We Always Start With A Conversation…
For new families, this is how our journey together begins. Families reach out to us looking for a welcoming environment, a community where their student can be with "people like me" -- a place where they actually want to be.
Our conversations focus on areas of interest, passions, and stories of success. But we also get the chance to understand where the challenges, barriers, and struggles have been. As I reflect on this past year, I come back to these conversations and how they help guide us in finding common ground and start a relationship that, for many families, has been the first time they've felt heard and that they've finally found their place.
That relationship really is a “journey” of sorts, a path that we walk together and, at times, hold each other up along the way.
The whole idea of creating Islands of Brilliance started with a conversation. A conversation between parents about who our son was, the things that motivated him, the opportunities that were out there, the ones that weren’t, and the ideas we had as a family of what was needed for kids like Harry. Ten years later we are still having those conversations, but with a bigger audience. Now more than ever, we need to listen to each other, support each other, and walk this path together.
Our loved ones may be unique but the feelings of worry, love, and hope that we share are what connect us. And because this path, this journey, is different from the stories we often hear from other parents, it actually provides more opportunity to pause and celebrate. What might not seem a victory to others who don’t walk this path, we know, is indeed a wonderful reason to celebrate.
I know that my life journey of parenting a child with autism has made me a better person. I am more patient. I am stronger, more empathic, but also more creative in how I look at things. And I have a sense of hope, not just for my family but for what we can do together. Together, we can be the change we want to see for our loved ones.
One change we focus on is helping families and students understand the importance of raising the bar. As parents who were told to lower our expectations, we chose instead to plant a flag in the sand and say, “Oh yeah, just watch this.” Because this journey is longer, we know that once one milestone has been achieved, it is simply planting the next flag, then the next one, and the next one.
It may sound odd, but as a parent, a special education teacher, and now as a support provider, one change or “goal” is to not be “needed” anymore. I have actually had that conversation with students and told them that my goal is to have them not need me anymore. Sometimes, that results in them feeling shocked or hurt. But in reality, getting to a level of independence means letting go...and at times being unsuccessful. Failing can be scary but it's also where we learn the most about what went right and what went wrong.
Our son, Harry, really struggled during the pandemic. A child who once seemed to be in his own world now desperately needed to be “out there” doing things. He just got back from his third, yes third, independent trip. He picked a destination, chose the mode of transportation (for those who know us, of course it was trains), booked his ticket, found a hotel and even scoped out restaurants. And he did this all on his own.
After each trip he reflected on what went well and what he learned. I reflected too. Was it scary when he didn’t text right away to say that he got safely to his hotel or sent pics of the train ride? Yes. I wanted to follow every moment to know what he was doing, that he was safe, took his meds, ate something that resembled healthy food...you know, the normal things parents worry about. It took some time, but I was able to look back on my own adventures at his age. My parents didn’t know what I was doing every waking moment. I learned that I needed to let go and to trust him, to let him know that I believed he was capable of getting out in the world on his own.
Isn’t that a great analogy to our collective journey? To know that all the work we are putting in will bring the greatest level of independence possible to our loved ones? To let them make their own choices, even if they fail? As I've said, often those mistakes, those failures are where we learn the most. I can share a story about Harry’s first very expensive cab ride or that he learned why tipping is really important, but I digress...
In 2021, IOB also ventured out too! We took on some new ideas and opportunities with the goal of changing what workshops looked like and felt like. Venturing back into in person learning opportunities was scary. Providing that safe environment with the added element of a pandemic steered us in a different direction for workshops. Our Urban Gnome Project was a big undertaking. One that felt strange and exciting and for many, less “familiar” than previous workshops. This one was outdoors, had no technology, was longer, and didn't have the 1:1 mentorship we usually provided. What we learned through this collective experience was that our students were up to the challenge. Their joy in being together wasn’t based on prior experience. What they appreciated was the chance to learn, be heard, and share their stories. They trusted us to create a learning environment for them, to know who they are and challenge them to step outside of their comfort zones. And it was so much fun! It provided inspiration for more “summer camps” in 2022. As always, we learn from doing and from each other.
We have also learned that through our workshops, students develop their own voice and begin to advocate for themselves. Often that means saying yes to more experiences. But sometimes it means saying, “No, I want to take a break.” During a recent parent meet up, one mother shared that through Islands, her son “found his voice.” As parents we are used to protecting our children from others, from people who might take advantage of them or put them in situations where they are vulnerable. So we often make choices for them out of our love for them. But what happens when they start advocating for themselves? When they want to take a class that might be challenging or “harder than we think they are ready for”? As long as we know that they are making an informed choice, it is on us to step outside of that protective comfort zone and trust them.
I get it, stepping outside of our comfort zones can be scary, not just as a parent, but also as a “professional”.
In May of 2021, I was informed that I have been nominated (by several people) for the Milwaukee Business Journal’s "Women of Influence" award. I don’t think of what I do as a business–it's a passion for this community. However, in dressing up and attending these meet and greets, I feel empowered to speak to the importance of DEI initiatives, not just talking but actually doing. Since then, I can honestly say that people are starting to come to us and asking, is this something your students can do? Can we partner with you to make this a reality and can you teach us what we need to know? Previously, that didn’t happen a lot. Yes, I get on my soapbox and talk about things like transportation, the HR process, and the changes that need to happen in training and job coaching to actually create independence. But IOB is now having those conversations with people who want to make a difference. That makes putting on makeup and heels worth it.
The other new challenge and opportunity that I am incredibly proud of was being appointed to the Governor’s Council on Autism. After years of learning, listening and wanting to make a difference, I have the chance to give voice to our families. I can speak to the needs of our community as a parent, special educator and also as a provider. Conversations can now be had at a level I had never dreamed of or thought possible. It is a big responsibility but one that I am happy and ready to take on. You could say I've been waiting to have these conversations for quite some time. I can finally bring my notes and raise my voice so that our families are heard.
So what does this all mean? What if we could take all of these accomplishments and celebrations and make sure that all families in the austistic community, whether that is WI, the Midwest, or nationally, have someone who will listen, walk the path with them, and know that together, we can make a difference? That is pretty exciting to think about!
How is this a reflection of what 2021 was like for Islands of Brilliance? Simply, it means that we are still here. We hear you and feel that after almost ten years, we are moving forward on this journey, this path, with open hearts, open ears, and most of all, hope.
And we're just getting started.
Banner Photo by Priscilla Du Preez on Unsplash
