” on every path past me. I’d finally had enough “I love you too” and “I’m cleaning out the litter box” that this time he dashed past, he said “whatcha doing mama?” I replied “Making cookies! What’s it look like I’m doing!?” He giggled and dashed away. A little time went by, and by this time I was on to folding laundry. He ran up this time and stopped short. “Hey mama, whatcha doing? Making cookies?” I turned to see him wearing an impish grin, and he dashed off cackling without waiting for an answer.
What are some of the daily challenges he faces?
Riley has developed daily routines over the years that require sameness. Same schedule, same questions, same habits, be they good or bad. And aversions. He doesn’t like to change clothes. He doesn’t like to shower. He can barely stand to brush his teeth. He doesn’t want to take the time to apply deodorant. There are so many things. One of the most limiting things is his impulsivity. He cannot have unsupervised access to the remote control or anything related to the internet because of that. We have to put more than one day’s snacks behind lock and key to protect him from getting sick eating an entire box of Swiss rolls or pop tarts in one day.
A support system is crucial in raising children, especially so when certain factors are involved. Who is your support system?
Thanks to the Arkansas CES waiver program (more on that later), Mom and Dad provide full-time care for Riley now, and one of his grandmothers works as a part-time caregiver. We also have a dear friend who does part-time. Over the years, we have been SO grateful for anyone and everyone who helped us. Everyone who has ever met Riley remembers him. I feel like trying to mention every family member, every caregiver, every healthcare provider in our support system is impossible. We have this interesting synergistic support “ocean”. When one ebbs, another flows, and we support Riley and each other like buoys on the surface.
What are some resources available for parents of disabled children that have been helpful for your family?
If you find yourself living a life of uncertainty with a medically complex child, reach out to your state department of human services. Ask about programs like Early Intervention. Early Intervention was amazing for us. We met with a caseworker periodically who helped get Riley things he needed. His was mostly nutritional supplements, but for kids with mobility issues or medical equipment needs (braces, wheelchairs, etc.), they can be a huge help, and will often know of programs or organizations that would be more specific to a family’s needs.
The big one for us was the CES Waiver program. It has a very long waiting list (ours was 10 years), and the idea is to get on the list early, and keep up with it until the person nears adulthood. We started Riley on the list just of out Early Intervention, around age 8, and he reached the top of the list just before his 18th birthday.
Every child and every state is different, but advocacy for your child is key. At times, I felt like a bulldog. I may have even been called one a time or two. It’s not a bad trait to nurture when living this life. I have included Arkansas’ links here:
Early Intervention: https://portal.arkansas.gov/service/ar-early-childhood-intervention-first-connection/
CES Waiver: https://humanservices.arkansas.gov/divisions-shared-services/developmental-disabilities-services/ces-waiver/
Passe Program - PASSE - Provider -Led Arkansas Shared Savings Entity: https://humanservices.arkansas.gov/divisions-shared-services/medical-services/healthcare-programs/passe/
Readers can’t help but get emotionally attached to Riley through the book. What does the future hold for him?
This may be the single toughest question, and the one we have yet to fully answer. We just don’t know. Perhaps in a few more years, we’ll have a better idea about who of our younger generation might be willing to take over care for Riley if/when we’re gone. We have a lot of work to do, and we always will. But would we do it all again?
Read and find out.
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