The Road to Independence with Special Needs Begins with a Single Step
My 18-year old stood before me, body rigid, shaking, frustrated…”I want to live on my own!” he declared. I had been asking him for the better part of the day to put away his clean laundry and empty the dishwasher, and he hit a tipping point, tired of my constant, repeated requests. It was an all too familiar dance of push-pull, teaching and reinforcing necessary household skills while he’d rather be on his computer.
Ryan’s most obvious challenge is autism. He has poor working memory, intellectual disability, and his emotional development is currently hovering at seven years of age. This man-child, pushing back and declaring his independence, just learned two years ago to look both ways in order to cross the street safely. As I stood there watching his frustration build, my sense of sadness, coupled with impatience, grew.
I am a single, widowed parent of this young man. I have been raising him solo since he was four and just barely out of diapers. Parenting has been a conflux of wonderful, scary, hopeful and exhausting experiences. Most days we chug along smoothly without too many major blips on the radar and have found an easier path in regards to de-escalation and redirection of his behaviors. But this day, we were skirting the edges of a minor meltdown, and I wasn’t sure I had the chops for it, my energy level failing to access my varied arsenal of parenting tactics developed to point him in a better direction.
This day, I was bone tired, impatient and about to receive an ‘F’ rating as a parent. I would like to believe that all of us have been there more than a few times….the duality of trying to manage unwelcomed behaviors after a long day but lacking the emotional bandwidth to be overly successful. Finding balance in all aspects of life while tackling mounting parenting demands is an all too familiar place for most parents of special needs children, and it can interfere with best intentions. As I reigned in my emotions, I simply turned and asked, “How will you manage your life away from here?”
This was not our first conversation about independence and to be truthful, it wasn’t a very fair question. As much as we had been practicing daily hygiene routines, household chores and basic sandwich making, Ryan was still struggling to self-initiate but was improving with daily prompts. Twisting his ear, a tic indicating stress, he said he would work it out and to trust him. Hearing those words before, I recognized that his little kid self-was afraid of the conversation, but his adolescent, young adult energy was feeling the need to slowly separate from his mother. Trying to balance the juxtaposition of his emotional age versus his chronological age had been an ongoing challenge, and I reminded myself to listen to which Ry was responding to me.
Pressing, I asked him to share what he believed was necessary to live independently. “What do you mean?” he asked. And thus began my laundry list of life skills observations:
- You can’t cook
- You refuse to do laundry
- You have never cleaned a toilet or washed a dish
- You will not entertain a budget to manage your allowance
- You have never created a grocery list
- And you do not want any assistance to develop these skills
Once I began this litany of the things he couldn’t or wasn’t doing, I found it difficult to stop. I knew this conversation was taking a tone towards harsh reality and was more a reflection of my own fears about his self-care challenges, but believed he needed to hear these truths. Fixed in place, listening, Ryan said, “I need your help.” I need your help…my son, those words. For years I had been teaching Ry to navigate my world, a while living within his own and asking for help was part of that process. It was a huge step, and I was not going to let this moment pass without action.
Taking a deep breath, I said okay. Wondering where to start, I decided to approach his request when the energy in the household felt calmer, and we agreed to sit down together later to create a game plan. As we went our separate ways, I processed how to move forward. What basic skill could we focus on that would resonate with him? We had been working on basic kitchen skills recently, and I decided to tie in those experiences with the creation of a grocery list… the assignment: food for a week.
An hour later Ry and I sat at the kitchen table, debriefed about our earlier emotional exchange, and I shared my idea of the list. Excitedly, he headed to his room, eager to prove me wrong about my earlier assessments. Twenty minutes later he emerged, list in hand, reading off his perceived food needs for a week. Listening, eyes closed, I realized he had done a good job. All of those years of talking him through the grocery store, having him help me put away food, doing homework at the kitchen island while I cooked and taking a high school nutrition class seemed to have paid off.
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That weekend we headed to the store to price out his shopping list, food recognizance on the horizon. What I imagined as a quick 20-30 minute trip turned into a two-hour exercise in patience and giving up control.
