From Thought To Action: A History of Life-Changing Advocacy
By Rebecca Miller
The Autism Resource Fair is on Sunday, June 5, from 11-3 at the Autism Community Store in Aurora, Colorado.
Newly diagnosed? Just moved to Colorado? Are you looking for resources and a way to connect with others in the neurodiverse community?
Mark your calendar and make a plan to attend the 10th annual Autism Resource Fair!
2022 marks the 10th year of Colorado's largest and most comprehensive Autism Resource Fair. The fair has grown year after year and has proven to be a consistent source of valuable information, resource connection, and a community-enriching event.
With over 100 vendors and activities for all ages, it is one of the most anticipated resource fairs of the year. Standing in the middle of the rows of tents and tables, watching the BBQ grill smoke, and hearing the laughter of the young ones in the bubble zone, one must wonder how it started and why?
It all started with summer dread.
Ten years ago, Shannon Sullivan was worried about her daughter. The summer was fast approaching, and she was attempting to find therapies and activities that could help her daughter and be a fun thing to do. The sifting through web pages was exhausting. Not only did she need to match her daughter to the right therapist who could understand her level of autism and needs, but did they take the insurance? When did they meet? How was transportation arranged? What about medication administration, and on and on and on.
Frustrated, Shannon wished for a better way, but spending hours searching on her own was the only way. It was time-consuming and frustrating. As most autism moms do, she decided to be the change she wanted to see.
Realizing that she was not the only mom with summer dread, Shannon got on the phone with a handful of providers she knew and asked them to come to the Autism Community Store to participate in a Summer Resource Fair. Five of them said yes, and the beginning of the Autism Resource Fair started with few tables under two tents in the store's parking lot. It was a small but measurable success. Shannon decided to hold it again.
The following year, it doubled. Then, it tripled.
Soon the Autism Resource Fair would include over 100 different vendors.
These vendors include self-advocates, arts groups, recreation, non-profits, Community Center Boards, and therapists of all persuasions, all gathered for one reason and one reason only:
To destroy the three truths.
There are three truths when it comes to being on the autism spectrum or caring for an autistic person. The truths are the following:
It is isolating.
Resources are scarce.
Information is difficult to access and hard to find.
Not at the Autism Resource Fair held by the Autism Community Store. It's the one day when the truths no longer apply.
TRUTH NUMBER ONE: ISOLATION
The Autism Resource Fair provides a chance to be outdoors and feel safe and understood–to stim, dance, relax and play authentically and without hesitation. It is the day where being isolated changes to being surrounded by a like tribe, within the confines of a festival complete with bounce houses, bubble machines, a backyard barbeque, and games. The fair becomes a yearly event to see familiar faces or meet up with other parents and providers and move beyond exchanged pleasantries during pickup or post-appointment. It's a day of being 100% included within a safe space, where all people share the same objective–to love and be loved on the spectrum.
The truth of isolation – denied.
TRUTH NUMBER TWO: RESOURCES ARE SCARCE
It is the day when resources are abundant and easily accessed under colorful tents and decorated tables. The fair is a welcome break from the late-night searches on the web or emailing providers hoping for a quick return and bracing oneself for the denial or frustrated sigh when it isn't the right fit.
The fair provides absolute inclusion and access to plentiful and varied resources all in one place. Providers stand behind tables and eagerly answer questions, provide handouts, and make appointments to help families gain access to care. A face becomes attached to a name, forming a connection. And, it goes beyond therapeutics–it's information about summer camps, day programs, dental access, scout troops, and recreation options–all geared toward the neurodiverse.
The truth of scarcity–denied.
TRUTH NUMBER THREE: INFORMATION IS HARD TO FIND
Access to the providers is easy to negotiate with layout matching like resources, such as occupational therapists with other OTs, arts programs with arts programs, and healing arts with others. This consolidation by category enables a person to seek out similar resources and compare services without aimless wandering from booth to booth.
The truth of difficulty in accessing information is also denied!