Grocery shopping has never been a favorite activity, and I prefer to get in and out of the store as quickly as possible. As Ryan and I headed into our favored local store armed with his 15 something item list, I asked, “What produce is on your list? Let’s start there.” Ry stopped and said, “Produce is not my first item. I need bread.” Okay! Off we went looking for the best loaf of wheat bread known to humankind. Choosing his loaf, he sat on the floor and began writing. Bending over, I quietly said, “Ry, get off the floor. That’s not appropriate.” Puzzled, he told me that he had no place to write and was almost finished.
As shoppers walked by, staring, I decided to let him be… this was about meeting his needs, not mine or another customer’s. I’d spent years introducing Ryan to our community, creating a haven of understanding and tolerance, and knew he was safe in this store. Most of the employees knew him and me, understanding his differences without judgment, and if he needed to sit on the floor for a moment, no one was going to react. Peeking over his shoulder, I realized that Ry was recording brand name, unit price, SKU number, and cost in USD…we were going be here for a while.
Next item was apples. Living in Washington State, apples are almost as important as coffee and salmon: there were important decisions to consider: pre-bagged, conventional, local, seasonal, organic and variety and Ryan was going to work through every iteration available. His processing required consideration of every option before making an “informed” decision, and he was fully prepared to research thoroughly, fixated on the fruit and all that it had to offer. Minutes later, Ryan thoughtfully chose his apples, weighed and priced them and was ready to head to dairy. Whoa! Stopping him, I asked if there was more produce on his list.
We were here, and it made more sense to price those items before moving on to another section of the store. Again, sticking to his plan, he told me that produce was not the next thing on the list, and he had to go to dairy. Shaking my head, I was watching my beautiful, sunny afternoon evaporate into a shopping slog and was feeling a little desperate to speed up the process, but Ry, determined to follow his plan, the list, would not consider a different approach. Frustrated and heading to dairy, I was trying to devise a strategy to get him out of the store more quickly.
As a veteran teacher, I understand that students have unique learning styles and require differing levels of support to ensure academic success and I work diligently to provide a positive learning community. But, this afternoon, all I wanted to do was bend Ry to my own will and get on with the rest of my day instead of using this experience as a teaching tool. Standing in the dairy section, this realization hitting me hard, I decided that this was the most important thing I could be doing on this day, at this time. It was his process, and it was my job to facilitate and support what he needed for himself. Time was no longer a factor.
From that point forward, the remaining time in the store was an opportunity to educate and connect Ry to helpful employees. I engaged the woman behind the deli counter, including Ry, and explaining our mission. Which meats were on sale, what was her favorite, how did the unit price compare with pre-packaged meats on the other end of the store? It became an exercise in learning, understanding and over time I witnessed a conformational shift in Ryan’s confidence navigating this food landscape in small chunks of information.
Upon arriving home, I asked him to do the math and total his food costs. Sitting at the table, calculator in hand, he added the costs and we broke down the list into staples, bulk and weekly purchases. In a matter of minutes, with guidance, Ry recognized that his list lacked dinner items, learned which items required weekly purchase, what foods could be stretched over the period of weeks to months and that food was expensive. At the end of the afternoon, Ry asked if we could do this again, with dinner recipes in mind. I suppose I know where I’ll be spending my next Sunday afternoon.
Love the Life You Live
Kimberly Reeves, MEd, is a Professor of Biology at Whatcom Community College in the Pacific Northwest. A firm believer in the value and strength of community, Kimberly has served as a Board member of F.A.C.E.S. Northwest (Families for Autism Care, Education and Support), a local summer day camp for autistic children in Whatcom County, Washington, has consulted with her local school district and assists with her son’s Special Olympics activities. She provides informational support to families processing an autism diagnosis or struggling to understand and navigate their rights and responsibilities as parent advocates and guardians as outlined by the federal government. She and her son Ryan are currently co-authoring a book, Raising Ryan, and are enjoying this experience together. Kimberly can be reached at firstname.lastname@example.org and welcomes questions or comments.
This article was featured in Issue 76 – Raising A Child with Autism