But there are other challenges: What if you have multiple diagnoses or have mobility challenges, or if the parents have disabilities themselves?
The Autism Resource Fair prioritizes safety along with accessibility. It is compact but not crowded, and it is wide enough for wheelchair or stroller access. During the layout planning, the staff is mindful of minimizing potential elopement, a need to take a break from the activities, or if someone just needs a helping hand. Easy access through thoughtful wayfinding and safety makes the Autism Resource Fair worth attending yearly.
The team at the Autism Community Store recognized another challenge in accessing resources: What if you are Spanish-speaking only or if English is your second language? El Grupo Vida provides on-site interpreters for the Spanish-speaking community to accompany families searching for resources and provides translation at no charge. Bilingual resources are also available. A dot found next to the provider on the fair map indicates that they have a Spanish-speaking team member available.
Isolated? Nope, here is your ASD FAM and community.
Scarcity of resources? CRUSHED with over 100 vendors.
Access a challenge? Not here! The Autism Community Store has got you covered!
It is the one day when the truths no longer apply. That is what makes the Autism Resource Fair so unique.
But, the true magic is what happens after the fair.
LIFE-CHANGING INFORMATION–A TRUE STORY
In my case, it was becoming a "Mom CNA" through the family caregiver program supported by Medicaid. The magic of making that connection can change a life, even save a life.
As a single mom with a son on the autism spectrum, I was alone. No supports. My family wasn't interested in my son or me, especially since he was on the spectrum. They felt he was a threat clumping him into the stereotype that autistic people were either card counters, savants, or in Max's case, a burgeoning school shooter. Invitations to family dinners ceased, and my son moved from one birthday to the next without a mere acknowledgment. We didn't exist.
My parents were dead, and my son's father ghosted when Max was two. I was alone, and holding a job was hard. Really really hard. I was able to get my CNA as the first step to nursing school, but with Max's needs, I couldn't keep a job. We plunged into deep poverty, but the introduction to the family caregiver program made the most significant impact on my son and me.
I would be able to care for my son at home and get paid.
This program saved my life. The mom CNA program allowed me to return to school as a nurse. As Max's stability increased, we both graduated. Me from the LPN program and Max from family caregiver support.
My son is now in college for music performance. The program allowed me to coach him regarding his ADLS and other therapies. Because I wasn't delegating to a sitter, my son gained progress. It took a while, but soon Max could do the things he was supposed to do without prompting or reminding. This graduation pushed him forward into being able to live independently.
If I didn't have this support, this wouldn't have happened. My son would still be struggling, I wouldn't have become a nurse and got out of public assistance, and my son wouldn't be a college student. I know this for sure. The resource fair provided me with this information, and it was a lifesaver. I have recommended the parent CNA program to many other parents because it is the difference between having to choose between milk and gas.
I am just one mom, and I am forever grateful for this information.
THE ONLY REGRET IS THAT THE FAIR IS JUST ONE DAY
Leave it to the Autism Community Store to tackle this obstacle!
Shannon Sullivan and her team continue on their mission to destroy the truths. They are in the process of creating an information guide regarding autism resources in Colorado. This one-stop guide will be continually updated. It is a visual guide with information on negotiating the system, a breakdown of the different waivers and how to apply for them, and a yellow-page directory of providers and resources. It doesn't take the place of the Autism Resource Fair, but it does provide equity and access to the abundant and diverse resources available here in Colorado.
However, nothing can compete with the magic of the Autism Resource Fair, where access to information is democratized, without computer or language barriers, and it is free to attend and held in a safe and inclusive festival.
The magic of walking into a fair and everyone around you is like you or your loved one. Stimming, shaking, dancing, yelling, or not speaking, whatever it is, everyone is just the same, and that is where the magic lies.
The Autism Resource Fair is on Sunday, June 5, from 11-3. The Autism Community Store is near the Aurora Mall located at 14095 E Exposition Ave, Denver, CO 80012,
For more information, visit the Autism Community Store webpage or call (303) 309-3647